Legal, ethical, and spiritual foundations of ACP

Katherine Irene Pettus PhD

I. The ethical framework of ACP

It is well accepted that practices of advance care planning (ACP) and shared

decision making1 are based on at least three inter-related ethical principles,

the first of which is respect for patient autonomy the individuals right to
decide what will be done to her own body. This entails the right to access information about her condition, as well as all available treatments, and her informed consent for any treatment.

Second, the principle of beneficence, which is based on acknowledgement of

our human vulnerability and embededness in community. Communities include family, healthcare providers, village, city, nation, region, and the world
as a whole. And third, justice, which for these purposes can be defined as
equitable distribution of resources, non-discrimination, and universal access
to basic healthcare.

Biomedical ethical principles, including autonomy, which entails respectful

conversations between providers and patients, have spiritual, physical, emotional, social (economic) dimensions, and primarily implicate relationship.
Thus the principle of beneficence entails commitment to an ethic of conversation, unto and beyond death, between provider, patient, and family/caregivers. Clinically defined, this conversation is the ongoing discussion
of goals of care. However, goals of care are not set in stone, and often have
1

The United Nations have described supported decision making as follows: The individual is the decision maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and
preferences of the individual. Even when an individual with a disability requires total support, the support
person(s) should enable the individual to exercise his/her legal capacity to the greatest extent possible,
according to the wishes of the individual... Paragraph 4 of article 12 calls for safeguards to be put in place
to protect against abuse of these support mechanisms.

to be re-negotiated with the progression of the disease or with new complications. Discussing goals of care thus paradoxically is a commitment to process, not ends. This conversation calls on the virtues of courage, honesty,
friendship, and wisdom. Classical philosophers considered development of
these virtues essential to good citizenship

II. Human rights and healthy communities

ACP implicates at least three universal human rights: to life, to the highest attainable standard of health, and to be free from torture.2 Although there is no
human right to honest communicationprogressive realisation of the rights
of seriously ill people of all ages, and terminally ill older people, to health
and freedom from torture, seems to depend on a commitment to open communication by healthcare providers.

Yet in the human rights framework, states are responsible for ensuring that
their citizens human rights are fulfilled. Whether certain vulnerable populations can realise the right to health entails a state obligation to ensure that
ACP and EOL conversations are both offered, as appropriate, and take place
in a sensitive and effective manner.

The Universal Declaration of Human Rights, 1948, (UDHR) is a product of

commitment to the ethic of transnational crucial conversation: The UDHR was
drafted by representatives of particularly diverse, even opposed, ideologies.
Today, the Declaration of 1948 can be considered as the single most important reference point for cross-national discussion of how to order our future together.3 Its touchstone, a wide- spread assumption that the inherent
dignity ... of all members of the human family is the ground of human rights
2
3

UDHR and CESCR

Andorno, Roberto. Biomedicine and international human rights law: in search of a global consensus. Bull
World Health Organ [online]. 2002, vol.80, n.12, pp. 959-963.

and democracy,4 is one of the few common values in our world of philosophical pluralism. This notion of human dignity is usually associated with supreme
importance, fundamental value, and inviolability of the human person. Dignity
means that people must always be treated as an end in themselves and never only as a means.5

The ACP commitment to both autonomy and communication is apparently

paradoxical: it shows that treating a patient as an end in herself, while acknowledging her embededness in community, are not mutually exclusive. The
paradox is nested in a normative framework whose premise is that individuals
achieve our best ends through narrative and communicative approaches.

The bioethical principles and human rights implicate at least three practical
questions about the obligations associated with rights: Should professionals
have official support and training to initiate ACP conversations?; Is there an
optimum time to hold these discussions? At a particular age? Or health event
(for example, hospital admission or new diagnosis)?; and finally, what are the
potential cost and resource implications of more end-of-life discussions?
Framing the ACP conversation as a right also implies that individuals have
the right to refuse the conversation, feeling that they lack sufficient information to make a good decision. But does such a refusal implicate the rights
of others with whom they are embedded in community, and the ethical principle of justice? The majoritys right to demand that resources be directed to
better primary healthcare in times of scarcity, for instance? If healthcare
budgets are a zero-sum game, and patients are consistently over-treated,
because crucial conversations have been avoided, the state spends scarce
United Nations. Universal declaration of human rights. Preamble. Available from: URL:
http://www.un.org/Overview/rights.html
4

Kant I. Grundlegung zur Metaphysik der Sitten. [Foundations of the Metaphysics of Morals.] Berlin:
Akademie-Ausgabe, 1911. In German.

resources at a cost to others. Communities need to discuss ways to answer

these questions and confront these issues if individual autonomy of vulnerable groups (such as the frail elderly and terminally ill patients) is to be preserved. This is ACP at a more macro-level.

As such, embedding the principle of autonomy in a wider context of conversation also implicates justice and vindicates the right to healthy communities:
Allan Kellehear calls for a participatory, community development approach to
death education that includes the employment of community development
workers by health care and government institutions and (even more important) the deployment of unpaid community activistssuch as those who
championed civil rights and other justice movementswho apply their organizing skills to build what he calls compassionate cities. Intentional commitment to compassionate communities through development of ACP processes
outside the healthcare system raises the spiritual IQ of participants and builds
skills to take on other contemporary social, economic, and environmental
challenges.

III. International Legal and Human Rights Framework of ACP in Slovenia

Slovenias 2004 report to the Committee on Economic Social Cultural Rights stated
that Greater attention will be given to this group of people (the terminally
ill) and their closest family members. We will elaborate programmes of help
for the families of persons dying.6

Article 12 of the International Covenant on Economic, Social and Cultural Rights declares that, The States Parties to the present Covenant rec6

http://tbinternet.ohchr.org/_layouts/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=9&DocTypeID
=29. para. 745

ognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.
General Comment 14 of the Committee of Economic, Social and Cultural
Rights7 clarifies that the essential elements contained within the obligation to
the highest attainable standard of physical and mental health include;

(2) Accessibility of services and facilities, including:

(IV) Information accessibility including the right to seek, receive and
impart information and ideas concerning health issues.
(3) Acceptability of services to be respectful of medical ethics
and of culture.

Like all human rights, the right to the highest attainable standard of health
imposes three levels of obligations on State Parties: to respect, protect and
fulfil. The obligation to fulfil contains obligations to facilitate, provide and
promote, and requires States to adopt appropriate measures to ensure the
full realisation of the right to health.8

The Charter of the Fundamental Rights of the European Union provides

no guidance on ACP, since it only gives patients the right to preventive
healthcare and medical treatment. However, the principle of free and informed consent, given prior to any intervention on the person concerned, is
closely linked to the right to respect for private life enshrined in Article 8 of
the European Convention on Human Rights.
7

The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health
care and General Comment 14 (paragraph 34) CESCR stipulates that States are under the obligation to
respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons,
... to preventive, curative and palliative health services. However, these rights are seen as aspirational
to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of
its response to palliative care and pain management, General Comment 14 set out core obligations in
the provision of health care and placed the burden on governments to justify that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as a matter of priority, [these] obligations.
8

CESCR General Comment 14, paragraph 33

The Council of Europe provides explicit text though, quoted below, that referencing the quality of life of the dying, and clarifies the right to information
and statements of intention. Recommendation 1418 (1999), Protection of the
human rights and dignity of the terminally ill and the dying, states that:
1. The vocation of the Council of Europe is to protect the dignity of all
human beings and the rights which stem therefrom []
7. Fundamental rights deriving from the dignity of the terminally ill or
dying person are threatened today by a variety of factors: (lists)
9. The Assembly therefore recommends that the Committee of Ministers encourage the member states of the Council of Europe to respect
and protect the dignity of terminally ill or dying persons in all respects:
xi. b. by protecting the terminally ill or dying persons right to
self-determination, while taking the necessary measures:
iv. to ensure that a currently incapacitated terminally ill or dying persons advance directive or living will refusing specific
medical treatments is observed.9

With regard to the bioethical principle of justice: Recommendation

Rec(2003)24 of the Committee of Ministers of the Council of Europe on the
organisation of palliative care, calls on governments to guarantee equitable
access to such care for anyone whose state of health requires it.
The explanatory memorandum of the recommendation also points out that
doctors are not obliged to continue treatments that are patently futile and excessively burdensome to the patient, and that the patient may refuse such
treatment.

Text adopted by the Council of Europe Parliamentary Assembly on 25 June 1999 (24th Sitting) Recommendation 1418 (1999)1
Protection of the human rights and dignity of the terminally ill and the dying
(Extract from the Official Gazette of the Council of Europe June 1999)

Furthermore, the Convention for the Protection of Human Rights and

Dignity of the Human Being with regard to the Application of Biology
and Medicine,Convention on Human Rights and Biomedicine (ETS No.
164), adopted in 1996 and opened for signature in Oviedo (Spain) in 1997
(Oviedo Convention), forms an ethical and legal frame of reference through
which member states endeavour to find common, coordinated responses to
the questions that arise in society, with the aim of ensuring the protection of
human dignity.

Article 9 provides for the possibility of people expressing in advance their

wishes concerning the end of their lives, in the event that they are no longer
able to do so when the decision has to be taken, and the duty of doctors to
take account of these wishes when assessing the situation.10

The issue is of particular salience to the frail elderly, who have no overriding
diagnosis. They are estimated to account for around 40% of deaths
and are often associated with multiple comorbidities and a degree of cognitive impairment. Prognostication in this group is very difficult. A recent study
found that the majority would appreciate the chance to discuss end-of-life
care, yet most do not have this opportunity. It could be argued that institutional failure to offer ACP discussions in a sensitive way amounts not just to
infringement of our elders rights to information, informed consent to treatment, and even to free speech, but to elder abuse.

IV. Negative perceptions of ACP: barriers

Most US federal states have implemented laws that enforce adherence to
advance directives, but now, after years of experience, some bioethicists be10

Article 9 Previously expressed wishes

The previously expressed wishes relating to a medical intervention by a patient who is not, at the time of
the intervention, in a state to express his or her wishes shall be taken into account.

lieve that living wills have failed entirely since less than 20% of Americans
have them, and only a fractional percentage are actually followed.11 Nevertheless, the British and German parliaments have passed legislation to strengthen the binding nature of such documents.12 Results of studies now pinpoint
limitations of advance directives and new directions for practice.

Many of those surveyed in studies feared that advance directives could be

misused. More than half of the interviewees in all groups believed that patients could be pressurised into writing such a document, a form of elder
abuse. One quarter of the patients and one third of the other groups, including the physicians, feared a dictatory use of directives, even if they are no
longer appropriate to the medical situation. The majority in the healthy groups
(healthy controls, nursing staff, and physicians) believed, often groundlessly,
that relatives could abuse advance directives to the disadvantage of patients.

The extent of mistrust in advance directives expressed by these results has

not so far been sufficiently emphasised in the bioethical literature. The study
authors see this as a barrier, hitherto too little recognised, to the spread of
advance directive use.13
Notwithstanding their limitations, however, study authors see advanced directives as invaluable tools that should be encouraged, not as ends, but as a
means to further communication between patient, physician and family. Creating a living will and/or choosing a surrogate through a durable power of at-

11

Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep 2004;34(2):3042.

12

Dyer C. Bill clarifies gap in law over living wills. BMJ 2004;328:1516. Task force of the German Federal
Ministry of Justice on patients autonomy at the end of life. Final Report. 10 June, 2004.
http://www.bmj.bund.de
13

Sahm, S., R. Will, and G. Hommel. "Attitudes towards and barriers to writing advance directives
amongst cancer patients, healthy controls, and medical staff." Journal of medical ethics 31.8 (2005): 437440; Perkins, Henry S. "Controlling death: the false promise of advance directives." Annals of Internal
Medicine 147.1 (2007): 51-57.

torney should not be an isolated event broached during a time of acute crisis
but should be part of an ongoing discussion intrinsic to the doctorpatient
family relationship.14
The stakes of establishing an effective Advance Care Planning Program are
high, and clearly depend on the cultural context and the norms of the population in question. Fortunately, the both Slovenia and international community
can learn from experiments that have been carried out to date in various
communities and to place challenges on the table as topics of conversation
for participants and policy makers alike. While this may not appear as a
quick fix or direct solution for the linked problems of low rates of completion
of Advance Directives and over treatment of vulnerable patients in the system
as a whole, it does begin the conversation.

Both within and beyond Slovenia, at the level of the international community,
the high stakes of not implementing programs that undertake to begin the
conversation about Advance Care Planning as an ethical imperative are:
1) health care institutions will continue to inflict unintentional and preventable suffering on patients and families;

states default policy will be to tolerate breaches of the right to the

highest attainable standard of health regarding access to pain medicine and appropriate care at the end of life;

2) some politicians will present euthanasia as a rational option for states

in economic crisis, convincing voters that the state cannot afford palliative
care or access internationally controlled pain medicines because of the
high barriers under the international drug control treaties.
States can avert these outcomes by implementing WHA Resolution A67/31,
which recommends integrating palliative care into the public health system.15
14

Whetstine, Leslie M. "Advanced directives and treatment decisions in the intensive care unit." Critical
Care 11.4 (2007): 150.

IV. ACPs potential to build healthy communities. Although ACP cannot directly prevent these outcomes, ACP programmes can initiate a democratic,
participatory, conversation about the goals of patient care at the micro (patient and family) level. Such dialogue might ultimately bear fruit at the macro
(community and state policy) level. There is a unique chance that Slovenia
can be a leader in such a societal development, piloting model ACP programs for other EU countries and for the broader international community.

These conversations about mainstreaming ACP programs can take place in

the healthcare sector, at the level of civil society, as well as at the highest
levels of government. They can be held with organisations that defend the
rights of older people, as well as with Slovenian representatives at the UN
treaty bodies such as the Commission on Narcotic Drugs and the Human
Rights Council.

The new Independent Expert on the Rights of Older People, Dr. Rosa Kornfield Matte, needs to hear from Member States that ACP programmes are a
public health priority. She can then choose to include this issue in her thematic and country reports to the UN Human Rights Council in Geneva.
Conclusion: Slovenia can draw on a solid international and European human

rights framework to begin the conversation about developing ACP polices

and practices. The strong claim of this paper is that building ACP practices
into national healthcare policy will, over time, increase democratic solidarity
and respect within civil society. Training healthcare professionals and community volunteers to initiate and conduct discussions with vulnerable elderly
and terminally ill patients about their needs and priorities for their final days,
15

http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_31-en.pdf accessed 12/8/2014

weeks, or months of life, will contribute to the overall emotional intelligence of

society, thereby increasing citizens contribution to the building of compassionate communities.