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
A quick dedication

• Mary Grace Phillips

• Harry Brady
 Learning 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 makingfor 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/death with dignity.
• 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.
 First a thank you…
• Cancer researchers
• Professional Caregivers
• Family Caregivers
• Donors
• Resource Centers
 Shifting care models:

Disease-modifying Therapy
(curative, restorative, palliative intent)

Supportive/Palliative Care

Presentation 6m Death
Suffering-Relieving Therapy Bereavement
Care
 When you hear that you have a
life-threatening cancer, what do
you want? What do you hope for?

Mark’s Story
 Many Dying Cancer Patients Try
Useless Treatments--WebMD
• ... A study of just over 100000 patients in the
United States found that the urge to undergo
ultimately fruitless cancer treatment "is not a
rare phenomenon," said study author Dr.
Helmneh Sineshaw, of the American Cancer
Society. .
://www.webmd.com/cancer/news/20190416/
many-dying-cancer-patients-try-useless-
treatmentsApr 15, 2019
• More than one-quarter underwent active treatment,
such as surgery or chemotherapy, in the final weeks of
life, said Sineshaw, director of treatment patterns and
outcomes research for the cancer society.
• "Patients newly diagnosed with metastatic cancer who
die soon after diagnosis are a unique population," he
said. The findings suggest a need to better identify
people who would fare better with palliative care --
aimed at symptom and stress relief -- rather than
aggressive and expensive treatments.
 Deficiencies at MD Anderson Posed
'Jeopardy' to Patients
November 07, 2019
• More details are now emerging of the serious deficiencies in patient care that
were identified at the University of Texas MD Anderson Cancer Center, Houston,
last summer during an inspection by the Centers for Medicare & Medicaid Services
(CMS).
• That inspection, carried out in August 2019, identified deficiencies in nine of the
23 areas surveyed, including nursing, pharmacy, outpatient services, food services,
patient rights, infection control, and surgical services. Some of these deficiencies
posed an "immediate jeopardy to the health and safety of all patients," the CMS
stated in its report.
• The CMS report also highlighted two patient deaths that appear to be related to
the deficiencies. One patient death appears to be related to the failure to notify
the physician of patient changes; the other was the result of a medication error.
• This comes on top of the two investigations of operations at MD Anderson in April
and May 2019, which found deficiencies in nursing care, laboratory services,
patients' rights, quality assurance, and institutional oversight. Those investigations
were prompted by the death (in December 2018) of a 23-year-old leukemia
patient who received a contaminated blood product, as previously
reported by Medscape Medical News.
• https://www.medscape.com/viewarticle/920973_print
 Memorial Sloan Kettering, you’ve betrayed my trust
BY STEVEN PETROW, OCTOBER 3, 2018
https://www.statnews.com/2018/10/03/memorial-sloan-kettering-betrayed-my-trust/

• I trusted Memorial Sloan Kettering Cancer Center and

believed in it. For more than 30 years, my family and I
have literally put our lives in its hands. But it has
betrayed my trust and that of many other patients and
their families.
• That history and attachment is why I felt such
heartbreak when the New York Times and
ProPublica reported that the center’s chief medical
officer, Dr. José Baselga, had failed to disclose millions
of dollars’ worth of payments from pharmaceutical and
other health care companies. It angered me to read
that he omitted his “financial ties from dozens of
research articles.”
 Where Patients With Cancer Die: A
Population-Based Study, 1990 to 2012.
• From 1990 to 2012, the proportion of cancer deaths in
hospital decreased from 63.4% to 50.9%, and in nursing
homes increased from 8.2% to 22.5%. After the year 2000,
the proportions in hospices and at home were both below
15%.
• The trend for more cancer deaths to occur in nursing
homes is likely to continue, but nursing homes generally
lack the resources and skilled staff to provide quality
palliative care. Models of palliative care delivery should
take account of patient preferences, the growth of terminal
cancer care in nursing homes, and apparent inequities.
• J Palliat Care. 2018 Nov 28:825859718814813. doi:
10.1177/0825859718814813. [Epub ahead of print]
 End-of-Life Care for People Who Have Cancer
https://www.cancer.gov/about-cancer/advanced-
cancer/care-choices/care-fact-sheet
• What does end-of-life care mean for people
who have cancer?
• How do doctors know how long a person will
continue to live?
• When should someone call for professional
help if they’re caring for a person who has
cancer at home?
• When is the right time to use hospice care?
• What are some ways to provide emotional support to a
person who is living with and dying of cancer?
• What other issues should caregivers be aware of?
• What are some topics patients and family members
can talk about?
• How should caregivers talk to their children about
advanced cancer?
• How does cancer cause death?
• What are the signs that death is approaching, and what
can the caregiver do to make the person comfortable
during this time?
• What are the signs that the person has died?
• What needs to be done after the person has died?
 Issues for whom?
• Patients
• Families: Aunt Annabel
• Health Care Professionals
 The following clinical situations were recently identified as
creating the highest degree of moral distress for critical care
nurses

1. Continuing to participate in care for a

hopelessly ill person who is being
sustained on a ventilator, when no one will
make a decision to pull the plug”
2. Following a family’s wishes to continue
life support even though it is not in the
best interest of the patient
3. Initiating extensive life-saving actions
when I think it only prolongs death
4. Following the family’s wishes for the
patient’s care when I do not agree with
them but do so because the hospital
administration fears a lawsuit
5. Carrying out the physician’s orders for
unnecessary tests and treatments for
terminally ill patients [Elpern, E.H., Covert, B. &
Cleinpell, R. (November 2005). Moral distress of staff nurses in a
medical intensive care unit. American Journal of Critical Care, 14(6),
523-530.]
 Issues for whom?
• Facilities: Hospitals, Nursing Homes,
Hospices
• Governments
• Insurers
Letting Go
What should medicine do when it can’t 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
 The Lady and the Reaper
• What might have been
the impetus for the
film, The Lady and the
Reaper?
• What were you
experiencing while
viewing this film?
https://vimeo.com/99858
40
 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-life “look like?” 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?
pain and symptom management,
clear decision making, preparation for death,
completion, contributing to others, and
affirmation of the whole person
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?
 New Cigna Study Reveals Loneliness at Epidemic Levels in America

Research Puts Spotlight on the Impact of Loneliness in the U.S. and Potential Root
Causes (May 1, 2018)
https://www.multivu.com/players/English/8294451-cigna-us-loneliness-survey/

The survey of more than 20,000 U.S. adults ages 18 years and older revealed some
alarming findings:
• Nearly half of Americans report sometimes or always feeling alone (46 percent) or
left out (47 percent).
• One in four Americans (27 percent) rarely or never feel as though there are people
who really understand them.
• Two in five Americans sometimes or always feel that their relationships are not
meaningful (43 percent) and that they are isolated from others (43 percent).
• Generation Z (adults ages 18-22) is the loneliest generation and claims to be in
worse health than older generations.
Suicides Have Increased. Is This an Existential Crisis?
Clay Routledge, The New York Times, June 23, 2018

• Suicide deaths are up 25% in the U.S. since

1999 across most ethnic and age groups.
• I am convinced that our nation’s suicide crisis
is in part a crisis of meaninglessness. …greater
detachment and a weaker sense of belonging
are increasing the risk of existential despair.
 Death and Dying in the U.S. Four
Paradigms

• Death as a natural part of life

• The "medicalization" of dying
• 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 ½ 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.
 Opening Reflection
• How many of us can think back quickly to an
experience when someone did not die well?
 Finally, national standards/guidelines

• National Consensus Project for Quality

Palliative Care, 4th ed. (2018). Clinical
practice guidelines for quality palliative care.
• https://www.nationalcoalitionhpc.org/ncp/
• Promoting Excellence: Seven End-of-Life
Care Domains (RWJ)
• http://www.promotingexcellence.org/downloads/
eolc_domain_worksheets.pdf
• National Quality Forum
 Dying in America
2014 Institute of Medicine

• For patients and their loved ones, no care decisions are more
profound than those made near the end of life. For the millions of
Americans who work in or with the health care sector—including
clinicians, clergy, caregivers, and support staff—providing high-
quality care for people who are nearing the end of life is a matter of
professional commitment and responsibility. Health system
managers, payers, and policy makers, likewise, have a responsibility
to ensure that end-of-life care is compassionate, affordable,
sustainable, and of the best quality possible.
• A substantial body of evidence shows that broad improvements to
end-of-life care are within reach. In Dying in America, a consensus
report from the Institute of Medicine (IOM), a committee of experts
finds that improving the quality and availability of medical and
social services for patients and their families could not only
enhance quality of life through the end of life, but may also
contribute to a more sustainable care system.
Do You Know These Women
 Two women captured our hearts.
Both were dying of brain cancer.
Both taught us to cherish life—that nothing is greater than the human spirit.

• Brittany Maynard, 29, • Lauren Hill, 19, fought for

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 state’s Death
with Dignity Act.
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].
 Reflective Practice
When is it assisted suicide or euthanasia?

Critical Distinctions
• Suicide and Assisted Suicide
• Active and Passive Euthanasia
• Withholding and Withdrawing LSMT
• In November 2015, the Economist invited subscribers to
visit their film site to watch “24 & Ready to Die,” a narrative
about Emily, a young woman who found life unbearable
and requested physician assisted dying under Belgium’s
euthanasia law. The release of this narrative followed an
influential article in The New Yorker entitled “The Death
Treatment” by Rachel Aviv (June 22, 2015) critiquing
euthanasia as a “treatment” for incurable psychological
suffering. While many are adamantly against any physician
involvement in suicide or euthanasia and others adamant
proponents of the same, the majority of us are unsure of
what we ought to think and believe about these as options
in a moral society, about what role physicians and other
clinicians should play in counseling and assisting, and about
what the criteria should be, including whether or not
incurable psychological suffering is sufficient ground for a
request to end one’s life.
 Discussion Questions

• Should Assisted Suicide and Euthanasia be

allowed for patients who suffer from severe and
incurable distress, including psychological
disorders?
• In what way, if any, should clinicians’ beliefs
about assisted dying inform what they say or
don’t say when counseling patients who want to
control how and when they die?
• What value does a film like “24 & Ready to Die”
have in educating the public about assisted
suicide and euthanasia?
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 (VSED)
• 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
• Nonvoluntarily stopping eating and drinking
• Voluntary active euthanasia—also for psychological
suffering?
 Scenario 1: Mary
• Mary is an educated, articulate, wealthy and until recently,
healthy 85 year old, single woman. She has lived a rich and
full life and sees nothing but diminishment in her future
with a life increasingly constricted to her apartment. She
does have advanced osteoporosis. A recent fall resulted in
a fracture. When she told someone that she wished she
could just fall asleep and never wake up, her friend told her
that she should just stop eating and drinking. Her friend
works for hospice and Mary is now asking this hospice to
care for her until she dies. The medical director has asked
the hospice ethics committee to make a recommendation
about the advisability of admitting Mary to the inpatient
hospice unit so she can be cared for as she grows weaker.
• No one doubts Mary’s decision-making capacity. Mary is
single and has no family. None of her friends believes she is
doing the right thing and no one is willing to care for her as
she dies. Initial responses from the hospice senior
management team were varied. “No way should we be
doing this… Mary is killing herself and asking us to be
complicit.” “There must be lots of folks who need help like
this; perhaps we should develop this as a new product
line.” There were also questions about whether or not
hospice physicians and nurses should start recommending
terminal dehydration to patients like Mary who want to be
dead but who do not have life-sustaining treatments to
stop. Should there be a policy about voluntarily stopping
eating and drinking (VSED) and what should it say?
 Reflective Practice
• How should health care professionals respond
to Mary as she articulates the desire to die
because life is unbearable? What is the
“standard of care?”
• When Mary stated that she wished she could
take a pill and not wake up she was told that she
could cause her death if she simply stopped
eating and drinking. Should terminal
dehydration be recommended to someone like
Mary by a health professional?
 Scenario 2: Janet
• Janet is a 65 year old woman who has battled cancer for 27 years—
with five major recurrences. Her husband died early and she raised
two wonderful sons. She buried her mother and a sister. She is
Lutheran and played the organ for her church for years. Now she is
tired, tired, tired. For years she fought the cancer wanting to raise
her sons, get them through college, and see a grandchild. But at
present she is finding life too threatening and she wants to “go to
God.” She has researched her options on the internet and comes to
hospice wanting “palliative sedation.” Her sons support her. The
hospice has a policy which states that palliative sedation needs to
be used for the imminently dying and that it should not be used to
treat existential suffering or angst. Janet does not meet these
criteria. When she is told that palliative sedation is used for
intractable pain, delirium, agitation, dyspnea, and then asked to
evaluate her pain on a scale of 1 (no pain) to 10 (worst pain) she
says her pain is about a 1 or 2.
• She says that she will not commit suicide because she does not
want her sons to have to live with this legacy. She also says that she
does not want to stop eating and drinking because this will “drag”
on for days. Staff report that she uses lots of “code language” and
winking seeming to suggest that she knows they cannot give her a
lethal prescription because assisted suicide is illegal in their state
but that they should be able to accomplish the same thing via
palliative sedation. Some of the staff are angry that she wants
them to do what she will not do for herself. Others believe that the
hospice policy is wrong and that palliative sedation should be
allowed for existential suffering since it most certainly is a
“distressing symptom.” What recommendations should come from
the hospice ethics committee or consultants about meeting Janet’s
needs?
 Reflective Practice
• How should health care professionals respond to
Janet as she articulates the desire to die because life
is unbearable? What is the “standard of care?”
• Most policies and procedures on palliative sedation
restrict its use to the imminently dying and
recommend that it not be used for “existential angst
or suffering.” Is this appropriate. Should it be an
option for individuals like Janet?
• Is spiritual care mandatory for these individuals or an
optional service? What would good spiritual care
“look like” for Mary and Janet?
 Scenario 3: George and Pat
• George is 80 years-old and has a type of
dementia that has resulted in his being
assaultive. His wife has been asked to remove
him from 9 residential aging facilities because
he endangered staff and other residents. He
is now in a new nursing home and in hospice
where clinicians have “solved” his aggression
but not without exacerbating his changes in
thinking and reasoning, confusion, and
generalized alertness.
• At present he is able to eat and seems to enjoy
eating but when food is placed in front of him his
brain does not tell him to bring it to his mouth…
thus he needs assistance with eating and
drinking. He has an advance directive which
states he would not want medical nutrition and
hydration if terminally ill—but does not mention
hand feeding. His long-suffering wife, Pat, states
that he would never have wanted to live like this
and asks repeatedly that the aides bring his tray
but do not help him eat if he does not do this on
his own. Should his caregivers honor Pat’s
request and not hand-feed George?
 Reflective Practice
• Is hand-feeding an elective intervention like
medical nutrition and hydration that can be
withheld or discontinued or is it more like
hygiene and other sorts of obligatory care
that health care professionals must decide.
• If George had an advance directive
specifically addressing hand-feeding in
instances of dementia, would you honor it?
Should you honor it?
 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
person’s 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 themselves—when 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
presence—you 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.)
 Preparing One’s Attention and Intention
There are many ways different people prepare their attention and
intention. I have developed a simple ritual for myself. Before I enter my
patient’s room, I stop. While washing (or gelling) my hands, I prepare
my attention. I bring my awareness to my feet on the ground. then to
my breath. and to the flow of water (or gel) over my hands, as if they
are washing aside (evaporating away) my preoccupations, leaving only
my best intentions. I make a blessing before I dry my hands (or as my
hands are drying): I lift up my hands. May I be of service.
Then I take a full breath and remind myself: What matters for you, my
patient, is what matters for me. May I meet you in your world as it is
for you and accompany you from there. Whatever time I have with
you, may I be fully present. May I serve you with all of my life
experience as well as my expertise. May I listen fully with a generous
heart, without judgment, and without having to fix what cannot be
fixed. May my presence allow you to connect with your source of
comfort, strength, and guidance as it is for you. May I be well used.
Before entering the room, I stop again. take another full
breath to keep my focus. and then I knock. When I enter, I
scan the room, ‘‘touch’’ the patient with my eyes, then
with my voice, and then, as appropriate, with my hand. I
cannot know who and what I will encounter when I enter
the room. What stories, what emotions. Will I even be
welcome? I do know that my preparation can facilitate
meaningful connection. It also can open the way to what
may normally be unseen, which can announce itself to
any of us at unexpected times, in unexpected ways, with
unexplainable, sometimes extraordinary, moments of
awe. Such moments can help sustain one through
challenging times. Chaplain Bruce D. Feldstein, MD
 Reflective Practice
• What would spiritual care “look like” for Mary,
Janet, George and Pat? Is spiritual care
optional, superficial, trivial, mandatory? Who
is responsible for providing spiritual care?
Responses to life-threatening illness and mortality.
• Kalanithi, P. (2016). When breath becomes air.
New York: Random House.
• Sacks, O. (2015). Gratitude. New York: Alfred A.
Knopf.
“I am now face to face with dying but I am not finished
with living.”
And this song: Tim McGraw – Live like you were
dying
• https://www.youtube.com/watch?v=_9TShlMkQ
nc