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Cancer
Carol Taylor, PhD, MSN, RN
Georgetown University School of Nursing and Health
Studies
Kennedy Institute of Ethics
taylorcr@georgetown.edu
Objectives
Compare and contrast four paradigms for death and dying
Relate how personal, professional, and societal beliefs
concerning human life, dying and death influence the
outcomes of health care decision making for the
seriously ill and dying
Describe the recurrent and evolving ethical issues related
to decision making for the seriously ill and dying
Affirm or challenge the claim that patients have a right to
assisted suicide/aid in dying.
What is it reasonable to expect of health care professionals
and governments when patients or their surrogates seek
to end life on their own terms.
Commercialization of EOL
care
In the early days of hospice in the U.S. most
care was provided by not-for-profit communitybased agencies. Within a relatively short time
frame, about 30 years, entrepreneurs seized
on the vulnerabilities and dependencies of the
dying and their families and created a huge
for-profit enterprise to allegedly care for they
dying. Recent research has demonstrated the
disparities in for- and not-for-profit hospice.
The majority of the hospices in the United
States are now for profit.
Key Findings
Patients
Families
Health Care Professionals
Facilities: Hospitals, Nursing Homes,
Hospices
Governments
Insurers
Letting Go
(2009)
DIRECTED BY JAVIER RECIO GRACIA
Reflection Questions
1. What does it mean to be finite--to be creature? Are there
ways in which our efforts to control and master nature work
against our innate dignity as humans?
2. What does good care at the end-of-lifelook like?
Hospice/Palliative Care
Death on Demand
Supportive/Palliative
Care
Presentation
6m Death
Suffering-Relieving Therapy
Bereavement
Care
SUPPORT STUDY-1995
Half of conscious patients had moderate to
severe pain at least of time before death
31% of patients did not wish to have CPR BUT
physicians of more than half were NOT aware of
DNR order preference
Nearly half of DNR orders were written within 2
days of patient death
40% of the patients spent at least 10 days in ICU
SUPPORT STUDY
Poor symptom (e.g., pain)
management
Inconsistent with patient preferences
& values
Problematic communication &
decision making
Life-prolonging, intensive treatments
vs. palliative/hospice care
TENO STUDY-2004
One in four people who died did not receive
enough pain medication and sometimes received
none at all. Inadequate pain management was
1.6 times more likely to be a concern in a nursing
home than with home hospice care.
One in two patients did not receive enough
emotional support. This was 1.3 times more likely
to be the case in an institution.
One in four respondents expressed concern over
physician communication and treatment options.
Finally, national
standards/guidelines
National Consensus Project for Quality
Palliative Care: Clinical practice guidelines
for quality palliative care, 3rd ed. (2013).
http://www.nationalconsensusproject.org/guidelines_download2
.
aspx
An argument that
society and families
and youwill be better
off if nature takes its
course swiftly and
promptly
By Ezekial Emanuel, The
Atlantic, October 2014
Emerging Voices
NPR host Diane Rehm emerges as
key force in right-to-die debate
Diane Rehm
http://www.washingtonpost.com/local/np
r-host-diane-rehm-emerges-as-a-key-for
ce-in-the-right-to-die-debate/2015/02/
14/12b72230-ad50-11e4-9c91-e9d2f9fde64
4_story.html
http://thedianerehmshow.org/shows/2015
-02-17/the_latest_in_the_debate_over_a
id_in_dying
Oliver Sacks
http://www.nytimes.com/2015/02/19/opini
on/oliver-sacks-on-learning-he-has-term
inalcancer.html
Gratitude
If you were Mr. Yourshaws daughter and a nurse, would you have handed
him a full bottle of liquid morphine knowing that he wished to end his life?
Do events like Mr. Yourshaws death appropriately invite us to rethink the
wisdom of the hospice philosophy to do nothing to either hasten or
postpone dying.
Do you agree with Ira Byocks critique of the hospice caring for Mr.
Yourshaw. He reviewed Mr. Yourshaws medical records and reported that
they were just doing the regulatory minimum and failed to address his
suffering. He sees Mr. Yourshaws death as emblematic of how we are
failing our frail elders, the chronically ill, the vulnerable. He does not
believe legalizing assisted suicide is the answer. So what we are saying
to Mr. Yourshaw is, We are not going to treat your pain, we are not going
to train your doctors to counsel you, we are going to basically ignore you.
But dont worry, at that time when you are feeling hopeless, we can write
that lethal prescription. In what world is that a progressive, positive
development?
Was it appropriate for the hospice nurse to call the police when Mr.
Yourshaws daughter, Barbara Mancini, shared that she had handed her
father the full bottle of morphine which he proceeded to drink? The
hospice stated that they needed to follow the law. Barbara was
immediately arrested and faced a possible 10 year prison sentence.
Can better life care and death with dignity co-exist? Should they?
Spiritual Care
Care that enables individuals to meet basic spiritual needs: (1) need for
meaning and purpose, (2) need for love and relatedness, and (3) need for
forgiveness
Spiritual care models offer a framework for health care professionals to
connect with their patients; listen to their fears, dreams and pain;
collaborate with their patients as partners in their care; and provide,
through the therapeutic relationship, an opportunity for healing. Healing
is distinguished from cure in this context. It refers to the ability of a
person to find solace, comfort, connection, meaning, and purpose in the
midst of suffering, disarray, and pain. The care is rooted in spirituality
using compassion, hopefulness, and the recognition that, although a
persons life may be limited or no longer socially productive, it remains
full of possibility. [Puchalski,, C. , Ferrell, B., et. al. (2009). Improving the
quality of spiritual care as a dimension of palliative care: The report of
the consensus conference. Journal of Palliative Medicine, 12(10), 890.]
The second set of questions related to meaning. At some level, the dying person
must ask such questions as the following:
Does my dying now, as an embodied person, have any meaning here and now?
Has my life, as I have lived it until now, had any meaning?
Has there been any meaning in what I have suffered? Will there be any meaning in my
living and dying that perdures beyond the moment of my death. Questions of value have
been subsumed under the word dignity; questions of meaning have been subsumed under
the word hope. (Sulmasy, The Health Professional as Friend and Healer, 2000).
Healing Presence
Healing presence is the condition of being consciously and
compassionately in the present moment with another or with
others, believing in and affirming their potential for wholeness,
wherever they are in life.
Your healing presence can take many forms. You cannot do healing
presenceyou become healing presence, expressing it gently yet firmly
in various ways: Listening, holding, talking, being silent, being still,
being in your body, coming home to yourself, being receptive. You
can deepen your healing presence by slowing down, by doing only one
thing at a time, by reminding yourself regularly to come back to the
present moment. You can encourage healing presence by being
appreciative, forgiving, humble kind. (Miller, E.J. & Cutshall, S.C. 2001.
The art of being a healing presence. A guide for those in caring
relationships. Willogreen Publishing.)