Você está na página 1de 351

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 1

desenvolvimento de um sistema integrado para avaliação inicial dos doentes oncológicos admitidos em cuidados paliativos

josé antónio saraiva ferraz gonçalves

Orientador: Professor Doutor Rui Nunes Co-orientador: Dr. Nigel Sykes

porto

2011

josé antónio saraiva ferraz gonçalves Orientador: Professor Doutor Rui Nunes Co-orientador: Dr. Nigel Sykes porto 2011

2 | Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

título

Desenvolvimento de um Sistema Integrado para a Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos.

autor

José António Saraiva Ferraz Gonçalves

edição

do autor

isbn

978-989-xxxxxxxxxxxxx

ano

2012

edição do

texto

Ana Meireles

acabamento

A Medisa

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 3

Tese de candidatura ao grau de doutor apresentada à Faculdade de Medicina da Universidade do Porto

4 | Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 5

Artigo 48, parágrafo 3º “A Facu ldade não responde pelas doutrinas expedidas na dissertação”

Regulamento da Faculdade de Medicina da Universidade do Porto Decreto Lei nº 19337, de 29 de Janeiro de 1931

6 | Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 7

Júri da Prova de Doutoramento

Presidente

Reitor da Universidade do Porto

Vogais

Doutor José Eduardo Torres Eckenroth Guimarães Pofessor Catedrático da Faculdade de Medicina da Universidade do Porto

Doutora Maria Amélia Duarte Ferreira Pofessora Catedrática da Faculdade de Medicina da Universidade do Porto

Doutor Rui Manuel Lopes Nunes Pofessor Catedrático da Faculdade de Medicina da Universidade do Porto Orientador da tese

Doutora Guilermina Maria da Silva Rego Pofessora Auxiliar da Faculdade de Medicina da Universidade do Porto

Doutora Marília Assunção Rodrigues Ferreira Dourado Pofessora Auxiliar da Faculdade de Medicina da Universidade de Coimbra

Doutor António José Feliciano Barbosa Pofessor Auxiliar Convidado da Faculdade de Medicina da Universidade de Lisboa

8 | Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 9

corpo catedrático da faculdade de medicina da universidade do porto

Professores Catedráticos Efectivos

Alberto Manuel Barros da Silva Altamiro Manuel Rodrigues Costa Pereira António Albino Coelho Marques Abrantes Teixeira António Carlos Freitas Ribeiro Saraiva Daniel Filipe Lima Moura Deolinda Maria Valente Alves Lima Teixeira Francisco Fernando Rocha Gonçalves Isabel Maria Amorim Pereira Ramos João Francisco Montenegro Andrade Lima Bernardes Jorge Manuel Mergulhão Castro Tavares José Agostinho Marques Lopes José Carlos Neves da Cunha Areias José Eduardo Torres Eckenroth Guimarães José Henrique Dias Pinto de Barros José Manuel Lopes Teixeira Amarante José Manuel Pereira Dias de Castro Lopes Manuel Alberto Coimbra Sobrinho Simões Manuel António Caldeira Pais Clemente Manuel Jesus Falcão Pestana Vasconcelos Maria Amélia Duarte Ferreira Maria Dulce Cordeiro Madeira Maria Fátima Machado Henriques Carneiro Maria Leonor Martins Soares David Patrício Manuel Vieira Araújo Soares Silva Rui Manuel Almeida Mota Cardoso Rui Manuel Lopes Nunes

10 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Professores Catedráticos Jubilados e Aposentados

Abel José Sampaio da Costa Tavares Abel Vitorino Trigo Cabral Alexandre Alberto Guerra Sousa Pinto Amândio Gomes Sampaio Tavares António Augusto Lopes Vaz António Carvalho Almeida Coimbra António Fernandes da Fonseca António Fernandes Oliveira Barbosa Ribeiro Braga António Germano Pina Silva Leal António José Pacheco Palha António Luís Tomé da Rocha Ribeiro António Manuel Sampaio de Araújo Teixeira Belmiro dos Santos Patrício Cândido Alves Hipólito Reis Carlos Rodrigo Magalhães Ramalhão Cassiano Pena de Abreu e Lima Daniel Santos Pinto Serrão Eduardo Jorge Cunha Rodrigues Pereira Fernando de Carvalho Cerqueira Magro Ferreira Fernando Tavarela Veloso Francisco de Sousa Lé Henrique José Ferreira Gonçalves Lecour de Menezes José Augusto Fleming Torrinha José Carvalho de Oliveira José Fernando Barros Castro Correia José Luís Medina Vieira José Manuel Costa Mesquita Guimarães Levi Eugénio Ribeiro Guerra Luís Alberto Martins Gomes de Almeida Manuel Augusto Cardoso de Oliveira Manuel Machado Rodrigues Gomes Manuel Maria Paula Barbosa Maria da Conceição Fernandes Marques Magalhães Maria Isabel Amorim de Azevedo Mário José Cerqueira Gomes Braga Serafim Correia Pinto Guimarães Valdemar Miguel Botelho dos Santos Cardoso Walter Friedrich Alfred Osswald

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 1111

Para a Ângela, o Daniel e o Ricardo.

12 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 1313

You may say I´m a dreamer But I´m not the only one…

John Lennon

14 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 1515

agradecimentos

Num trabalho que representa um corte num processo de investigação que começou há vários anos, a par de outros projectos que se vêm a realizar, há muitas pessoas que contribuiram e cujo trabalho merece reconhecimento. Desde logo aos investigadores que participaram em todos os projectos que o compõem. Tenho de agradecer ao meu orientador o Professor Doutor Rui Nunes pelo seu encorajamento, pelas suas sugestões e pela leitura crítica deste trabalho. Agradeço também ao Dr. Nigel Sykes, meu coorientador, as sugestões, sobretudo no que respeita à investigação que consta dos capítulos 4 e 5. Agradeço ainda à Professora Doutora Guilhermina Rego pelo seu apoio e leitura crítica da tese.

Não posso esquecer a minha equipa na Unidade de Cuidados Paliativos da Rede do IPO - Porto sem a qual este trabalho não teria sido possível. Também a colaboração dos doentes e das suas famílias foi indispensável. E por último, mas sem dúvida mais importante, à minha família que tornou possível o atingir deste e doutros objectivos.

16 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 1717

índice

1 Introdução

21

· Introdução

23

· A Portuguese Palliative care unit

29

Objectivos do desenvolvimento do sistema integrado para a avaliação inicial dos doentes oncológicos admitidos em cuidados paliativos

·

35

2 Comunicação

39

· Comunicação/Informação

41

· Diagnosis disclosure in a portuguese oncological centre

43

Breaking bad news: experiences and preferences of advanced cancer patients at a portuguese oncology centre

·

53

·

Síntese

61

3 Avaliação da Consciência

63

· Avaliação da consciência

65

· Validation of a conscienciousness levels scale for paliative care

67

· Avaliação da função cognitiva

75

18 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

4 Avaliação dos doentes sem alterações cognitivas

79

 

· Avaliação dos doentes sem alterações cognitivas

81

· O método de Delfos

83

· Discussão

91

5 Avaliação dos doentes com alterações cognitivas

97

 

· Avaliação dos doentes com alterações cognitivos

99

· Estudo 1

101

· Estudo 2

107

· Discussão

109

6 Conclusão

113

·

Conclusão

115

7 Resumo

119

·

Resumo

121

8 Abstract

125

·

Abstract

127

9 Anexos

131

10 Artigos publicados

157

11 Artigos publicados como membro do Research Steering Committee da Associação Europeia de Cuidados Paliativos

273

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 1919

índice de quadros

Quadro 1

Distribuição das doenças não oncológicas.

Quadro 2

Método de avaliação da confusão.

Quadro 3

Lista inicial de sintomas/problemas.

Quadro 4

Lista final.

Quadro 5

Forma final do instrumento.

Quadro 6

Formulário de avaliação.

Quadro 7

Regras para aplicação do método de avaliação do sofrimento.

Quadro 8

Dados demográficos.

Quadro 9

Proporções de concordância.

Quadro 10

Dados demográficos.

20 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 2121

1

INTRODUÇÃO

22 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 2323

introdução

Em Portugal morrem cerca de 100 000 pessoas em cada ano, das quais cerca de 20%

de cancro [1]. Uma percentagem ainda maior morre de doenças cardiovasculares, mas

também morrem muitos doentes de doenças pulmonares, renais, hepáticas, neurológicas, SIDA, etc. A maioria destas são hoje doenças crónicas, com um período mais ou menos longo em que os tratamentos destinados a alterar o seu desenvolvimento natural não são eficazes. Nesta fase, frequentemente, os doentes continuam a ser tratados da mesma maneira como se a sua situação fosse ainda reversível ou são afastados com a justificação de que “não há nada a fazer”, mesmo que o doente continue a ser seguido ou esteja mesmo internado.

Esta situação deve-se ao modelo de medicina que se estabeleceu devido ao seu próprio desenvolvimento. De facto, o grande desenvolvimento que a medicina conheceu no século XX, sobretudo na segunda metade, permitiu que finalmente se pudesse modificar eficazmente o desenvolvimento natural de muitas doenças, curar algumas e evitar o aparecimento de doenças infecciosas que no passado constituíram flagelos da humanidade. A varíola foi mesmo erradicada. No entanto, este desenvolvimento levou à situação actual em que o treino dos médicos se focou exclusivamente na cura ou no prolongamento da vida, pelo que quando tal não é possível ficam desarmados e têm dificuldade em responder aos problemas dos doentes.

O reconhecimento da situação atrás descrita deu origem ao chamado movimento dos

hospícios - Cicely Saunders fundou o St. Christopher’s Hospice em Londres em 1967. Esta é a data geralmente reconhecida como a que marca o início dos cuidados paliativos.

24 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

No entanto, Geoffrey Hanks revelou recentemente que já existia um serviço no Royal Marsden, o Continuity Care Service fundado em 1964, com a finalidade de tratar os doentes oncológicos com doença avançada incurável [2]. Considerava-se que, apesar de

não haver possibilidade de deter a doença, a medicina possuía recursos que, se usados adequadamente, podiam responder aos problemas destes doentes. Balfour Mount abriu

o seu Serviço de Cuidados Paliativos em 1975 no Royal Victoria Hospital de Montreal, empregando pela primeira vez a designação cuidados paliativos, que a partir daí se generalizou [3].

Mais tarde, em 1990, a Organização Mundial de Saúde (OMS) num documento intitulado

Cancer Pain Relief and Palliative Care reconheceu a importância dos cuidados paliativos

e considerou o tratamento da dor e de outros sintomas como uma das suas prioridades

na luta contra o cancro, a par da prevenção primária, do diagnóstico precoce e do tratamento curativo [4]. Nesse importante documento, a OMS afirmava que “durante muito tempo ainda os cuidados paliativos serão a única solução, ao mesmo tempo humana e realista, para numerosos doentes, e nada é mais importante, para a qualidade de vida desses doentes, que a difusão e a aplicação dos conhecimentos já disponíveis sobre o tratamento da dor e dos outros sintomas”. Os cuidados paliativos são considerados ao mesmo nível dos outros meios de intervenção e não inferiores ou secundários.

Em 2002 a OMS referiu-se aos cuidados paliativos do seguinte modo [5]: “Os cuidados paliativos melhoram a qualidade de vida dos doentes e das suas famílias que encaram uma doença ameaçadora da vida, proporcionando alívio da dor e de outros sintomas, suporte espiritual e psicossocial desde o diagnóstico até ao fim da vida e no luto”.

Os cuidados paliativos:

· Proporcionam o alívio da dor e de outros sintomas perturbadores;

· Afirmam a vida e vêem a morte como um processo normal;

· Não pretendem apressar ou adiar a morte;

· Integram os aspectos psicológicos e espirituais nos cuidados aos doentes;

· Oferecem um sistema de suporte para ajudar os doentes a viver tão activamente quanto possível até à morte;

· Oferecem um sistema de suporte para ajudar as famílias a lidar com a doença e o luto;

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 2525

· Usam uma estratégia de equipa para abordar as necessidades dos doentes e das suas famílias, incluindo aconselhamento no luto, se indicado;

· Melhoram a qualidade de vida e possivelmente também influenciam positivamente o curso das doenças;

· São aplicáveis cedo no decurso das doenças, em conjunção com outras terapêuticas que pretendem prolongar a vida, tais como a quimioterapia ou a radioterapia, e incluem as investigações necessárias para melhor compreender e tratar complicações clínicas perturbadoras.

Assim a OMS considera que os cuidados paliativos não se devem limitar ao fim da vida,

mas considera que deveriam estar disponíveis desde o diagnóstico. A ideia fundamental

é a de que os cuidados paliativos ajudem as pessoas a viver o mais activamente possível

e não que se concentrem apenas no que rodeia a morte. A ideia é proporcionar uma vida digna e não apenas uma morte digna, aspecto em que outros movimentos se concentram, como os que defendem as formas de morte assistida, as quais, como afirma a OMS não

se incluem na prática dos cuidados paliativos.

A realidade é, porém, bem diferente porque o que se verifica na prática é que os doentes são muitas vezes referenciados muito tarde para cuidados paliativos [6]. Há mesmo uma tendência, pelo menos em alguns países, para tratar cada vez mais

agressivamente os doentes oncológicos [7]. No entanto, um artigo recente que comparou

o tratamento padrão do cancro do pulmão de não-pequenas células com o tratamento

padrão mais a intervenção precoce dos cuidados paliativos revelou que os doentes em quem houve intervenção precoce dos cuidados paliativos tiveram uma melhor qualidade de vida, viveram mais tempo e foram submetidos a tratamentos menos agressivos [8].

Os cuidados paliativos começaram por causa dos doentes oncológicos, mas hoje

considera-se que devem ser prestados independentemente da doença crónica subjacente.

A realidade mostra, no entanto, que os doentes oncológicos continuam a ser os mais

referenciados para cuidados paliativos, como acontece no nosso serviço em que mais de 95% dos doentes são oncológicos. Estes dados são semelhantes aos referentes a outros países. Por exemplo, num estudo realizado na Alemanha verificou-se que 96,5% dos 4182 doentes admitidos em unidades de cuidados paliativos eram doentes oncológicos [9]. Os não oncológicos eram 147 (3,5%) e a sua distribuição por doença pode ver-se

26 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

no quadro 1. Isto acontece por uma variedade de razões das quais se destacam a maior facilidade em estabelecer o prognóstico nos doentes oncológicos e a conotação negativa que o cancro tem relativamente a outras doenças igualmente, ou mais, letais.

Quadro 1 | Distribuição das doenças não oncológicas [9].

Doença

n

%

Sistema Nervoso

44

29,9%

Doença do neurónio motor Acidente vascular cerebral Demência Esclerose múltipla Outras

12

10

6

4

10

Doenças Cardiovasculares

30

20,4%

Insuficiência cardíaca crónica Doença arterial oclusiva Enfarte do miocárdio Outras

12

10

4

4

Doenças Pulmonares

13

8,8%

Pneumonia Doença pulmonar obstrutiva crónica Outras

5

4

4

Sistema Musculoesquelético

12

8,2%

Osteoporose

12

Espinal

3

Outras

4

Sistema Urogenital

10

6,8%

Insuficiência renal

8

Outras

2

Sistema Hematopoiético Doenças Hepáticas Sistema Digestivo Outras

9

6,1%

6

4,1%

6

4,1%

17

11,6%

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 2727

Em Portugal os cuidados paliativos começaram quase 30 anos mais tarde, em 1994, no Centro do Porto do Instituto Português de Oncologia (IPO - Porto) por iniciativa da Liga Portuguesa contra o Cancro. Tivemos a honra de ser o responsável pela direcção desse serviço. Desde então apareceram outros serviços de cuidados paliativos em Portugal mas o seu número é ainda muito insuficiente para as necessidades do país. A recentemente criada Rede Nacional de Cuidados Continuados Integrados prevê o desenvolvimento dos cuidados paliativos em todo o país.

Neste capítulo, descreve-se seguidamente o desenvolvimento da primeira unidade de cuidados paliativos portuguesa através de um artigo intitulado A Portuguese Palliative Care Unit. Na última parte deste capítulo referir-nos-emos aos objectivos desta tese e ao modo como esta se vai desenvolver.

28 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 2929

a portuguese palliative care unit

josé antónio s. ferraz gonçalves

Support Care Cancer (2000); 9:4-7

30 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 3131

Support Care Cancer (2000) 9 :4–7 DOI 10.1007/s005200000211

SUPPORTIVE CARE INTERNATIONAL

José António S. Ferraz Gonçalves

A Portuguese palliative care unit

Published online: 28 October 2000 Q Springer-Verlag 2000

J.A.S. Ferraz Gonçalves (Y) Instituto Portugues de Oncologia, Unidade de Cuidados Continuados, R. Dr. António Bernardino de Almeida, 4200-072 Porto, Portugal E-mail: ferrazg6ipoporto.min-saude.pt or

ferrazg6mail.telepac.pt

Phone: c351-2-5073940

Fax: c351-2-5506833

Abstract

development of the first Portu- guese palliative care unit is described. The activities of this

The background to the

advanced chronic diseases in an environment where palliative care is not yet well developed.

pioneer unit in Porto, which

Keywords

Palliative care 7

include patient assistance, teaching and research, are reported, and the paper closes with some general thoughts on the possible ways of providing a more rapid response to the suffering of patients with far

Portugal

Introduction

Palliative care has its source in the recognition of a problem: the inadequate treatment of patients with advanced chronic diseases. This treatment can be inad- equate by excess or default, that is, failure to recognize the situation and consequent continuation with aggres- sive treatments as if the problem were a reversible one, or abandonment of the patient without support. Such abandonment occurs not only when patients are sent home, but often in the hospital too. In this situation the patients can be labelled as terminal and not followed up with the same interest as others: their needs may not be really considered, and the medications and care they do receive are often quite irrelevant to their condi- tion. The start of palliative care is usually dated from the foundation of St. Christopher’s Hospice in 1967 by Cecily Saunders. In this way the hospice movement was initiated. The term ‘palliative care’ was used officially for the first time in 1975, when Balfour Mount opened the Palliative Care Service in the Royal Victoria Hospital in Montreal [1]. In 1990, the World Health Organization published one of its best-known docu- ments “Treatment of cancer pain and palliative care” [2], in which the importance of palliative care was

recognized. In this document, the WHO stated that palliative care was a priority in the fight against cancer, on the same level as prevention, screening and curative treatment, and the only solution that was both humane and realistic for many cancer patients. Palliative medi- cine is now a recognized specialty and is a subject in university medical school curricula in the United Kingdom and a few other countries. Since its beginnings, palliative care has spread quickly through the world, mainly, like everything else, in the more highly developed countries. In Portugal, palliative care is still taking its first steps. It is the very first of these that is described here.

The beginning

The North Section of the Portuguese League Against Cancer recognized the cancer patients’ situation described above and decided to build a palliative care unit to be called Unidade de Cuidados Continuados, which would work closely with the Porto Section of the Portuguese Institute of Oncology. At a certain point in the course of the project I was invited to be the medical director of the unit. I was a specialist in internal medi- cine and oncology and I accepted the position on one

32 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

condition: that I should be allowed to take training in palliative care, which at that time was only possible in units outside Portugal. Over the course of 7 months I visited several Euro- pean units: St. Christopher’s Hospice and St. Helena Hospice in England; Intituto Nazionale dei Tumori in Milan; La Foundation Rive-Neuve and the Aubonne Hospital in Switzerland; and Gregorio Maran˜ ón Hospital in Madrid. I believe this was very useful and, in my case, the best approach, because the diversity I saw showed me different realities, different experi- ences, and different styles of palliative care. I concluded that palliative care can be applied in many different conditions, always with the same philosophy and the same principles behind it while the practice is adapted to the local circumstances, and that what is observed in any palliative care service should be taken as an example of what can be done, rather than a model to be copied.

The first unit

Because I finished my training period before the unit was ready, we were allowed to start working with 5 beds belonging to the Radiotherapy Service, which had a total of 25 beds. The staff in that service included the nurses who were keen to work in the future palliative unit, some of whom had had some experience of pallia- tive care in units abroad. Our first patient was admitted on 17 October 1994. This, then, was the day when palliative care started in Portugal. All the personnel, except the chief nurse and myself, were shared between the two services. We started doing inpatient care, outpatient care, and consultation in other services within the hospital. There were various difficulties with this experience:

I Problems arising from the physical/architectural set- up, which did not make it easy for family members to stay with patients, especially at night

I Too few beds for hospital needs

I Different treatment of patients in the same service

I Difficulty in the implementation of specific routines Other types of problems experienced at this stage were:

I Problems relating to misunderstanding of the purpose of the new service

I Referral mainly of patients expected to survive for only a few days

I Frequent use of the unit as a kind of wastebasket, that is, not with the idea of sending patients to a place where they could be more adequately treated but to get a bed free These early days did also have positive aspects:

I The possibility of offering palliative care at all for the first time

I The opportunity of spreading the principles of pallia- tive care more easily, because there was more direct contact with doctors in the other service

I Training the team in more specific work with only a few patients

I Possibility of contact with the reality of palliative care, thus allowing selection (self-selection, at that time) of people who really wanted to go on working in palliative care

I Economy – because the unit was so small it was cheaper to work together with the other service, which made it possible to maintain adequate contin- uous staffing levels of professionals who needed to be represented at all times, mainly nurses, without having too many professionals relative to the number of patients We can conclude that this experience was useful, and perhaps it could be viewed as an example for other centres where only a small unit can be implemented.

The new unit

Finally, the new unit opened on 25 May 1996. We grew step by step as more people were involved in the team (Table 1). Initially, we maintained the same activities, adding to them as circumstances allowed (Table 2). Now we have 20 beds, all in single rooms, which allows a member of any patient’s family or a friend to stay at any time. The unit has had a day centre since 1997: about 20 patients can attend for up to 3 days each week, and they can enjoy many activities.

Table 1

Staff of unit

Doctors

4 – with 1 assigned exclusively to home care

Nurses

24

Nursing auxiliaries

16

Social worker

1

Psychologist

1

Nutritionist

1

Chaplain

1

Driver

1

Porters

7

Volunteers

15

Table 2

Evolution of the assistance to patients activity

 

1995

1996

1997

1998

1999

Inpatient admissions Outpatient clinic observations Internal consultation visits Telephone consultation Home care visits

68

100

221

359

388

 

549

1124

1302

361

596

910

 

449

813

 

212

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 3333

Since 1998 we have offered telephone consultations for the patients being followed by the unit. The patients, their families, or their friends may contact the unit when a problem or a doubt arises, to discuss an adjustment to a medication, or to inform the doctor of the effect of a prescription, for example, 24 hours a day. It is usually possible for them to talk with the physician between 09*E00 and 16*E00 o’clock, and with a nurse at other times. In 1999 we started home care. We intend to make this service one of the most important elements of the unit, so that patients can stay at home where their fami- lies and their own belongings are, that is to say where their lives are centred. However, the traditional extended family with three generations under one roof providing support for all members of the family in diffi- cult times is changing. Families are becoming smaller and smaller; most people work outside the home, mainly in the bigger cities, and there will therefore probably be more and more difficulties in keeping patients at home, as has already happened in other European countries.

Teaching

As this is a pioneer unit in Portugal and in view of its size, it was planned that it should be a teaching centre. As professionals working exclusively in palliative care, we have an obligation to contribute to the spread of knowledge in this field. However, the best thing we can do is to go beyond teaching what can be read in books and reviews and also, most importantly, share our experience. This is why we did not start the multidisci- plinary courses until we had completed 3 years of work as a palliative care team. Our first multidisciplinary course was in October 1997. Since then, we have held four each year. Each course is held for 12 professionals: 6 doctors and 6 nurses. This small number allows contact with the everyday life of the unit and with the patients. Each course involves 35 hours from Monday to Friday in 1 week. Up to August 2000, 144 professionals from all over the country, even from the islands of Madeira and the Azores, had undergone training in 12 courses. We always have many more candidates than we can admit to the courses, which shows the interest people have in palliative care and how much they feel the need of training in this special field. To help staff who work in our oncological centre but had not been able to get a place on any of the multidisciplinary courses we held a theoretical course in 2000, which was attended by 35 professionals. In 2000 we held the first continuing education course for doctors and nurses who had already completed the multidisciplinary course. And in the future we intend to

hold update courses to maintain interest in palliative care and ensure that the knowledge applied is current. Since the beginning of our activities, members of the unit’s staff have participated in many courses, congresses, and other scientific meetings organized by others. And, finally, I teach the palliative care portion of the course for the master’s degree in bioethics at the Medical School of Oporto University. Apart from the courses, many doctors, nurses, social workers, psychologists, and priests spend various periods of time in the unit.

Research

Again, the position this unit occupies in palliative care in Portugal should make research one of its most important activities, on a level with patient assistance and teaching. These two activities should support and be supported continuously by research. However, research takes time to produce results, so that we are not in a hurry to publish research papers, though we are publishing some review papers in Portuguese. However, we have presented some work at congresses of the European Association for Palliative Care and at other congresses, and we intend to start publishing our results soon.

The future

The unit is still evolving: in the future there will be more than 20 beds, and the home care service will be developed and will reach more patients. Teaching of palliative care will remain important, and it is probable that this unit will continue as the main palliative care teaching centre in Portugal. Faculty members of the Oporto Medical Schools have been contacted about the idea of introducing undergraduate palliative care teaching into their curricula, but I have not yet received any answers – this would be a very important step. Research will take up the desired place. The immediate problem is finding people interested in working exclusively in palliative care. Unlike other European countries, Portugal does not have an excess of doctors and nurses, so that recruitment of profes- sionals to the unit will not be easy.

Other remarks

Since the opening of the unit, almost 6 years ago, pallia- tive care has not evolved much further in Portugal. There are a few other experiences, but the overall picture is very poor. The implementation of palliative care has been difficult in most countries, and in

34 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Portugal it will not be any different. Many still see palliative care not as a resource with its own knowledge and skills, but as what is offered in places where nursing and psychological and religious support are the most important aspects whilst the medical input has a secondary, and not especially skilled, role. Some medical oncologists, for example, claim that they should take care of their patients until their death, forgetting that the reality is different in most cases and that the care patients need when curative treatment is no longer useful must be learned, and is often not what they are providing. However, not all patients need to be treated by palliative care specialists. As in other specialties, many patients can be treated by their own physicians with some training, but there are difficult situations that require specialized resources of different types. In addition, research and teaching should be carried out, and usually only specialists have the knowl- edge, the experience, the readiness, and a sufficiently large number of patients for this. Palliative care is now needed in Portugal and must be developed. However, I suspect, unfortunately, that it

will be a long time before a serious effort is made to do this. Nonetheless, something must be done quickly. Palliative care can be provided in many different circumstances. Palliative care units are indispensable, in my view, but home care and inpatient support teams are examples of other options that would be easier to implement. In my opinion, it is more important to do something useful immediately for patients with advanced chronic diseases who are suffering unneces- sarily than to wait for conditions that anyone might imagine to be ideal. When we started, for example, conditions were not ideal, because the unit was not yet ready. So, professionals and hospital staff members with an interest in this field should start however local conditions allow and then improve their situation at the rate that is possible, but without ever forgetting the training needed. I also believe that doctors have a special responsibility, because if they know and apply the principles and skills of palliative care, even alone, they can have a very important impact on the well- being of their patients with chronic advanced diseases.

References

1. Saunders C (1998) Foreword. In:

Doyle D, Hanks GWC, MacDonald N (eds) Oxford Medical Publications, Oxford, pp v–ix

2. World Health Organization (1990) Traitement de la douleur cancéreuse et soins palliatifs. (Série de rapports tech- niques 804) WHO, Geneva

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 3535

objectivos do desenvolvimento do sistema integrado para a avaliação inicial dos doentes oncológicos admitidos em cuidados paliativos

A maioria dos doentes com doenças crónicas avançadas tem múltiplos problemas

resultantes da sua doença e por vezes também dos tratamentos anteriormente efectuados. Acresce que os doentes admitidos em cuidados paliativos apresentam-se em situações muito diversas a nível do estado de consciência, da função cognitiva, do estado emocional, da funcionalidade, etc. Os doentes podem estar muito débeis, receosos ou ansiosos. Há também o problema do trabalho que uma equipa muito ocupada tem de fazer e do tempo que tem disponível para cada doente. Por isso, uma avaliação extensa pode ser impossível e pode constituir um fardo para os doentes. Contudo, para ajudar convenientemente os doentes, é necessário identificar e avaliar rigorosamente os seus problemas principais. Mais tarde, outros problemas de mais baixa prioridade poderão ser abordados se for apropriado.

Para resolver os problemas dos doentes é necessário, em primeiro lugar, reconhecê-los. Existem várias escalas para avaliação de múltiplos sintomas e outras desenhadas para avaliar um sintoma isolado como a dor [10] e a fadiga [11], por exemplo. A extensão e os problemas englobados nessas escalas é variável, embora inevitavelmente tenham pontos comuns, nomeadamente no que se refere aos sintomas físicos mais comuns como dor, dispneia, náuseas, etc. Outro tipo de escalas também com pontos comuns com

as anteriores são as que se destinam a avaliar a qualidade de vida, como a EORTC QLQ-C15-PAL [12].

O objectivo desta tese não é acrescentar uma nova escala às já existentes, embora

também seja necessário desenvolver métodos de avaliação que estejam de acordo com

36 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

o objectivo do trabalho. Este consiste no desenvolvimento de um sistema para avaliação dos principais problemas dos doentes, nas suas várias dimensões que se adapte às circunstâncias dos doentes.

O sistema deve conter instrumentos que possam avaliar os problemas mais importantes

dos doentes com descritores verbais fáceis de compreender por todos os doentes sem

alterações da função cognitiva. Por exemplo, o termo dispneia, incompreensível para

a maioria das pessoas, deve ser substituído por falta de ar. A extensão é também

importante porque pode tornar a avaliação difícil ou cansativa para os doentes mais debilitados ou fastidioso para os que não tenham na altura muitos problemas. A limitação da extensão é um dos objectivos que justifica o desenvolvimento deste sistema.

Há ainda o problema da avaliação dos doentes com alterações cognitivas que impeçam a comunicação eficaz. Este aspecto é particularmente difícil, devido à natureza subjectiva dos sintomas/problemas. No entanto, também estes doentes têm de ser avaliados rigorosamente embora de modo diferente. Para isso é necessário desenvolver métodos de avaliação específicos, adaptados à sua situação. Esta é uma área de intervenção particularmente difícil.

Para avaliar o estado cognitivo há que desenvolver ou utilizar instrumentos já validados que se adeqúem aos objectivos do sistema. Esse estado pode ser óbvio, mas por vezes não é, pelo que as alterações cognitivas podem passar despercebidas ou consideradas erradamente. Nos doentes com um estado de consciência obviamente normal não é necessário rastrear o seu nível de consciência, mas quando não é assim é necessário avaliar esse nível. Também nos doentes que têm alterações cognitivas óbvias, com agitação ou desorientação manifesta, não é necessário fazer qualquer rastreio, mas quando não é assim há que fazê-lo.

A comunicação é um aspecto fundamental nos cuidados de saúde e em cuidados

paliativos este aspecto é particularmente valorizado. A comunicação é um processo contínuo, mas sobretudo nas fases de transição como a da admissão em cuidados paliativos, tem uma importância particular porque a informação que os doentes e os familiares receberam anteriormente é com frequência insuficiente ou mesmo errada

sobre a finalidade desta nova fase do seu tratamento. É natural também que os doentes

e os familiares desejem ser esclarecidos quanto ao que os espera.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 3737

Os cuidados paliativos envolvem os familiares que são afectados pelo sofrimento do seu doente, pelo que também são objecto de avaliação e atenção. No entanto, esse aspecto não será integrado neste sistema que incidirá exclusivamente sobre a avaliação dos doentes.

De acordo com o que anteriormente foi dito, o sistema que nos propomos construir desenvolver-se-á em 5 capítulos, para além deste capítulo introdutório. No segundo capítulo, da comunicação, procuraremos demonstrar a necessidade e o desejo de informação que a maioria dos doentes sentem e a dificuldade com muitas vezes se deparam, através de dois estudos levados a cabo no IPO - Porto nos últimos anos e já publicados. Procura-se mostrar a necessidade de adequar a informação aos desejos dos doentes e não usar princípios rígidos, procurando seguir a vontade e o ritmo destes. Depois, no terceiro capítulo descreve-se o processo de avaliação da consciência tanto ao nível da vigília como do conteúdo. Para avaliar o nível de vigília desenvolveu-se uma escala, entretanto já publicada. Para avaliar a função cognitiva nos doentes com um nível de vigília que permita interacção, introduziu-se um instrumento já em uso na Unidade de Cuidados Paliativos do IPO - Porto, que foi recentemente validado em cuidados paliativos e em português. Depois de definido se o doente tem capacidade para ser avaliado será usado o instrumento descrito no capítulo 4 que foi desenvolvido segundo o método de Delfos, com o envolvimento de peritos internacionais. Para os doentes que não podem ser avaliados directamente por alterações cognitivas foram estudados dois métodos que se descrevem no capítulo 5. Finalmente no capítulo 6 integram-se as diferentes partes do sistema, procurando dar-se uma visão de conjunto e coerência interna a esta ferramenta. Procede-se ainda a uma reflexão sobre a importância que este sistema pode ter na melhoria da qualidade assistencial em cuidados paliativos.

38 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

referências

1 http://www.ine.pt/xportal/xmain?xpid=INE&xpgid

=ine_indicadores&indOcorrCod=0001675&selTab=

tab2 (acedido em 08/06/2009).

2 Geoffrey H. Palliative care: careless use of language undermines our identity. Palliat Med 2008; 22:109-110.

3 Ferraz Gonçalves. Cuidados Paliativos em Oncologia. Arquivos de Medicina 1998; 12 (3):170-173.

4 WHO expert committee report. Cancer pain relief and palliative care. World Health Organization. Geneva

1990.

5 http://www.who.int/cancer/palliative/en/.(acedido em 28/05/2009).

6 Ferraz Gonçalves, Goyanes C. Use of chemotherapy at the end of life in a Portuguese oncology center. Support Care Cancer 2008;16:321–327.

7 Earle CC, Neville BA, Landrum MB, Ayanian JZ, Block SD, Weeks JC. Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 2004;22:315–321.

8 Temel JS, Greer JA, Muzikansky A, et al. Early Palliative Care for Patients with Metastatic Non–Small- Cell Lung Cancer. N Engl J Med 2010;363:733-742.

9 Ostgathe C, Alt-Epping B, Golla H, et al. Non-cancer patients in specialized palliative care in Germany: what are the problems? Palliat Med 2010;25:148-152.

10 Caraceni A, Cherny N, Fainsinger R, Kaasa S, Poulain P, Radbruch L, De Conno F, and the Steering Committee of the EAPC Research Network. Pain Measurement Tools and Methods in Clinical Research in Palliative Care: Recommendations of an Expert Working Group of the European Association of Palliative Care. J Pain Symptom Manage 2002;23:239–255.

11 Radbruch L, Strasser F, Elsner F, Ferraz Gonçalves, Løge , Kaasa, Nauck, Stone P, the Research Steering Committee of the European Association for Palliative Care (EAPC). Fatigue in palliative care patients - an EAPC approach. Palliat Med 2008; 22: 13–32.

12 Groenvold M, Petersen MA, Agronson NK, et al. The de- velopment of the EORTC QLQ-C15-PAL. Eur J Cancer

2006;42:55-64.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 3939

2

COMUNICAÇÃO

40 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 4141

comunicação/informação

A comunicação é um aspecto fundamental nas relações humanas. Na relação dos doentes

com os profissionais de saúde a comunicação reveste-se de grande importância e nos cuidados paliativos é-lhe dada tradicionalmente uma particular relevância.

Demonstrou-se que a qualidade da comunicação tem um efeito positivo no bem-estar

emocional e físico dos doentes. A boa comunicação associa-se à melhoria da satisfação

e ao ajustamento psicológico dos doentes. Para os doentes e suas famílias a comunicação

é uma componente vital da qualidade dos cuidados de fim de vida [1]. Contudo, as atitudes relacionadas com a informação prestada aos doentes diferem muito de país para país e tem variado ao longo do tempo. Por exemplo, nos Estados Unidos da América e nos países do Norte da Europa a informação sobre vários aspectos da

doença é habitual, enquanto nos países do sul da Europa, nomeadamente em Portugal, a situação parece ser diferente. Invocam-se geralmente questões culturais para explicar essas diferenças e elas existem certamente. Mas há que dizer que a situação não

é estática pois tem-se verificado uma evolução no sentido de dar maior informação

aos doentes [3]. O maior acesso à informação, a melhoria da literacia e o maior

envolvimento em ensaios clínicos farão, certamente, com que os doentes venham a possuir

e a exigir maior informação sobre a sua situação.

Na fase de transição para cuidados paliativos há certamente muitas dúvidas e a consequente ansiedade associada. A transição para cuidados paliativos reveste-se de particular dramatismo pelo seu significado. Porque embora os cuidados paliativos possam e devam ser integrados no tratamento dos doentes juntamente com as técnicas curativas, na maioria dos casos ainda significam que a possibilidade de modificar a

42 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

evolução da doença está esgotada. Este facto, tem naturalmente um grande impacto psicológico nos doentes que deve ser explorado.

Embora haja a impressão de que em Portugal a informação prestada aos doentes é

deficiente, é necessário conhecer o que realmente se passa e quais são as preferências dos doentes quanto a este aspecto. É da investigação por nós realizada nesta área que

se dá conta neste capítulo, introduzindo dois artigos já publicados: Diagnosis disclosure

in a Portuguese oncological centre - estudo sobre a prática dos oncologistas de um centro oncológico quanto à informação que prestam aos doentes sobre o seu diagnóstico;

e Breaking bad news: experiences and preferences of advanced cancer patients at a

Portuguese oncology centre - estudo sobre o ponto de vista dos doentes com cancro avançado sobre a informação que receberam. O capítulo termina com uma breve sínteses dos 2 artigos.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 4343

diagnosis disclosure in a portuguese oncological centre

j. ferraz gonçalves, s. castro

Palliative Medicine (2001); 15:35-41

44 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 4545

Palliative Medicine 2001; 15: 35–41

Diagnosis disclosure in a Portuguese oncological centre

J Ferraz Gonçalves Director and S Castro Psychologist, Unidade de Cuidados Continuados, Instituto Português de Oncologia, Porto

Abstract: The disclosure of a diagnosis of cancer to patients is a controversial matter. There have been major differences in practice concerning this issue through time and between cultures. A questionnaire was sent to the doctors of the Oporto Centre of the Portuguese Institute of Oncology in order to assess their attitudes. We received

45 responses (40%) from the 113 questionnaires sent. Of these, 32 (71%) said that

they disclose the diagnosis as a general policy or at the patients’ request, and 13 (29%) disclose it rarely or not at all. The most frequent reason indicated by these 13 physicians was that the disclosure might damage the patients psychologically. Forty-four (98%) doctors inform the family of the diagnosis. Thirty-nine (87%) think that patients are satisfied with the information provided. This study was carried out in one oncological centre only, so it is inappropriate to conclude that this is what happens throughout Portugal. As far as we know, this is the first study in Portugal addressing this area of practice. This subject is a very important topic of research both in Portugal and in other countries, as many published recommendations are not research based.

Key words: breaking bad news; communication; diagnosis disclosure; physician–patient relation

Resumo: A revelação do diagnóstico aos doentes com cancro é um assunto controverso. Tem havido grandes diferenças na prática respeitante a esta questão ao

longo do tempo e entre as diversas culturas. Enviámos um questionário aos médicos do Centro do Porto do Instituto Português de Oncologia para avaliar as suas atitudes. Recebemos 45 respostas (40%) dos 113 questionários enviados. Destes, 32 (71%) dizem que revelam o diagnóstico por princípio ou quando os doentes o pedem e 13 (29%) revelam-no raramente ou nunca. A razão mais frequentemente indicada por estes

13 médicos foi a de que a revelação pode causar dano psicológico aos doentes.

Quarenta e quatro (98%) médicos informam a família do diagnóstico. Trinta e nove (87%) pensam que os doentes estão satisfeitos com a informação dada. Este estudo foi feito num único centro oncológico, por isso não podemos dizer que é isto que se passa, de um modo geral, em Portugal. Tanto quanto sabemos, este é o primeiro estudo realizado em Portugal sobre este aspecto da prática médica. Este é um tópico de investigação muito importante tanto em Portugal como noutros países, porque muitas recomendações práticas publicadas não se baseiam na investigação.

Palavras-chave: dar más notícias; comunicação; revelação do diagnóstico; relação médico–doente

46 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em
46 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos
36 J Ferraz Gonçalves and S Castro
Introduction
mittee of the Portuguese Institute of Oncology –
Oporto Centre.
The disclosure of a diagnosis of cancer to patients
is a controversial matter. The dominant attitude
among physicians has changed over time, and there
have always been voices advocating against it. 1 We
will also find different attitudes when we compare
practice in countries with different cultures. In the
United States and northern European countries, 2–4
for example, the usual practice is to disclose the
diagnosis. However, in other countries, including
those of southern Europe, 4–8 the situation is dif-
ferent: doctors’ attitudes are more paternalistic, and
in many cases they do not disclose the diagnosis.
In Portugal, the current practice seems to be one
of non-disclosure. However, as far as we know, no
research on this subject has been carried out in
Portugal.
Results
The questionnaire was sent to 113 doctors, and
45 responses (40%) were obtained. In Table 1 we
show the specialities and demographic data of the
doctors who returned the questionnaires. There is
a similar percentage in all specialities, with the ex-
ception of radiotherapy (Table 1). Nineteen (42%)
participants added comments, clarifying their views
or adding other hypotheses to those included in the
questionnaire. The questions most commented on
were: the one that asked if doctors disclose the
diagnosis of cancer to the patients, and if not, why
not; and the questions about the patients’ and
families’ participation in therapeutic decisions.
Methods
Among our respondents, 14 (31%) doctors stated
that their policy was to disclose the diagnosis, three
(7%) do not do it at all, 10 (22%) rarely do it and
We conducted a survey in the Oporto Centre of the
Portuguese Institute of Oncology, which is one of
the most important Portuguese oncological centres.
It has 350 beds and about 4000 new patients are
admitted every year. It has services and equipment
equivalent to those of any major European oncolo-
gical centre, including a palliative care unit. This
centre is a public hospital that serves the population
from the whole of northern Portugal. The patients
belong to all social classes and education levels.
A questionnaire (see the Appendix), specifically
designed for this study but not subjected to a pilot
test, was sent to each doctor at the centre who
treated adult patients. Those with other functions,
such as radiologists and pathologists, were exclu-
ded. This study was approved by the Ethics Com-
18 (40%) disclose it only at the patient’s request
(Table 2). A much higher number, 44 (98%),
inform the family about the patient’s diagnosis; in
one case (2%) the answer was omitted. The most
frequent reason indicated by the 13 doctors (34%),
who rarely or never disclose the diagnosis to
patients (Table 3), for so acting was the possibility
of damaging the patients psychologically (11, 85%).
The comments added to the questions about the
disclosure to patients and the reasons for not dis-
closing the cancer diagnosis, again, show a concern
with the eventual psychological damage that the dis-
closure might produce. Some examples of these
comments can be seen in Table 4.
To the question ‘do your patients often request
more information from you?’ 29 (64%) answered
Table 1
Doctors’ speciality and demographic data
Speciality
No. of questionnaires
sent
No. of questionnaires
returned
Total returned
(%)
Returned per speciality
(%)
Surgery
52
22
49
42
Medical oncology
24
12
27
50
Radiotherapy
24
5
11
21
Other
13
6
13
46
Total
113
45
100
Age: mean 46 years (range: 31–65 years); median 45 years.
Sex: male 27 (60%); female 17 (38%); not stated 1 (2%).

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 4747

Diagnosis disclosure in a Portuguese oncological centre 37 Table 2 Diagnosis disclosure to the patient
Diagnosis disclosure in a Portuguese oncological centre
37
Table 2
Diagnosis disclosure to the patient
No. (%)
Yes
No
Rarely
At patient’s request
14 (31)
3 (7)
10 (22)
18 (40)
Table 3
Reasons invoked for rare or non-disclosure (13
doctors)
Reason
Yes
No
Difficulties in discussing the diagnosis
Not prepared to deal with the situation
Not useful to the patient
Psychologically deleterious
Not having enough time
Others
0
13
0
13
3
10
11
2
2
11
4
9
Table 4 Examples of comments to questionnaire questions
1 and 2
yes and 16 (36%) answered no. These 16 doctors
presume that their patients are satisfied with the
information they get, or simply do not wish any
more information at all (Table 5). This agrees with
the answers to question 4, to which 39 (87%) said
that they think their patients are satisfied with the
information they give them.
Forty-one doctors (91%) think that patients
should participate in decisions about treatment and
four (9%) think they should not. The reasons for
these opinions are shown in Tables 6 and 7. Only 25
(56%) thought that family members should parti-
cipate in making treatment decisions. The few
comments about the patients’ participation in thera-
peutic decisions suggest that they should not parti-
cipate or even influence them. It was, however,
conceded that if offered two equally effective treat-
ments the patient can choose the one that is more
bearable for him or her. Similar comments were
made about family participation in these decisions.
One respondent stated that the decision belongs to
doctors, and that family can be involved to encour-
age the patient to accept the recommended treat-
ment and to endure its toxicity.
The decision to disclose the diagnosis should consider
the psychological, intellectual, cultural and social
conditions of the patient
It is necessary to inform the patients gradually and with
sensitivity and gentleness, without coldness
After the information has been provided, psychological
support is needed
Most patients are not prepared to receive the
information of a malignant disease
The information must be given when it is useful to the
patient
The information can cause depression
Never use the word cancer
Patients often ask for information to feel hopeful in their
lives (we understand this statement means that the
patient does not really want the truth but a negative
answer)
Table 6 Reasons why patients should participate in treat-
ment decisions (41 doctors)
To preserve patient autonomy
To make the adherence to treatment easier
To protect the doctor from legal problems
To allow the patient to prepare himself for adverse
effects
To allow the patient to refuse the treatment
eventually
Other
25
35
19
30
23
4
Table 5 Reasons to explain why patients often do not re-
quest more information from their doctors (16 doctors)
Table 7 Reasons why patients should not participate in
treatment decisions (four doctors)
They are satisfied with the information they have
been given
They are not at ease to ask questions
They do not wish for more information
They feel you do not have enough time to talk to them
They think they will not understand the information
you can give
7
1
5
2
0
It is difficult for you to discuss treatment with
patients
You think it is not useful to patients
You do not have enough time to discuss treatment
with the patients
The discussion might damage the patients
psychologically
Other
1
2
4
1
1

48 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

38 J Ferraz Gonçalves and S Castro

Discussion

This study was carried out in an oncological centre, where informing patients about their diagnoses is an everyday matter. We only had a 40% response rate, which is rather low although similar to that obtained in at least one very important paper. 2 This must be borne in mind when considering our findings. The reason why radio- therapists participated less than other specialists is not clear. The percentage of doctors (71%) who disclose the diagnosis of cancer as their general policy or when requested by patients is smaller than that found in other studies in which questionnaires were add- ressed to doctors, 24 even some of those carried out in southern European countries. 4 But the practice of informing the family almost always (98%) is the same as what usually happens in those countries. 5 Doctors’ most frequently indicated the reason for rarely or never disclosing the diagnosis was that it might damage the patients psychologically. It seems that those doctors prefer to protect the patients from possible psychological damage rather than to respect their autonomy. A lack of training in dealing with requests for information was not suggested as a reason for these responses. Doctors whose expe- rience is not to have frequent requests for informa- tion feel that this happens because the patients are satisfied with the information they get or because they just do not want more information at all. Indeed, 87% think that patients are satisfied with the information provided and this percentage is higher than those who inform their patients as a general policy or when requested. The comments also show a concern for the patients’ protection:

‘inform with sensitivity and gentleness’; ‘without coldness’; ‘inform those we think have sufficient psy- chological and intellectual resources’; ‘the need for psychological support’; ‘the information can cause depression’; ‘never use the word cancer’. Again, a decision not to inform seems to be due not to a lack of training or difficulty in dealing with the situation but to have its roots in a protective attitude to the patients, in order not to affect them psychologically and may be understood as what they really want. In fact, in a study conducted in Spain, 6 with a culture similar to that of Portugal, of the 68% of 97 patients

admitted to an oncological service and a palliative care unit who had not been informed of their diag- nosis, 42% did not want to receive more infor- mation. An alternative explanation of our results is, perhaps an element of denial, because breaking bad news is recognized by most experts as being difficult and causing some degree of discomfort, even for experienced professionals; 9 in Portugal this problem is not addressed in any way, except in some limited educational activity. It is possible that doctors are hiding their own difficulties in dealing with these aspects of communication behind a paternalistic attitude. Communication with patients can be learned, but denial can delay or prevent the decision to act accordingly. However, we must be very care- ful with the interpretation of the results obtained and avoid preconceptions. It seems to be a contradiction that 91% of the doctors think that patients should participate in treatment decisions, because this percentage is higher than those who inform patients, and without information about their disease it is not possible for patients to decide rationally about the treatment. On the other hand, doctors think that family mem- bers, who are almost always informed, should parti- cipate in treatment decisions in a much smaller proportion of cases (56%). The comments about the decisions also have a paternalistic character when they state that patients should not decide about treatment. However, these comments repre- sent a minority because 91% think that patients should participate in those decisions. The family is seen as a possible doctor ally, facilitating the ad- herence to treatment and helping the patient to endure the treatment decided on by the doctor. The available data show that Portuguese doctors, who work in this oncological centre, disclose the diagnosis to patients less frequently than doctors from other countries, including those of the southern Europe, such as Greece. This study was carried out in one centre only so it is inappropriate to generalize, but the result obtained agrees with, or is even higher than, what we expected was hap- pening in Portugal. This study reflects the way in which doctors see themselves, not necessarily what happens, and is more important, in our point of view, if the infor- mation is tailored to the desire of the individual

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 4949

Diagnosis disclosure in a Portuguese oncological centre

39

patient. So, it is also very important to know what Portuguese patients think about medical informa- tion issues, not only disclosure of the diagnosis but also about the prognosis and their participation in therapeutic decisions. The research on these topics is very important and is not extensive. Most of the medical literature providing practical advice is not research based. 10 To explain the differences in attitude between the countries in what concerns cancer diagnosis disclosure, cultural causes have been indicated. However, perhaps these cannot explain, at least completely, those differences, because if we go back to the 1950s and 1960s we find that in the USA most doctors used not to disclose a cancer diagnosis to their patients, but nowadays almost all do so. 2 The reasons for this change are certainly many: the spread of information in the media about cancer treatment advances (real or not) and the treatment options available in some cases, where the choice only depends on patients’ wish (for example, con- servative breast surgery); the spread of information on patients’ rights and the growing demand for quality of medical services; the patients’ enrolment in research protocols demanding informed consent; and legal matters that involve the medical pro- fession. These matters are progressively arising in Portugal and other countries, and we believe that, as time goes by, the picture concerning cancer diag- nosis disclosure will be similar to that already pre- sent in the USA and northern European countries.

References

1 Reiser SJ. Words as scalpels: transmitting evidence in the clinical dialogue. Ann Intern Med 1980; 92 :

837–42.

2 Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM. Changes in physicians’ attitudes toward telling the cancer patient. J Am Med Assoc 1979; 241 : 897–900.

3 Loge JH, Kaasa S, Ekeberg Ø, Falkum E, Hytten K. Attitudes toward informing the cancer patient – a survey of Norwegian physicians. Eur J Cancer 1996; 3 2A : 1344–48.

4 Thomsen OØ, Wulff HR, Martin A, Singer PA. What do gastroenterologists in Europe tell cancer patients? Lancet 1993; 341 : 473–76.

5 Mystakidou K, Liossi C, Viachos L, Papadimitrou J. Disclosure of diagnostic information to cancer patients in Greece. Palliat Med 1996; 10 : 195–200.

6 Cortés CC, Olarte JMN. Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients’ responses. Palliat Med 1994; 8 : 39–44.

7 Estapé J, Palombo H, Hernández E et al. Cancer diagnosis disclosure in a Spanish hospital. Ann Oncol 1992; 3 : 451–54.

8 Surbone A. Truth telling to the patient. J Am Med Assoc 1992; 268 : 1661–62.

9 Buckman R. Communication in palliative care: a practical guide. In: Doyle D, Hanks GWC, MacDonald N eds. Oxford textbook of palliative medicine, 2nd edn. Oxford: Oxford University Press, 1998: 47–61. 10 Ptacek JT, Eberhardt RL. Breaking bad news. J Am Med Assoc 1996; 276 : 496–502.

50 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em
50 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos
40 J Ferraz Gonçalves and S Castro
Appendix
Diagnosis disclosure – survey
Age:
Speciality:
Gender:
Service:
1. Do you disclose the diagnosis to cancer patients?
Yes
No
Rarely
At the patient’s request
2. If the answer was No or Rarely, indicate the reasons:
You find difficult to disclose the diagnosis
You were not prepared to deal with this information
You do not find useful to the patient to know that information
The disclosure might damage the patient psychologically
You do not have time enough
Other
Specify:
3. Do you disclose the diagnosis to the family of cancer patients?
Yes
No
4. Do you think that your patients are satisfied with the information you give them?
Yes
No
5. Do your patients often request more information from you?
Yes □
No
(if you answered Yes, go to question 7)
6. You think your patients do not request more information from you often, because:
They are satisfied with the information they have been given
They are not at ease to ask questions
They do not wish more information
They feel you do not have enough time to talk to them
They think they will not understand the information you can give
Other
Specify:
Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos
Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 5151
Diagnosis disclosure in a Portuguese oncological centre
41
.
Do you think patients should participate in treatment decisions?
Yes □
No
If your answer is Yes, indicate the alternative(s):
To preserve the patients’ autonomy
To make easier the adherence to treatment
To protect the doctor from legal problems
To allow the patient to prepare himself to adverse effects
To allow the patient to refuse the treatment eventually
Other
Specify:
If you answered No, indicate the alternative(s):
It is difficult for you to discuss treatment with patients
You think it is not useful to patients
You do not have enough time to discuss treatment with the patients
The discussion might damage the patients psychologically
Other
Specify:
.
Do you think that the family should participate in the decisions concerning treatment?
Yes
No

52 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 5353

breaking bad news: experiences and preferences of advanced cancer patients at a portuguese oncology centre

ferraz gonçalves, ágata marques, sónia rocha, pedro leitão, teresa mesquita, susana moutinho

Palliative Medicine (2005); 19:526-531

54 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 5555

Palliative Medicine 2005; 19: 526 /531

Breaking bad news: experiences and preferences of advanced cancer patients at a Portuguese oncology centre

´

Ferraz Gonc¸ alves , A gata Marques , So´ nia Rocha , Pedro Leita˜ o , Teresa Mesquita and Susana Moutinho

Palliative Care Unit, Portuguese Institute of Oncology, Oporto

The disclosure of information to patients about diagnosis and prognosis and other aspects

of care is still a matter of debate. We have conducted a study in advanced cancer patients

about their experiences and preferences concerning this issue. A questionnaire was developed and completed during the first appointment in the outpatient clinic of an

oncology centre’s palliative care unit, before the patient had any contact with the staff of the unit. The study was conducted on a convenience sample of 47 patients. We found that 34 (72%) of those patients thought they had been informed of their diagnosis, most of them

by the hospital doctor. However, not all stated the diagnosis in a manner clearly showing

that they were aware of the nature of their disease. Most patients were with a family member when the diagnosis was disclosed, which is what the majority had preferred. Of the 13 uninformed patients, only one preferred to remain uninformed. Most patients (89%) participated in decisions concerning treatment, although only 68% thought they should have participated. Some 39 patients (83%) were informed that they were being referred to the palliative care unit, but surprisingly only eight had received an explanation of the unit’s function. We concluded that, although most patients had been informed of their disease, there remains many problems, the most important of which, in our view, is the difference between the information provided and the patients’ needs.

A revelac¸ a˜ o da informac¸ a˜ o sobre o diagno´ stico o progno´ stico e outros aspectos dos

cuidados e´ ainda um assunto em debate. Realiza´ mos um estudo em doentes com cancro avanc¸ ado sobre as suas experieˆ ncias e prefereˆ ncias no que diz respeito a este tema. Foi desenvolvido um questiona´ rio que foi aplicado na primeira consulta externa de uma unidade

de cuidados paliativos de um centro oncolo´ gico, antes de terem contacto com o pessoal da

unidade. O estudo foi realizado numa amostra de convenieˆ ncia de 47 doentes. Constata´ mos que 34 (72%) desses doentes pensavam que tinham sido informados do seu diagno´ stico, a maioria pelo me´ dico do hospital. Contudo, nem todos nomearam o diagno´ stico de um modo que mostrasse claramente que tinham noc¸ a˜ o da natureza da sua doenc¸ a. A maioria dos doentes estava com um familiar quando o diagno´ stico foi revelado e era assim que a maior parte preferia. Dos 13 doentes na˜ o informados so´ um preferia manter-se sem informac¸ a˜ o. A maior parte dos doentes (89%) participou nas deciso˜ es terapeˆ uticas, embora so´ 68% pensasse que devia ter participado. Trinta e nove doentes (83%) foram informados de que tinham sido referenciados para a unidade de cuidados paliativos, mas surpreendentemente so´ oito tinham tido uma explicac¸ a˜ o sobre a

func¸ a˜ o da unidade. Concluı´mos que embora a maioria dos doentes tenha sido informada da sua doenc¸ a ha´ ainda muitos problemas, sendo o mais importante, do nosso ponto de vista,

a diferenc¸ a entre a informac¸ a˜ o prestada e as necessidades dos doentes. Palliative Medicine 2005; 19: 526 / 531

Key words: breaking bad news; cancer patients; cultural issues; information disclosure; palliative care patients

Address for correspondence: Dr Ferraz Gonc¸ alves, Unidade de Cuidados Continuados, Instituto Portugueˆs de Oncologia, Rua Dr Anto´nio Bernardino de Almeida, 4200-072 Porto, Portugal. E-mail: ferrazg@netcabo.pt

56 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Introduction

The information delivered to cancer patients is still a matter of controversy, with wide cultural differences. In northern European countries, 1,2 and the US, 3 most doctors disclose the diagnosis as standard practice, but in southern and eastern European countries, 2,4,5 the attitude is more paternalistic and patients are often ‘protected’ from such information. However, even in those countries where the usual practice is now to disclose the diagnosis, a few decades ago the attitude was the opposite. 3 This shows that the problem of information can change with time. There are also differences between countries relative to patients and families’ preferences for the type of infor- mation they require. A study in a palliative care setting comparing attitudes in Spain and Canada, 6 concluded that the majority of Canadian patients preferred to be clearly informed, while the Spanish patients placed less value on full disclosure. In the same study, family members in Canada agreed with the detailed information to patients, while in Spain 89% of family members indicated that full disclosure was not important to the patient. A few years ago, we conducted a survey of doctors at the Oporto Centre of the Portuguese Institute of Oncology concerning the disclosure of diagnoses to patients. 7 In that study, 71% of doctors stated that they always, or at the patient’s request, disclosed a cancer diagnosis and most doctors who rarely or never disclosed did not do so because they thought that the information could be psychologically deleterious. However, uncer- tainty can be worse than bad news, 8 and some patients assume that a non-threatening diagnosis would be disclosed to them and the absence of such a disclosure is taken to indicate that their condition must be serious. 9 Non-disclosure isolates patients as it excludes them from the discussion of problems that probably concern them most. On the other hand, there is a minority of patients who prefer to remain uninformed, and that must be respected as that is the strategy they have evolved to maintain hope. For those who lose hope of a cure or longer life due to the disclosure, hope can be kept alive through other aspects, such as their physician not abandoning them, their remaining free from significant suffering, being with their family and close friends and having time to settle matters important to them. That survey reflected the view of doctors, which can be very different to patients’ views. Therefore, the obvious next step was to ask patients for their opinion concerning the quantity and quality of information they receive from health professionals and their preferences. Cultural issues are relevant factors in the attitudes of doctors, patients and their families in relation to the disclosure of information. That is why it is important to add data

Breaking bad news 527

from different countries, and that is the reason providing justification for this study.

Methods

A survey was conducted between January 2002 and June 2003 on a convenience sample of patients referred to the outpatient clinic of our palliative care unit. 10 This is a palliative care unit included in an oncology centre; therefore all patients had cancer as their primary diagnosis. All patients were aged 15 or over, as younger patients are treated in the paediatric service. A questionnaire was specifically designed for this study to acquire the information considered relevant in an exploratory survey. The aim of the survey was to obtain patient preference regarding information and to compare this with what actually occurs. The broad topics of the questionnaire included: who should be informed first when a life threatening disease like cancer is diagnosed; who should and who actually did convey the information; where the information was and where it should have been conveyed; who was and who should have been with the patient; participation in the treatment decision-making process; information provided on palliative care; and a request to name the diagnosed disease. Patients were addressed when they arrived for the first time at the outpatient clinic, before they had any contact with the health professionals of the unit. Psychology students undergoing long-term training in the unit presented the questionnaire to the patients. Patients that were very frail, bedridden or suffering cognitive failure, as assessed by the shortened version of the Confusion Assessment Method, 11 were excluded. A descriptive study of all variables included in the study was performed. Chi-square and Fisher’s exact test were used to compare categorical variables with the status of informed or not informed patients. Age and follow-up time at the oncology centre, before admission to the palliative care unit, were compared between informed and uninformed patients using the Mann / Whitney U -test. The ethics committee of the hospital approved this study.

Results

The survey included 47 patients, 21 males (45%) and 26 females (55%); their median age was 66 years (range:

21 /86 years); 39 were married (83%), six single (13%) and two widowed (4%). The median follow-up time at the oncology centre before admission to the palliative care unit was 16 months (range: 2 /195).

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 5757

528 F Gonc¸ al v es et al.

All patients preferred the questions to be read aloud by the psychology students instead of filling the question- naires in themselves. Thirty-four patients (72%) stated that they had been informed and 13 (28%) that they had not been informed of their diagnosis.

Disclosure of the diagnosis Twenty-six (55%) stated that patients should be the first person to be informed, whereas 21 (45%) preferred a family member or a friend. Most patients (41 /87%) thought that the information should be disclosed by a doctor and no one chose a nurse or a social worker. Details regarding what actually occurred and the pre- ferred options for diagnosis disclosure can be seen in Table 1. Nineteen patients (56%) stated that they were surprised with the information, while 15 (44%) suspected the diagnosis. Most patients (68%) received the informa- tion at the outpatient clinic, only two received it in an inpatient setting, three at home and one in another place; the three patients who received the information at home were among those informed by a family member, as expected. Most patients preferred to be with a family member when the diagnosis was disclosed and this was what actually occurred, but there were differences between the preferred option and the actual experience (Table 2). We did not find any correlation between information and sex, marital status, age or the follow-up time at the oncology centre before admission to the palliative care unit.

Information and participation in treatment decision- making process Forty-two patients (89%) were always informed about treatment and two sometimes; therefore only three (6%) were never informed. Twenty-nine patients (62%) always participated in decisions regarding treatment and two participated sometimes; 15 (32%) never participated in decisions regarding treatment (one piece of data missing). Only 32 (68%) thought they should participate in those decisions, 23 (49%) thought that close family members should participate, and 10 (21%) that only doctors should

Table 1 Who should communicate information about diag- nosis? Actual experience and preferred options of the 34 informed patients

Table 2 Actual experience and preferred option of the 34 informed patients on who should be with them when the diagnosis is disclosed

 

Actual experience

Preferred option

n (%)*

n

(%)

Family member

22 (65)

19 (61)

Friend

2 (6)

0 (0)

Alone

8 (24)

3 (10)

Other professionals

8 (24)

1 (3)

Other patients

0 (0)

1 (3)

Indifferent

/

7 (23)

*The sum of the actual experience items does not total 34 (or 100%) because some patients were with more than one person.

take the decisions. Seven patients (15%) refused proposed treatments.

Effectiveness of the information For 19 patients (56%), the information was disclosed in an acceptable manner, clearly and sensitively, whereas 15 (44%) found the disclosure poorly carried out. However, none of the latter commented further on why they deemed it incorrect. Only one of 13 uninformed patients preferred to remain so. This group of patients was not informed because they were not at ease to ask, the information was refused, they felt they were tricked, the professionals tried not to answer the questions or the information was unclear. On the other hand, five of the 34 informed patients preferred that they had not been informed. Therefore, only six of the 47 patients did not want to know (Table 3). The 34 informed patients stated they had one of the following: cancer / 15 (44%); ‘a tumour’ / 10 (29%); ‘a bad disease’ / one (3%); ‘other’ / seven (21%); ‘do not know’ / one (3%). The 13 uninformed patients stated they had one of the following: ‘cancer’ / two (15%); ‘tumour’ / 0; ‘other’ / four (31%); ‘do not know’ / seven (54%). If we consider all patients stating ‘cancer’, ‘tumour’ and ‘bad disease’ to be informed and all patients stating ‘they do not know’ or ‘other’ to be uninformed then the results for informed patients are as follows: 26 (76%) are really informed and eight (24%) are not informed, and for uninformed patients: two (15%) are informed and 11 (85%) are not informed; the

 

Actual experience

Preferred option

Table 3 Information obtained and patients’ preferences

n (%)

n (%)

Family doctor

8 (24)

17 (50)

Patients’ preferences

Hospital doctor

19 (56)

10 (29)

Any doctor

/

3 (9)

To be informed n (%)

Not to be informed

Psychologist

0 (0)

1 (3)

n

(%)

Nurse

2 (6)

0 (0)

Social worker

0 (0)

0 (0)

Informed patients (n / 34)

29

(85)

5 (15)

Family member

4 (12)

0 (0)

Uninformed patients ( n /13) 12 (92)

1 (8)

Other

1 (3)

3 (9)

Total ( n /47)

41 (87)

6 (13)

58 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

difference between the two groups was significant (P B/ 0.001) (Table 3). Regarding the referral to palliative care, 39 patients (83%) were informed of the referral, but only eight (17%) had received an explanation regarding the pallia- tive care unit.

Discussion

The percentage of patients considering themselves to be informed (72%) is similar to the percentage of doctors (71%) that always, or at the patients’ request, disclosed the diagnosis in a former study carried out at our hospital. 7 This number is higher than that observed in a Spanish study about ten years ago, where only 32% of the patients with advanced cancer had been informed of the nature of their disease. 12 This is surprising because Spanish culture is deemed to be similar in many aspects to Portuguese culture. It seems unlikely that the ten years separating these two studies can explain the difference. Moreover, 42% of the uninformed patients did not want to receive more information, 12 which again contrasts with our observa- tion that only one of the 13 uninformed patients (8%) clearly preferred to remain uninformed. The reasons why those patients were not informed were related to the doctors’ attitude and a lack of proactive effort to find out the patients’ information needs, which can be inferred from the manner in which the patients answered this question. On the other hand, five of the informed patients preferred that the information had not been disclosed. Therefore, only a minority of the patients did not want to be informed. Usually patients prefer to be informed by a doctor, and most prefer the family doctor, probably because they are more familiar with them, as patients do not like to be informed by unknown doctors. 13 However, most are informed by a hospital doctor, as demon- strated in this and other studies. 14 16 Doctors are, in fact, the preferred person to convey the informa- tion. 17,18 The study of Yun et al ., 17 which explores the reasons for this preference, showed that the most important factor is the doctor’s understanding of the disease and capacity to explain the entire situation; other reasons included trust placed in the doctor, the doctor’s awareness of the patient’s emotional, psycho- logical, social and physical situation, and the duty of doctors to provide information. Most patients were informed about treatments and only a minority did not participate in decisions concerning those treatments. But many patients think that they should not participate in those decisions and that only doctors should make such decisions, as observed in other studies; 8,11 although in one study, 8

Breaking bad news 529

this preference was limited to older patients. The encouragement to participate in treatment decision- making can be associated with higher levels of anxiety, which can persist for at least two weeks. 19 In the previous study of doctors at our hospital, 7 91% thought that patients should participate in the deci- sions regarding treatment, which was a higher percen- tage than that recorded for doctors who always, or on request, informed patients (70%); this seems a contra- dictory fact given that patients need information to decide rationally; it appears to be the contrary to the patients’ wishes as observed herein. Sometimes doctors are not very effective in informing patients, as shown by the difference recorded between the information delivered and the patients’ needs, i.e., there were patients informed that did not want to be informed and patients not informed that had wanted to be informed. These observations are very important because the issue is not the disclosure of information but matching it to the will of patients. Also, the surprise that the diagnosis caused in many patients suggests a lack of appropriate patient preparation concerning the possi- bility of a diagnosis of cancer during the period of diagnostic tests. 18 Furthermore, many patients thought they were poorly informed, without commenting further on why they thought so. This is an important issue because a poor or insensitive disclosure of information may have a negative emotional impact. Patients satisfied with diagnosis communication reported less emotional distress than patients who would have preferred differ- ent. 18 There are, however, other aspects, besides the way the information was disclosed, which are considered of greater importance, such as emotional support and a shorter period of time between seeking medical assistance and the confirmation of cancer. 13,17,18 Also important for patient emotional support is the certainty that the physician will not abandon the patient and will be available to answer all questions. 13 The communication of a poor prognosis is an even more difficult task that doctors often avoid. That is probably the explanation why only a few patients were aware of why they had been referred to the palliative care unit, even when they knew their diagnosis and partici- pated in the treatment decisions. This is not exclusive to our hospital. 19,20 For example, Cassileth et al . found that more patients receiving curative radiotherapy tended to provide a correct diagnosis than patients receiving palliative radiotherapy, 20 which was also interpreted by the authors as being due to the difficulties that doctors have communicating an adverse prognosis. Although physicians often state that non-disclosure is a means of protecting patients, in fact there is a reluctance to give bad news, especially in the transition from curative or life prolonging therapy to symptomatic treatment. 21 An

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 5959

530 F Gonc¸ al v es et al.

alternative or complementary explanation for these observations is denial amongst patients. 22

Conclusion

One important limitation of this study is the small number of patients, which raises questions about the external validity of the data and whether the findings can be extrapolated to Portuguese cancer patients as a whole. This said, we tentatively conclude that most Portuguese cancer patients want to be informed of their diagnosis and want to participate in decisions regarding treatment. However, there are also some patients who do not want that, mainly in relation to treatment decision-making. Most patients wish to be with a family member, but not with other health professionals. Some patients stated they had been informed but gave ambiguous answers when asked to name their disease, which does not necessarily mean that they were wrong but casts doubt on the correct nature of their information. Communicating with cancer patients and, in particu- lar, breaking bad news is a very important aspect of the patient / doctor relationship. However, it is often ne- glected in the training of doctors. Many people, including health professionals, think that the art of communication is a natural skill, ignoring the fact that, just as with other aspects of patient care, it can be learned. There are many general guidelines published on how to break bad news, 23 28 which provide general basic knowledge on how to communicate properly, but it is also necessary to learn via practice, through basic programmes, 29,30 with follow-up and consolidation. 31 Perhaps the most important findings of this study, also verified in all other studies on the problem of information disclosure, are the large differences observed in patients’ preferences. Even when there is a clear preference on a particular aspect, there is never unanimity. Therefore, the data provided by studies of information preferred by patients in different populations should be seen only as marking out trends or general indications, because in the presence of a particular patient we do not know what he or she wants before we try to find out. Patient preference should not be assumed based on these general data. These studies, important as they are, show popula- tion data, which do not necessarily encompass individual needs. The findings of this work can be relevant to anyone working with cancer patients. It adds data relative to patients of a southern European environment, which does not seem to match, at least in those aspects statistically handled, other cultures deemed to be similar, such as that of neighbouring Spain.

Acknowledgements This study was supported in part by the North Section of the Portuguese League Against the Cancer.

References

´

1 Loge JH, Kaasa S, Ekeberg Ø/ , Falkum E, Hytten K. Attitudes toward informing the cancer patient / a survey

of Norwegian physicians. Eur J Cancer 1996; 32A:

1344 /48.

2 Thomsen OØ, Wulff HR, Martin A, Singer P. What do

gastroenterologists in Europe tell cancer patients? Lancet 1993; 341: 473 / 76.

3 Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennet JM. Changes in physicians’ attitudes toward telling the cancer patient. JAMA 1979; 241: 897 / 900.

4 Estape´ J, Palombo H, Herna´ndez E et al . Cancer diagnosis disclosure in a Spanish hospital. Ann Oncol 1992; 3: 451 / 54.

5 Mystakidou K, Liossi C, Viachos L, Papadimitriou J. Disclosure of diagnostic information to cancer patients in Greece. Palliat Med 1996; 10: 195 /200.

6 Fainsinger RL, Nu´ n˜ ez-Olarte JM, Demoissac DM. The cultural differences in perceived value of disclosure and cognition: Spain and Canada. J Palliat Med 2003; 19:

43 / 48.

7 Ferraz Gonc¸ alves J, Castro S. Diagnosis disclosure in a Portuguese oncological centre. Palliat Med 2001; 15: 35 /

41.

8 Cassileth BR, ZurpKis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med 1980; 92: 832 /36.

9 McIntosh J. Patients’ awareness and desire for informa- tion about diagnosed but undisclosed malignant disease. Lancet 1976; ii: 300 / 303.

10 Ferraz Gonc¸ alves JA. A Portuguese palliative care unit. Support Care Cancer 2001; 9: 4 / 7.

11 Inouye SK, van Dick CH, Alessi CA, Balkin S, Siegal AP, Horwitz RI. Clarifying confusion: the confusion assessment method. Ann Intern Med 1990; 113 : 941 /48.

12 Centeno-Corte´s C, Nu´ n˜ ez-Olarte JM. Questioning diag- nosis disclosure in terminal cancer patients. Palliat Med 1994; 8: 39 /44.

13 Sardell AN, Trierweiler SJ. Disclosing the cancer diag- nosis: procedures that influence patient hopefulness. Cancer 1993; 72: 3355 /65.

14 Chan A, Wooddruff RK. Communicating with patients with advanced cancer. J Palliat Care 1997; 13: 29 / 33.

15 Lind SE, Good MJD, Seidel S, Csordas T, Good BJ. Telling the diagnosis of cancer. J Clin Oncol 1989; 7:

583 /89.

16 Barnett MM. Effect of breaking bad news on patients’ perceptions of doctors. J R Soc Med 2002; 95: 343 / 47.

17 Yun YH, Lee CG, Kim S, et al . The attitudes of cancer patients and their families toward the disclosure of terminal illness. J Clin Oncol 2004; 22: 307 / 14.

60 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

18 Butow PN, Kazemi JN, Beeney LJ, Griffin AM, Dunn SM, Tattersall MHN. When the diagnosis is cancer:

patient communication experiences and preferences. Cancer 1996; 77: 2630 / 37.

19 Gattellari M, Voigt KJ, Butow PN, Tattersall MHN. When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol 2002; 20 : 503 /13.

20 Cassileth BR, Volckmar D, Goodman RL. The effect of experience on radiation therapy patients’ desire for information. Int J Radiat Oncol Biol Phys 1980; 6 :

493 /96.

21 Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication in palliative

care. Palliat Med 2002; 16 : 297 /303.

22 Jones JS. Telling the right patient. Br Med J 1981; 283:

291 /92.

23 Faulkner A, Maguire P, Regnard C. Breaking bad news / a flow diagram. Palliat Med 1994; 8: 145 /51.

24 Richards MA, Ramirez AJ, Degner LF, Fallowfield LJ, Maher EJ, Neuberger J. Offering choice of treatment to patients with cancer. A review based on a symposium held at the 10th Annual Conference of the British

Breaking bad news 531

Psychosocial Oncology Group, December 1993. Eur J Cancer 1995; 31A : 112 /16.

25 Girgis A, Sanson-Fisher RW. Breaking bad news: con- sensus guidelines for medical practitioners. J Clin Oncol 1995; 13 : 2449 / 56.

26 Fallowfield L. Giving sad and bad news. Lancet 1993; 341 : 476 /78.

27 Creagan ET. How to break bad news / and not de- vastate the patient. Mayo Clin Proc 1994; 69: 1015 /17.

28 Buckman R. How to break bad news . London: Pan Books, 1992.

29 Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R. Efficacy of a cancer research UK communica- tion skills training model for oncologists: a randomised controlled trial. Lancet 2002; 359: 650 /56.

30 Jenkins V, Fallowfield L. Can communication skills

training alter physicians’ beliefs and behaviour in clinics?

J

Clin Oncol 2002; 20 : 765 / 69.

31 Razavi D, Merckaert I, Marchal S, et al . How to optimize physicians’ communication skills in cancer care: results of a randomized study assessing the useful- ness of post-training consolidation workshops. J Clin Oncol 2003; 21 : 3141 / 49.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 6161

síntese

Tomando estes dois estudos em conjunto pode concluir-se que a informação prestada aos doentes não está muitas vezes de acordo com os seus desejos.

No primeiro estudo, uma razão frequentemente invocada pelos médicos para não dar a informação aos doentes é a possibilidade de lhes causar dano psicológico o que está em contradição com os dados da investigação como referido anteriormente. Não esclarecer os doentes quando esse é o seu desejo pode ter boas intensões e é frequentemente apoiado pelos familiares. Pode, porém, representar uma defesa dos próprios médicos porque a comunicação reveste-se de aspectos muitos difíceis, sobretudo dar más notícias. A investigação, no entanto, sugere que o facto de os doentes não terem uma ideia, pelo menos em termos gerais, da sua situação acarreta muitas consequências. Entre essas consequências estão internamentos desnecessários, aumento da proporção de mortes hospitalares e referenciações tardias para cuidados paliativos ou mesmo a sua ausência [6]. Pode haver também consequências psicológicas, como desconfiança a sentimentos de abandono [6].

No segundo estudo verificou-se que 87% dos doentes desejavam ser informados, enquanto só 72% tinham sido informados. Os que não tinham sido informados referiram que não estavam à vontade para perguntar, a informação foi recusada, foi pouco clara ou porque se sentiram enganados. Verificou-se também que alguns dos doentes que foram informados teriam preferido não o ter sido e vice-versa. Este ponto é muito importante porque o principal não é ser ou não ser informado mas ver satisfeitas as

62 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

suas necessidades informativas para melhor lidar com a situação. Essas necessidades são variáveis e alguns doentes lidam melhor com a situação sem informação. Há ainda a acrescentar que a informação não pode ser vista como pontual, mas sim como progressiva e contínua, podendo os desejos do doente mudar com o tempo.

A constatação de que muitos doentes são referenciados para cuidados paliativos sem

que lhes seja dada uma explicação da razão e do significado desse facto reforça a necessidade de que no primeiro encontro se explore essa questão. Verificou-se também que há doentes que não têm informação, mas que por várias razões, que não têm a ver com o seu desejo, não questionam os profissionais. Por isso, os profissionais devem ter uma atitude proactiva.

O facto de não se prestarem as informações que os doentes desejem de forma a poderem tomar decisões informadas é lesivo dos seus interesses e dos seus direitos. Na realidade, sem essa informação não há consentimento informado, condição indispensável para se cumprir o princípio da ética biomédica do respeito pela autonomia. Além da questão ética de não informar, há também violação da legislação, quer do código penal quer do código deontológico dos médicos.

Muito do que hoje é recomendado sobre o processo da comunicação e da informação baseia-se na experiência e no bom senso e não predominantemente na investigação, mas certamente que em primeiro lugar há que saber que informação o doente já tem [5].

O processo de comunicação eficaz requer que não haja alterações cognitivas significativas.

O processo de avaliação da consciência é o objecto do capítulo seguinte.

referências

1 Grunfeld E, Folkes A, Urquhart R. Do available questionnaires measure the communication factors that patients and families consider important at end of life? J Clin Oncol 2008;26:3874-3878.

2 Ferraz Gonçalves, Castro S. Diagnosis disclosure in a Portuguese oncological centre. Palliative Medicine 2001;15: 35–41.

3 Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM. Changes in physicians’ attitudes toward telling the cancer patient. J Am Med Assoc 1979; 241:

897–900.

4 Ferraz Gonçalves, Marques A, Rocha S, Leitão P, Mesquita T, Moutinho S. Breaking bad news: experiences and preferences of advanced cancer patients at a Portuguese oncology centre. Palliative Medicine 2005; 19: 526-/531.

5 Buckman R. How to break bad news: a guide to health-care professionals. Pan Books 1994.

6 Innes S, Payne S. Advanced cancer patients’ prognostic information preferences: a review. Palliat Med 2009;

23:29-39.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 6363

3

AVALIAÇÃO DA CONSCIÊNCIA

64 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 6565

avaliação da consciência

O termo consciência tem sido tomado ao longo do tempo em sentidos diversos. Tem sido objecto de reflexão por diversos filósofos [1] e de estudo científico. Tem sido considerada do ponto de vista moral, a chamada consciência moral.

Mais recentemente, têm sido as neurociências a dominar este campo. Já é muito antigo o conceito de que a consciência depende de uma função cerebral intacta. De facto, já Hipócrates o considerava [2].

A consciência foi definida por William James em 1890 como o estado de conhecimento de si próprio e do ambiente [3]. A consciência tem dois componentes: a vigília e o conteúdo. A vigília é o estar acordado. É aquilo a que normalmente se chama estar consciente. No entanto, esse aspecto apenas não nos diz nada sobre a capacidade cognitiva. Há estados em que os indivíduos estão acordados, mas têm um capacidade cognitiva reduzida ou nula, como acontece nos doentes com delirium, demências ou no estado vegetativo persistente. Nestas situações o estado de vigília pode estar normal ou quase normal mas o conteúdo está mais ou menos afectado. Para se poder avaliar o conteúdo da consciência é necessário, porém, um certo grau de vigília.

Foram desenvolvidos vários métodos de avaliação destas duas dimensões da consciência. Não havia, porém, nenhum instrumento desenvolvido especificamente para a população em cuidados paliativos para avaliar o estado de vigília. Os intrumentos usados foram desenvolvidos para outras situações referidas no artigo inserido neste capítulo, alguns

66 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

dos quais não foram validados. Por isso se validou o presente instrumento que é simples, intuitivo, de fácil apredizagem e que demora apenas alguns segundos a aplicar. Além disso, não carece de qualquer esforço da parte dos doentes. Estas características tornam este instrumento adequado para ser usado em cuidados paliativos e para ser integrado no sistema que nos propusemos desenvolver.

A avaliação da consciência é indispensável no contacto com os doentes, nomeadamente no primeiro encontro. Sem essa avaliação não é possível estar-se seguro da fiabiliadade da avaliação subsequente. Assim, se o estado de vigília não for obviamente normal é necessário determinar o seu nível pelo método validado apresentado a seguir. Se o nível de vigília for suficiente para se fazer a avaliação do conteúdo da consciência e se este não for obviamente anormal deve avaliar-se a função cognitiva.

Neste capítulo apresenta-se a seguir o método de avaliação do estado de vigília, apresentando um artigo já publicado Validation of a Consciousness Level Scale for Palliative Care em que descreve uma escala e o processo da sua validação desenvolvida por nós especificamente para cuidados paliativos. Segue-se a descrição do método escolhido para avaliação da função cognitiva e a justificação para a sua escolha.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 6767

validation of a consciousness level scale for palliative care

f. gonçalves, mj bento, m. alvarenga, i. costa and l. costa

Palliative Medicine (2008); 22:724

68 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 6969

Palliative Medicine 2008; 22: 724 729

Validation of a Consciousness Level Scale for Palliative Care

F Gonçalves Palliative Care Unit Network, Portuguese Institute of Oncology, Porto, MJ Bento Epidemiology Service, Portuguese Institute of Oncology, Porto, M Alvarenga , I Costa and L Costa Palliative Care Service, Portuguese Institute of Oncology, Porto

The main objective of this study is to validate a Consciousness Scale for palliative care. The scale was named Consciousness Scale for palliative care (CSPC). The valida- tion had two phases: 1) face validity the scale was assessed by seven healthcare professionals, both doctors and nurses, experienced in palliative care; 2) reliability and construct validity performed by four investigators, two nurses and two doctors. The construct validation was performed by comparing the CSPC with a Visual Ana- logue Scale (VAS) of 100 mm, anchored in the terms awake and unarousable , and then with the Glasgow Coma Scale (GCS). In this study, all four observers completed 44 periods of observation relative to 38 patients resulting in a total of 176 observations. In the phase of face validation, there were no discrepancies in relation to the issue: the scale provides measures for measurement; the scale can be useful to clinical practice; the scale can improve communication among professionals and the scale is easy to use. As a measure of internal consistency, Cronbachs α was found to be very high (0.99). The inter-rater reliability was also very high with an intraclass correlation coeffi- cient of 0.99 (P < 0.001). The correlation of the CSPC to the VAS was 0.94 ( P < 0.001) and the CSPC to the GCS was 0.82 (P < 0.001). The CSPC can be a very useful tool for assessing consciousness in palliative care patients. It is very ease to use, not time con- suming and can be used with minimal training. Communication between professionals can be improved in the clinical setting and in the research environment. Palliative Med- icine (2008); 22: 724729

Key words: consciousness; consciousness level scale; palliative care; sedation

Introduction

symptoms, existential distress, etc.) and not the level of sedation. Hence, the deepness of sedation should be, such as to acceptably control, the cause of suffering, which cannot be controlled by any other means.

No validated palliative care scale to measure the level of consciousness exists. The absence of such a scale is one of the reasons why data from studies, such as those deal- ing with sedation, are difficult to compare. Therefore, a reliable consciousness level scale could improve commu- nication between professionals, making the comparison of data of different studies easier, and it would be useful to clinical practice and research in general. The purpose of this study is to develop and validate such a scale for palli- ative care. The scale developed herein is called the Con- sciousness Scale for Palliative Care (CSPC).

Consciousness has two dimensions: wakefulness and awareness. 2 There are other scales that measure cognitive function, and therefore awareness, for example, the mini- mental state examination, 3 and others. The intention of that scale is to primarily measure wakefulness and not the content of consciousness.

A large percentage of palliative care patients undergo temporary or definitive changes in their consciousness level. This can be due to the involvement of the central nervous system brought on by cancer, metabolic altera- tions, infections, medication or a combination of these factors. When it is caused by medication, the level of con- sciousness can be intentionally affected or not. When intentional, with the aim of controlling suffering, the action is called palliative sedation. Sedation in palliative care is a very important task. It has been under discussion for more than a decade. Chater et al . 1 defined sedation as the intention to deliberately induce and maintain deep sleep, but not deliberately caus- ing death, in very specific circumstances …’ . However, the objective is to control suffering (physical or psychological

Correspondence to: Dr Ferraz Gonçalves, Instituto Português de Oncologia, UCP-R, Rua Dr. António Bernardino de Almeida, 4200-072 Porto, Portugal. Email: ferrazg@ipoporto.min-saude.pt or ferrazg@netcabo.pt

70 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Methods

This study was conducted at the Palliative Care Service of the Porto Section of the Portuguese Institute of Oncology. The study was approved by the ethics committee of the institution. As this study was non-interventional and there was no added risk to patients, a written informed consent was waived.

The design of the scale To identify other existing level of consciousness scales, a MEDLINE search was done for the period January 1970 to September 2003, using the following keywords: coma scale, coma assessment, sedation scale and sedation assess- ment. Reference lists of the resulting articles were reviewed. Although there are many scales used in different envir- onments, only a small number were assessed for reliability and validity, which was also observed by others. 4,5 Most of them were designed for use in intensive care units (ICU) or on neurological patients. None have been designed for or studied in a palliative care setting. None of the identified scales are suited to use in a palli- ative care setting for a large number of reasons, the most relevant being:

Most of the scales used in ICU include the assessment of items such as anxiety or agitation. 6 11 Other scales used in ICU have items related to compli- ance with mechanical ventilation. 6,11 13 Some scales were designed for neurological conditions; therefore, they contain items that are irrelevant to our purpose. 14 17 Some scales were designed to focus on particular con- ditions and therefore contain items that are only of relevance to such conditions. 18 22 Some were designed for children. 23,24 Many do not have the levels of the scale clearly defined, or these are not mutually exclusive. 25,26

Although the existing scales were considered inadequate for use in palliative care, they included the elements that should be used in a new scale. There are, therefore, ele- ments common to all these scales. In fact, following the study of those scales, the CSPC was constructed based on the responses to the stimuli ranked in a logical manner. The chosen responses are mutually exclusive. The stimuli, which are common to many scales, are simple and also performed in a logical progression: first observation then, if required, vocal stimulus and finally painful stimulus. This study included bedridden patients over 18 years of age, on a convenience basis. A patient may be included more than once if observations are carried out at least 48 h apart. The data collected included age, gender, diag-

Consciousness Level Scale for Palliative Care 725

nosis, metastases, sedative medication and if the patient was intentionally sedated or not. The study had two phases. In phase 1, face/content validity was carried out. Seven healthcare professionals experienced in palliative care, three doctors and four nurses, not involved in the design of the scale, applied the scale to about 20 patients each in order to familiarise themselves with it. They then answered the following questions using a five-point scale ranging from strongly agreeto strongly disagree :

Does the scale measure what it is intended to measure? Can the scale be useful to clinical practice? Can the scale improve communication among health- care professionals with regard to consciousness level? Is the scale easy to use?

The investigators were asked to give suggestions that might improve the scale, if they thought the scale could be improved. In phase 2, reliability and construct validation were performed. Because there is not any golden standard to evaluate consciousness level against which the CSPC can be compared, a criterion validation could not be per- formed. Therefore, we had to perform a construct valida- tion of the scale, comparing it with other tools we think can measure consciousness level, as is usually the case in these types of study. A visual analogue scale (VAS) and the Glasgow Coma Scale (GCS) were used, as was the case in similar studies undertaken in different settings, such as in an ICU environment. 4,6,7,13 The VAS was assessed by drawing a perpendicular mark on a 100 mm horizontal line based on the terms awake and unarousa- ble , and then the distance between the left end of the line and the mark was measured in millimetres. The data were collected by four investigators involved in the study: two doctors and two nurses. All four investi- gators underwent a training period with the VAS for eval- uating consciousness level, to familiarise with the scale. Each patient was simultaneously observed by three inves- tigators, one doctor and two nurses. One investigator interacted with the patient, as per the instructions set forth in the appendix, and rated the patient, whereas the other two observed and rated the patient independently:

two scored using the CSPC and one using the VAS. In all, 15 min later, the other doctor performed the GCS, record- ing the score of each item (motor and verbal responses, and eye opening). A rotation system was used so that each healthcare professional performed all the roles a sim- ilar number of times, except with regards to the GCS, which was always performed by the doctors and always by the doctor who did not participate in the first part of evaluation.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 7171

726 F Gonçalves et al.

Statistical analysis

Cronbach s α was performed to measure internal consistency. 27 The intraclass correlation coefficient was used to mea- sure the degree of concurrence between raters. 28 The association between the CSPC, VAS and GCS was evaluated using Spearmen s ρ. 29 The non-parametric Wilcoxon rank sum test was used to compare CSPC values with previously identified subgroups (gender, age, use of sedatives). 30

Results

In this study, all four observers made 44 periods of obser- vation relative to 38 patients, resulting in 176 observa- tions. None of the patients was subject to more than two periods of observation. The demographic data of those patients are detailed in Table 1. Forty-two patients (96%) were medicated with one or more drugs with sedative effects: 91% opioids, 57% neuro- leptics, 43% benzodiazepines and 30% others. Six patients were intentionally sedated: 1 was at level 4, 3 at level 5 and 2 at level 6 of the scale. There was, in those patients, 100% coincidence between the two raters of the scale.

Face validity The results for face validity were as follows:

The scale measures what it is intended to measure. Mean = 1.7 (range: 1 to 2). The scale can be useful to clinical practice. Mean = 1.6 (range: 1 to 3). The scale can improve communication among health- care professionals: Mean = 2.0 (range: 1 to 3). The scale is easy to use. Mean = 1.6 (1 to 2).

Table 1 Demographic data

 

No. (%)

Gender Male Female Primary Gynaecologic Colorectal Head and neck Gastric Astrocytoma Lung Melanoma Other

19 (50)

19 (50)

8 (21)

6 (16)

5 (13)

3 (8)

3 (8)

2 (5)

2 (5)

9 (24)

Age: median of 68 years (range: 3882).

Table 2 Distribution of consciousness scale for palliative care scores between raters

Scores

2nd rater

 

1

2

3

4

5

6

1st rater

1

9

2

0

0

0

0

2 2

9

0

0

0

0

3 0

0

5

1

0

0

4 0

0

0

3

0

0

5 0

0

0

0

6

0

6 0

0

0

0

0

7

Therefore, the range of responses went from strongly agree to the middle of the scale, without any disagreements.

Internal consistency As a measure of internal consistency, the Cronbach s α was very high (0.99).

Inter-rater reliability The scores recorded by the raters are displayed in Table 2. The same score on the scale was selected in 39 cases (89%). In the five cases where a different score was selected, the difference was always not more than one level of the scale. The degree of agreement between raters with regard to the scale was, therefore, very high, with an intraclass cor- relation coefficient of 0.99 ( P < 0.001). There were no significant within-subject differences in subgroups (age, gender) when analyzed by the Wilcoxon rank sum text. The median age of the patients (68 years) was used to divide this item into two groups. In women and those aged over 68 years, the scores coincided. The analysis of the group that used sedatives was not per- formed because 96% of the patients were using them.

Construct validity The correlation of the CSPC to the VAS and GCS was very high (Table 3). The correlation coefficient of the CSPC to the VAS was 0.94 (P < 0.001) for the first observer and 0.95 ( P < 0.001) for the second. The correla- tion coefficient of the scale to the GCS was 0.82 (P < 0.001) for the first observer and 0.85 ( P < 0.001) for the second. Note that the coefficient of the CSPC to

Table 3 Correlation between scales

Scales

ρ

P

CSPC1 CSPC2 CSPC1 VAS CSPC2 VAS CSPC1 GCS CSPC2 GCS

0.98

<0.001

0.96

<0.001

0.96

<0.001

0.88

<0.001

0.88

<0.001

CSPC1 and CSPC2 are the 1st and 2nd ratings of the scale. CSPC, Consciousness Scale for Palliative Care; VAS, Visual Analogue Scale; GCS, Glasgow Coma Scale.

72 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

the GCS was negative due to the scales scoring being inverted in relation to each other; in other words, the best score of the CSPC is the lowest, whereas the best score of the GCS is the highest.

Discussion

An ideal assessment tool should be inexpensive, easy to learn and easy to use by doctors and nurses at bedsides. This last aspect is particularly important in palliative care because it is practised in many settings and by healthcare professionals from heterogeneous backgrounds. Yet, the assessment tool should undergo rigorous testing to show validity and reliability. Probably, the most used scale is the Ramsay Scale. This scale was developed in an ICU to control the level of sedation with alphaxalone-alphadolone and published in the British Medical Journal in 1974. 25 The scale was really a secondary aspect of the article; however, since then, it has been widely used in many settings without undergoing any process of validation. This was carried out recently. 31 Although that scale has been extensively used,

it has been criticised for many reasons, 32 the criticisms mos-

t relevant to palliative care being: the six levels of the Ram-

say scale are not mutually exclusive; patients may be rest-

less or agitated (level 1), whereas at the same time being responsive only to light physical or loud auditory stimulus (level 4 and 5)and the sedation levels are not clearly defined or fully inclusive. The goal of this study was the development and valida- tion of a scale with the above-described characteristics, in an attempt to avoid the drawbacks of the Ramsay scale and other scales. The structure of the scale is very ease to use and the levels are clearly defined, with a phase of observation and, if required, consecutive phases of verbal interaction and of physical stimulation. The scale can be administered in a few seconds, using common and unambiguous stimuli in a logical sequence. The stimuli are also standardized, which does not happen with most scales. The inter-rater reliability of the scale was very good for all patients, with coincident scores in almost 90% of the cases, and in the few cases without coincidence, the difference was never greater than one level. In women and in patients aged over 68 years, there was complete agreement in the scores, as well as among the six patients who were intentionally sedated. As no gold standard exists for sedation, against which the CSPC could be compared to validate it, the validation of the CSPC was performed by correlating it to a VAS based on the terms awakeand unarousableand the GCS, which is a scale that was designed to assess the prognosis of coma after head injury 33 but which is widely used in many settings to assess the consciousness level. The correlation of the CSPC to the VAS and the GCS was very high.

Consciousness Level Scale for Palliative Care 727

There are potential limitations to the use of the CSPC. As it relies on the patientsauditory and visual acuity, it is not suitable for use on patients with major impairment of these senses.The intensity of the stimuli can vary with the observer; in other words, louder voices or more firm pinching of the trapezius might eventually result in different scores. Patients can have a not normalscore simply because they were nor- mally sleeping, but this is common to all scales. Nevertheless, the CSPC can be a very useful tool for assessing consciousness in palliative care patients. It is very ease to use, not time consuming and can be per- formed with minimal training. Communication between healthcare professionals can be improved in the clinical setting and in a research environment by the lack of ambi- guity of the levels and of the method of interaction with the patient. However, the scale should be evaluated in other locations in a palliative care setting to confirm the results achieved by this study.

References

1 Chater, S, Viola, R, Paterson, J, Jarvis, V. Sedation for intractable distress in the dying a survey of experts. Pal- liat Med 1998; 12 : 255 269.

2 Laureys, S. The neural correlate of (un)awareness: les- sons from the vegetative state. Trends Cogn Sci 2005; 19: 556 559.

3 Folstein, MF, Folstein, SE, McHugh, PR. Mini-mental state: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 188189.

4 Ely, EW, Truman, B, Shintani, A, Thomason, JW, Wheeler, AP, Gordon, S, et al. Monitoring sedation sta- tus over time in ICU patients: reliability and validity of the Richmond Agitation-Sedation Scale (RASS). JAMA 2003; 289: 29832991.

5 Jacobi, J, Fraser, G, Coursin, DB, Riker, RR, Fontaine, D, Wittbrodt, ET, et al. Clinical practice guidelines for the sus- tained use of sedatives and analgesics in the critically ill adults. Crit Care Med 2002; 30 : 119 141.

6 Sessler, CN, Gosnell, MS, Grap, MJ, Brophy, GM, ONeal, PV, Keane, KA, et al. The Richmond Agitation-Sedation Scale: validity and reliability in adult intensive care unit patients. Am J Respir Crit Care Med 2002; 166: 1338 1344.

7 Devlin, JW, Boleski, G, Mlynarek, M, Nerenz, DR, Peterson, E, Jankowski, M, et al . Motor Activity Assess- ment Scale: a valid and reliable sedation scale for use with mechanically ventilated patients in an adult surgical intensive care. Crit Care Med 1999; 27: 12711275.

8 Riker, RR, Picard, JT, Fraser, GL. Prospective evalua- tion of the Sedation-Agitation Scale for adult critically ill patients. Crit Care Med 1999; 27 : 13251329.

9 Detriche, O, Berré, J, Massaut, J, Vincent, JL. The Brus- sels Sedation Scale: use of a simple clinical sedation scale

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 7373

728 F Gonçalves et al.

can avoid excessive sedation in patients undergoing mechanical ventilation in the intensive care unit. Br J Anaesth 1999; 83 : 698 701.

10 Chaudhri, S, Kenny, GNC. Sedation after cardiac bypass surgery: comparison of propofol and midazolam in the presence of a computerized closed loop arterial pressure controller. Br J Anaesth 1992; 68 : 98 99.

11 Riker, RR, Fraser, GL, Cox, PM. Continuous infusion of haloperidol controls agitation in critically ill patients. Crit Care Med 1994; 22 : 433440.

12 Mallick, A, Smith, SN, Bodenham, AR. Local anaesthe- sia to the airway reduces sedation requirements in patients undergoing artificial ventilation. Br J Anaesth 1996; 77 : 731 734.

13 Riker, RR, Fraser, GL, Simmons, LE, Wilkins, ML. Validating the Sedation-Agitation Scale with the bispec- tral index and Visual Analog Scale in adult ICU after cardiac surgery. Intensive Care Med 2001; 27: 853858.

14 Wijdicks, EFM, Kokmen, E, OBrien, PC. Measurement of impaired consciousness in the neurological intensive care unit: a new test. J Neurol Neurosurg Psychiatry 1998; 64 : 117 119.

15 Stanczak, DE, White, JG, Gouview, WD, Moehle, KA, Daniel, M, Novack, T, et al. Assessment of level of con- sciousness following severe neurological insult: a compar- ison of the psychometric qualities of the Glasgow Coma Scale and the Comprehensive Level of Consciousness Scale. J Neurosurg 1984; 60 : 955960.

16 Sugiura, K, Muraoka, K, Chishiki, T, Baba, M. The Edinburg-2 Coma Scale : a CSPC for assessing impaired consciousness. Neurosurgery 1983; 12 : 411415.

17 Benzer, A, Mitterschiffthaler, G, Marosi, M, Luef, G, Pühringer, F, De La Renotiere, K, et al. Prediction of non-survival after trauma: Innsbruck Coma Scale. Lan- cet 1991; 338: 977978.

18 Miller, DR, Martineau, RJ, Hull, KA, Vallé, F, LeBel, M. Optimizing sedation following major vascular surgery: a double-blind study of midazolam administered by contin- uous infusion. Can J Anaesth 1994; 41: 782793.

19 Sanchez-Izquierdo-Riera, JA, Caballero-Cubedo, RE, Perez-Vela, JL, Ambros-Checa, A, Cantalapiedra- Santiago, JA, Alted-Lopez, E. Propofol versus midazo- lam: safety and efficacy for sedating the severe trauma patient. Anesth Analg 1998; 86 : 12191224.

20 Eddleston, JM, Pollard, BJ, Blades, JF, Doram, B. The use of propofol for sedation of critically ill patients

undergoing haemodiafiltration. Intensive Care Med 1995; 21: 342 347.

21 Checketts, MR, Gilhooly, CJ, Kenny, GNC. Patient- maintained analgesia with target-controlled alfentanil infusion after cardiac surgery: a comparison with mor- phine PCA. Br J Anaesth 1998; 80 : 748 751.

22 Irwin, MG, Thompson, N, Kenny, GNC. Patient- maintained propofol sedation. Anaesthesia 1997; 52 :

525530.

23 Malviya, S, Voepel-Lewis, T, Huntington, J, Siewert, M, Green, W. Effects of anesthetic technique on side effects associated with fentanyl oralet premedication. J Clin Anesth 1997; 9 : 374 378.

24 Ambuel, B, Hamlett, KW, Marx, CM, Blumer, JL. Assessing distress in pediatric intensive care environ- ments: the COMFORT scale. J Pediatric Psychol 1992; 17: 95 109.

25 Ramsay, MAE, Savege, TM, Simpson, BRJ, Goodwin, R. Controlled sedation with alphaxalone-alphadolone. BMJ 1974; 2: 656659.

26 De Jonghe, B, Cook, D, Appere-De-Vecchi, C, Guyatt, G, Meade, M, Outin, H. Using and understanding sedation scoring systems: a systematic review. Intensive Care Med 2002; 26: 275285.

27 Bland, JM, Altman, DG. Cronbach s alpha. BMJ 1997; 314: 572.

28 Análisis de la concordancia. In: Pallás, JMA, Villa, JJ, (Eds), Métodos de investigación: clínica e epidemiológica, segunda edición. Madrid: Ediciones Harcourt S.A., 2000; p. 321325.

29 Relation between two continuous variables. In: Altman, DG, (Ed), Practical statistics for medical research. 1st ed. London: Chapman and Hall, 1991; p. 277324.

30 Comparing groups continuous data. In: Altman, DG, (Ed), Practical statistics for medical research , 1st ed. Lon- don: Chapman and Hall, 1991; p. 179228.

31 Yate, PM, Thomas, D, Short, SM, Sebel, PS, Morton, J. Comparison of infusions of alfentanil or pethidine for sedation of ventilated patients of the ITU. Br J Anaesth 1986; 58 : 10911099.

32 Hansen-Flaschen, J, Cowen, J, Polomano, RC. Beyond the Ramsay Scale: need for a validated measure of sedat- ing drug efficacy in the intensive care unit. Crit Care Med 1994; 22 : 732733.

33 Teasdale, G, Jennett, B. Assessment of coma and impaired consciousness. Lancet 1974; 13: 8184.

74 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Appendix

Consciousness Level Scale for Palliative Care 729

Nível

Portuguese version

1

Acordado/a

2

Acorda quando chamado/a pelo seu nome e permanece acordado durante a conversação

3

Acorda quando chamado/a pelo seu nome mas adormece durante a conversação

4

Reage com movimentos ou abrindo brevemente os olhos, mas sem contacto visual, quando chamado/a pelo seu nome

5

Reage a beliscão no trapézio

6

Não reage

Level

English translation

1

Awake

2

Awakens when called by his/her name and stays awake during conversation

3

Awakens when called by his/her name but falls asleep during conversation

4

Reacts with movement or brief eye opening, but without eye contact, when called by his/her name

5

Reacts to trapezius muscle pinching

6

Does not react

Procedures for assessment:

Stimulation

Score

Patient is awakened, calm or agitated, without the need for any external stimulus Patient is not spontaneously alert. Patient is called loudly by name Patient is not spontaneously alert and does not react to voice. A firm pinching of the trapezius muscle is applied

Level 1

Levels 2, 3 and 4, according to the reaction observed Level 5 and 6, according to the reaction observed

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 7575

avaliação da função cognitiva

A insuficiência cognitiva é muito frequente nos doentes com doenças avançadas. Há

vários distúrbios associados à insuficiência cognitiva, sendo o delirium o mais frequente na fase final da vida. Para se poder avaliar o estado cognitivo, o conteúdo da consciência,

é necessário que haja uma certa capacidade de estar vígil. O delirium ocorre em 28%

a 83% dos doentes quando próximos do fim da vida [4]. O delirium pode ser óbvio, sobretudo a sua variante hiperactiva em que há agitação psicomotora, mas numa

percentagem que pode atingir os 50% pode não ser detectado. Isto deve- se a diversos motivos dos quais se destacam: a flutuação do comportamento dos doentes ao longo do dia, com este a aproximar-se do normal, em geral mais frequentemente de manhã, agravando-se à medida que o dia avança, tornando-se pior ao fim da tarde e à noite;

e a variante hipoactiva em que a agitação geralmente associada ao delirium não está presente ou ocorre episodicamente.

O problema de não se detectar uma percentagem significativa dos casos de delirium

não se limita aos cuidados paliativos, verificando-se frequentemente nos doentes internados em geral, sobretudo nos idosos, no pós-operatório e nos cuidados intensivos. Por isso, foram desenvolvidos inúmeros instrumentos com o fim de melhorar o rastreio e/ou o diagnóstico do delirium [5].

O interesse de se fazer o rastreio do delirium reside no facto de ser reversível em muitos casos e em poder ser indicativo, por vezes o único sinal em doentes debilitados, de uma ocorrência que complique o estado dos doentes, como uma infecção ou hipercalcemia, por exemplo.

76 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

O método de rastreio mais conhecido e usado é sem dúvida o Mini Exame do Estado

Mental (Mini-Mental-Status Examination) [6]. Este instrumento tem uma validade excelente para detectar alterações cognitivas e para avaliar a sua gravidade, podendo assim servir para avaliar a sua evolução, mas não permite o diagnóstico de delirium. O problema principal quanto a nós é o de exigir uma participação importante dos doentes, nomeadamente a realização de um desenho. Num estudo recente, Fayers et al. concluíram que é possível reduzir o número de perguntas mantendo uma boa acurácia para o rastreio de alterações cognitivas [7].

Outro instrumento muito usado pela sua simplicidade, sobretudo na sua versão curta também designada algoritmo, é o Método de Avaliação da Confusão (MAC) [8]. É composto apenas por quatro itens e não exige qualquer esforço do doente, já que

é pela observação do comportamento e das respostas do doente durante a consulta

que o profissional de saúde diagnosticará ou não delirium. Este método permite o diagnóstico de delirium ao contrário do Mini-Exame do Estado Mental (MEEM), mas por outro lado não é quantitativo, pelo que não permite medir a gravidade nem a

evolução da situação. Este método foi recentemente validado em cuidados paliativos [9]. No entanto, o MAC foi desenhado para ser aplicado baseado em observações realizadas durante uma avaliação cognitiva formal com instrumentos como o MEEM [8,10].

O MAC quando aplicado por enfermeiros sem uma avaliação cognitiva formal revelou uma

sensibilidade baixa, embora mantendo uma especificidade alta [11].

O MAC foi recentemente validado em português, embora no Brasil [12]. A versão

validada foi a versão completa e não o algoritmo, mas este é apenas uma forma resumida da versão completa. Por outro lado, tem sido usado por nós desde há cerca de 15 anos.

Por todas estas razões, ser um método simples, validado em português e praticado por nós desde há muito tempo será o método adoptado neste sistema (quadro 2), reconhecendo que não está isento de problemas.

A avaliação destes 2 aspectos da consciência apresentados neste capítulo é que

permitirão decidir a forma de avaliação a efectuar, cujas variantes se apresentam nos 2 capítulos seguintes.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 7777

Quadro 2 | Método de avaliação da confusão.

1 · Início agudo e curso flutuante

· Há evidência de uma alteração aguda do estado mental do doente;

· O comportamento anormal flutua ao longo do dia;

(estas informações obtem-se geralmente de um membro da família ou de outra pessoa).

2 · Inatenção

· O doente tem dificuldade em manter a atenção.

3 · Pensamento desorganizado

· O doente tem pensamento desorganizado ou incoerente, tal como conversação irrelevante ou desconexa, fluxo de ideias pouco claro ou ilógico ou muda imprevisivelmente de assunto para assunto.

4 · Alteração do nível de consciência

· Globalmente o nível de consciência poderia classificar-se como: alerta (normal), vigilante (hiperalerta), letárgico (sonolento, acorda facilmente), estupor (acorda dificilmente), coma (não acorda).

O diagnóstico de delirium requer a presença de 1 e 2 e de 3 ou 4.

referências

1 Van Gulick R. Consciousness. Em Stanford Encyclope- dia of philosophy. http://plato.stanford.edu/entries/ consciousness/ (acedido em 30/06/2011).

2 Plum F, Posner JB. The pathologic physiology of signs and symptoms of coma. Em The diagnosis of stupor and coma 3ª ed. Philadelphia, F. A. Davis Company. 1982.

3 The Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state. N Engl J Med 1994;

330:1499.1508.

4 Casarett DJ, Inouye SK. Diagnosis and management of delirium near the end of life. Ann Intern Med 2001;

135:32-40.

5 Smith MJ, Breitbart WS, Platt MM. A critique of

instruments and methods to detect, diagnose, and

1995;

rate

delirium.

J

Pain

Symptom

Manage

10:35-77.

6 Folstein MF, Folstein SE, McHugh PR. Mini-mental state: a practical method of grading the cognitive state of patients for the clinician. J Psychiatric Res 1975;12:189-198.

7 Fayers PM, Hjermstad MJ, Ranhoff AH, Kaasa S, Skogstad L, Klepstad P, Loge JH. Which mini-mental state exam items can be used to screen for delirium and cognitive impairment? J Pain Symptom Manage. 2005;30:41-50.

8 Inouye SK, van Dyck CH, Alessi CA, Balkin S, Siegal AP, Horwitz RI. Clarifying confusion: The Confusion Assessment Method. Ann Intern Med 1990;113:941-948.

9 Ryan K, Leonard M, Guerin S, Donnelly S, Conroy M, Meagher D. Validation of the confusion assessment method in the palliative care setting. Palliat Med 2009;23:40-45.

10 Wong CL, Holroyd-Ledue J, Simel DL, Straus SE. Does this patient have delirium? Value of bedside instruments. JAMA 2010;304:779-786.

11 Inouye SK, Foreman MD, Mion LC, Katz KH, Cooney LM. Nurses’recognitionof deliriumanditssymptoms:comparison of nurse and researcher ratings. Arch Intern Med 2001;

161:2467-2473.

12 Fabbri RMA, Moreira MA, Garrido R, Almeida OP. Validity and reliability of the Portuguese version of the Confusion Assessment Method (CAM) for the detection of delirium in the elderly. Arq Neuropsiquiatr 2001;59:175-179.

78 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 7979

4

AVALIAÇÃO DOS DOENTES SEM ALTERAÇÕES COGNITIVAS

80 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 8181

avaliação dos doentes sem alterações cognitivas

Os doentes em cuidados paliativos têm uma grande variedade de sintomas/problemas. Verificou-se que há uma diferença significativa entre o número de sintomas referido espontaneamente e o número detectado quando os doentes são sistematicamente interrogados, sendo maior este último [1]. A diferença não foi igual para todos os tipos de sintomas. Assim, sintomas como dor, alterações intestinais, náuseas e vómitos e problemas de mobilidade foram mais frequentemente referidos espontaneamente, enquanto sintomas como fadiga, perda de apetite, perda de peso e edemas foram mais frequentemente detectados quando interrogados. Pode haver várias razões para isso, sendo uma forte hipótese o facto de os doentes atribuírem mais importância a uns sintomas do que a outros, quer porque uns têm uma maior influência no seu bem-estar do que outros quer porque não atribuem importância a outros por os considerarem inevitáveis na sua situação ou porque os atribuem a outros factores, como a idade, por exemplo. Desta observação se pode concluir que, por um lado, é importante fazer uma avaliação sistemática de sintomas e outros problemas e, por outro lado, não é necessário fazer uma avaliação abrangente na fase inicial porque os doentes não atribuem a mesma importância a todos os sintomas/problemas. Acresce a circunstância de na avaliação inicial poder não haver possibilidade ou conveniência de se fazer essa avaliação abrangente pelas razões já aduzidas na introdução.

Na literatura de cuidados paliativos encontram-se, como já foi referido, muitos instrumentos de avaliação que, embora naturalmente incluam problemas comuns, como a dor, incluem uma variedade grande de sintomas/problemas e são assim muito diferentes em termos de conteúdo e extensão. Para exemplificar essa variedade mostram-se no anexo 1 os sintomas/problemas físicos incluídos em 10 instrumentos. Em face desta diversidade considerou-se que havia espaço para evoluir.

82 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

Para cumprir a finalidade deste sistema, expressa na introdução, há que reduzir o número de sintomas/problemas a avaliar ao essencial para a primeira avaliação, independentemente de avaliações subsequentes. O método escolhido para a selecção dos sintomas/problemas foi o método de Delfos.

Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos | 8383

o método de delfos

O método de Delfos foi desenvolvido nos anos 50 do século XX pela Companhia Rand

de Santa Monica, California, com fins militares [2]. O nome deriva do Oráculo de

Delfos da Grécia antiga onde as sacerdotisas de Apolo, as Pitonisas, faziam profecias.

As profecias do oráculo são “predições não refutáveis, porque não têm a propriedade de

serem verdadeiras ou falsas”[2].

O método de Delfos é uma forma de estudo de assuntos controversos. É uma forma

de obter consensos através da opinião de peritos que individual e anonimamente

respondem às questões colocadas em duas ou mais voltas [3]. Ao fim de cada volta

os peritos envolvidos recebem um sumário das respostas de todos os outros e têm a

oportunidade de reconsiderar as suas respostas e eventualmente de as modificar na volta seguinte. As vantagens do método de Delfos na obtenção de consensos residem:

· No facto de os peritos poderem exprimir as suas opiniões sem contrangimentos, isto é, anonimamente e sem discussão directa com outros peritos, não conduzindo a um eventual predomínio das opiniões de quem tem uma personalidade dominante ou de quem se expresse com mais facilidade;

· Em poder-se fazer por correio electrónico, não havendo, portanto, limitações geográficas;

· Por ser mais barato já que não é necessário fazer reuniões num determinado local, com os custos inerentes, por se fazer por correio electrónico.

84 || Desenvolvimento de um Sistema Integrado para Avaliação Inicial dos Doentes Oncológicos admitidos em Cuidados Paliativos

O método de Delfos é uma técnica de investigação flexível que tem sido aplicado de

formas variadas de acordo com os objectivos do projecto de investigação [4]. Por todas estas razões, o uso do método de Delfos tem vindo a expandir-se na medicina em geral

e em particular em cuidados paliativos [5,6].

A primeira fase

O primeiro passo foi uma revisão extensa da literatura de cuidados paliativos relevante

para a f