End of Life Choices in

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.

Dying in America Is Harder Than It

Has To Be
Dying in America, IOM report, Sept. 17,
2014

The American health care system is poorly

equipped to care for patients at the end of
life.
Despite efforts to improve access to hospice
and palliative care over the past decade, the
committee identified major gaps,

a shortage of doctors proficient in palliative care,

reluctance among providers to have direct and
honest conversations about end-of-life issues, and
inadequate financial and organizational support for
the needs of ailing and dying patients.

 We all share in common one reality: Were all going to

die, said Dr. Philip Pizzo, co-chair of the committee, at
the public release of the report Wednesday. We have
the ability to accomplish [a strong end-of-life care
system], but we have a long way to go.
Just talking about death and dying can ignite fear and
controversy: Five years ago, the health laws proposal
for Medicareto reimburse doctorsfor counseling
patients about living wills and advance directives
became a rallying cry for Republican opponents of the
law who warned about so-called death panels. The
reimbursement provision was removed from the
Affordable Care Act before it passed. This was
recently re-instated.

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

Wilson, E. (2014). Not-for-profit difference in hospice care. Washington Post Coverage.

http://www.leadingage.org/Not-for-Profit_Difference_in_Hospice_Care_Washington_Post_Coverage.a
spx

For-profit hospices spend less on nursing per

patient.Nonprofit hospices typically spent about $36 a
day per patient on nursing visits; for-profit hospices spent
$30 per day, or 17% gap between for-profits and
nonprofits remains whether the hospices are old or new.
For-profit hospices are less likely to provide more
intense levels of care for patients undergoing a
crisis in their symptoms.Nonprofit hospices are much
more likely to provide the more intense services
continuous nursing and inpatient care required by
patients whose symptoms are difficult to control.
Nonprofits offered about 10 times as much of this per
patient per day as did for-profits.

 For-profit hospices are less likely to have

sent a nurse to a patients home in the last
days of life.While hospices of both kinds usually
dispatch a nurse to see a patient at some point
during the last 2 days of life, for-profit hospices
are more likely to fail in this regard, according to
the analysis. A typical patient at a for-profit
hospice is 22% less likely to have been visited by
a nurse during this window than a patient at a
nonprofit hospice, the numbers show, a sign that
for-profit hospices may be less responsive during
this critical time.

 For-profit hospiceshave a higher percentage

of patients who drop out of hospice care
before dying.High rates of dropout are often
viewed as a sign that patients were pushed out of
hospice when their care grew expensive, left
dissatisfied or were enrolled for hospice even
though they were not close to death.
22% of the for-profits in the sample exceeded
the Medicare cap at least once in the
previous 5 years.Only 4% of nonprofits did. And
among the for-profits that exceeded the cap,
disenrollment was even higher 13%.

Issues for whom?

Patients
Families
Health Care Professionals
Facilities: Hospitals, Nursing Homes,
Hospices
Governments
Insurers

Are we making progress?

Many advanced cancer patients receive aggressive
treatments in the last weeks of their lives, and hospice care is
often not discussed until it is too late to be of any real comfort
or benefit.
Fewer than half of patients in 50 academic medical centers
received hospice services. Hospice or palliative care services
have been shown to help treat pain and allow patients to die
at home.
Dartmouthatlas.org (2010)

Letting Go

What should medicine do when it cant save your

life?
by Atul Gawande

The New Yorker, August 2, 2010

http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawand
e#ixzz0vYz5LvfN

Atul Gawande. (2014). Being Mortal: Medicine

and What Matters in the End..

THE LADY & THE REAPER

HTTP://WWW.YOUTUBE.COM/WATCH?V=ZRQ21IIX1IC

(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?

pain and symptom management,

clear decision making,
preparation for death,
completion,
contributing to others, and
affirmation of the whole person]

3. How can family and professional care givers respond to the

holistic needs of dying persons? What does it mean to be a
healing presence for the dying and their families?

3. Do persons have the right to choose the time

and manner of their dying? If you grant this
right, are health care professionals and
institutions obligated to meet all the requests
patients make, so long as they are requests for
legal interventions. Does the public (taxpayers)
have an obligation to fund the services you
desire?
4. Is reasonable to assume that once we grant the
right to die this may evolve into a duty for some
to die so that the resources they are consuming
may be better allocated? Should government
or some other body be granted the authority to
determine who lives and who dies?
5. In what concrete ways do individual beliefs,
values and faith commitments influence our
response to the above questions?

Death and Dying in the U.S. Four

Paradigms
Death as a natural part of life
The "medicalization" of dying
Most Americans die in hospitals (63
percent), and another 17 percentdie
in institutional settings such as longterm care facilities

Hospice/Palliative Care
Death on Demand

Assumptions Underlying Approaches

to Death & Dying
Life: No longer a "mystery" to be
contemplated but a "problem" to be
solved
Importance of control/mastery
Absolutization of autonomy

Shifting care models:

Disease-modifying Therapy

urative, restorative, palliative intent)

Supportive/Palliative
Care

Presentation

6m Death

Suffering-Relieving Therapy
Bereavement
Care

State of the Science

How People Die in the U.S.

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.

 Twenty-one percent complained that

the dying person was not always
treated with respect. Compared with a
home setting this was 2.6 times higher
in a nursing home and 3 times higher
in a hospital.
One in three respondents said family
members did not receive enough
emotional support. This was about 1.5
times more likely to be the case in a
nursing home or hospital than at
home.

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

Promoting Excellence: Seven End-of-Life

Care Domains (RWJ)
National Quality Forum

Why I Hope to Die

at 75

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

Do You Know These

Women?

Two women captured our hearts.

Both were dying of brain cancer.
Both taught us to cherish lifethat nothing is greater than the
human spirit.

Brittany Maynard, 29,

fought for the right to die
with dignity. On
Saturday, November 1,
2014, Maynard, who
suffered from terminal
brain cancer took her last
breath. She had moved
to Oregon to end her life
under that states Death
with Dignity Act.

Lauren Hill, 19,

fought for a dream
to play in a
college basketball
game before she
dies. Her cause
was infectious as
she conveyed a
never-give-up spirit
[CNN News, Nov. 6, 2014].

Emerging Voices
NPR host Diane Rehm emerges as
key force in right-to-die debate

February 17, 2015

My Own Life, Oliver Sacks on

Learning he has terminal cancer

February 19, 2015

 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

Dr. Paul Kalanithi

Should Terminally Ill Patients Be

Able to End Their Lives
On February 11, 2014, a judge dropped the felony, assisted suicide
charges against Barbara Mancini, a Pennsylvania nurse accused of
handing her 93-year-old, terminally ill father a nearly full bottle of
legally prescribed morphine. The nurse reportedly told a police
officer that her father wanted to die and she handed him the
morphine, fulfilling his wish. A hospice nurse called 911 after
Mancinis father took the morphine. He was admitted to the hospital
and died four days later. At issue is whether Mancini gave her father
the morphine to relieve his pain or to help him commit suicide. The
judge who dropped the assisted suicide charges believed that there
was insufficient evidence to support prosecution of Mancini. The
case is making many family members and nurses think twice,
fearing that even appropriately administering pain medication can
land one in jail if the patient dies. Also being debated is whether or
not the hospice nurse who called 911 acted appropriately.
http://www.cbsnews.com/videos/ending-life-gold-rush-saving-history/

 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?

Last Resort Palliative

Interventions

Last Resort Palliative

Interventions
Ranked From Least to Most Controversial Ethically
Standard pain management
Forgoing life-sustaining therapy
Voluntarily stopping eating and drinking
Terminal sedation: heavy sedation to escape pain,
shortness of breath, other severe symptoms (newer
terminology, proportionate palliative sedation [PPS]
and palliative sedation to unconsciousness [PSU])
Assisted suicide
Non-voluntarily stopping eating and drinking
Voluntary active euthanasia

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.]

 In the words of theologian Karl Rahner,

spirituality is . . . simply the ultimate depth of
everything spiritual creatures do when they
realize themselveswhen they laugh or cry,
accept responsibility, love, live and die, stand
up for truth, break out of preoccupation with
themselves to help the neighbor, hope against
hope, cheerfully refuse to be embittered by the
stupidity of daily life, keep silent, not so that evil
festers in their hearts, but so that it dies there
when, in a word, they live as they would like to
live in opposition to selfishness and to the
despair that always assails us (1971, p. 229).

 What is the difference between pain

and suffering?
What is the difference between cure
and healing?

Questions of Value and

Meaning
In the final analysis, every dying person who retains the capacity to hear and to
understand the call of death faces two important sets of questions: questions of
value and questions of meaning. The first set of questions relates to value. At
some level, the dying person must ask questions such as the following:
Do I, as an embodied person, now dying, have any value here and now as me dying?
Has my life, as I have lived it until now, had any value? Will there be anything of value
about me that persists after I have died?

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.)