End of Life Issues in Cancer Care

Are we making progress?

Carol Taylor, PhD, MSN, RN
Georgetown University School of Nursing and Health Studies
Kennedy Institute of Ethics

taylorcr@georgetown.edu

Dying in America Is Harder Than It Has To Be

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.

 Just talking about death and dying can ignite

fear and controversy: Five years ago, the
health laws proposal for Medicare to
reimburse doctors for counseling patients
about living wills and advance directives
became a rallying cry for Republican
opponents of the law who warned about socalled death panels. The reimbursement
provision was removed from the Affordable
Care Act before it passed.

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)

Good Care
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]

Questions for Thought

Do people 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 legal? Do
taxpayers have an obligation to fund all the services
requested?

Is it 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?
How do individual beliefs, values and faith commitments
influence our response to these 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 percent die in institutional
settings such as long-term 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

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 half of the 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.asp
x

Promoting Excellence: Seven End-of-Life Care

Domains (RWJ)
National Quality Forum

Why I Hope to Die at 75

An argument that society and

familiesand 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 dreamto play in a
college basketball game
before she dies. Her
cause was infectious as
she conveyed a nevergive-up spirit [CNN News, Nov. 6, 2014].

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.]

 What is the difference between pain and

suffering?
What is the difference between cure and
healing?

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.)

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_gawande#ixzz0v
Yz5LvfN

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