End of Life Choices in Cancer

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End of Life Issues in Cancer Care

Are we making progress?

Carol Taylor, PhD, MSN, RNGeorgetown University School of Nursing and Health Studies

Kennedy Institute of Ethics

[email protected]

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Dying in America Is Harder Than It Has To Be

IOM report, Sept. 17, 2014

The American health care system is poorlyequipped to care for patients at the end of life.

Despite efforts to improve access to hospice and

palliative care over the past decade, thecommittee 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.

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Just talking about death and dying can ignitefear and controversy: Five years ago, thehealth laws proposal for Medicaretoreimburse doctorsfor counseling patients

about living wills and advance directivesbecame a rallying cry for Republicanopponents of the law who warned about so-

called death panels. The reimbursementprovision was removed from the AffordableCare Act before it passed.

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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 painand allow patients to die at

home.Dartmouthatlas.org (2010)

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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]

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Questions for Thought

Do people have the right to choose the time and manner oftheir dying? If you grant this right, are health careprofessionals and institutions obligated to meet all therequests patients make, so long as they are legal? Dotaxpayers have an obligation to fund all the servicesrequested?

Is it reasonable to assume that once we grant the right todie, this may evolve into a duty for some to die so that theresources they are consuming may be better allocated?Should government or some other body be granted theauthority to determine who lives and who dies?

How do individual beliefs, values and faith commitmentsinfluence our response to these questions?

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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

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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

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SUPPORT STUDY-1995

Half of conscious patients had moderate to severe pain atleast 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 ofpatient death

40% of the patients spent at least 10 days in ICU

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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

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TENOSTUDY-2004

One in four people who died did not receive enough painmedication and sometimes received none at all. Inadequatepain management was 1.6 times more likely to be a concernin a nursing home than with home hospice care.

One in two patients did not receive enough emotionalsupport. This was 1.3 times more likely to be the case in aninstitution.

One in four respondents expressed concern over physiciancommunication and treatment options.

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Twenty-one percent complained that the dyingperson was not always treated with respect.

Compared with a home setting this was 2.6times higher in a nursing home and 3 timeshigher in a hospital.

One in three respondents said family membersdid not receive enough emotional support. Thiswas about 1.5 times more likely to be the casein a nursing home or hospital than at home.

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Finally, national standards/guidelines

National Consensus Project for Quality PalliativeCare: Clinical practice guidelines for qualitypalliative care, 3rded. (2013).http://www.nationalconsensusproject.org/guidelines_download2.aspx

Promoting Excellence: Seven End-of-Life Care

Domains (RWJ)

National Quality Forum

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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

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Do You Know These Women?

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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 diewith dignity. On Saturday,

November 1, 2014,Maynard, who sufferedfrom terminal braincancer took her lastbreath. She had moved

to Oregon to end her lifeunder that states Deathwith Dignity Act.

Lauren Hill, 19, fought fora dreamto play in acollege basketball game

before she dies. Hercause was infectious asshe conveyed a never-give-up spirit [CNN News, Nov. 6, 2014].

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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 ofhanding her 93-year-old, terminally ill father a nearly full bottle oflegally prescribed morphine. The nurse reportedly told a police officerthat 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 dayslater. At issue is whether Mancini gave her father the morphine torelieve his pain or to help him commit suicide. The judge who droppedthe assisted suicide charges believed that there was insufficientevidence to support prosecution of Mancini. The case is making manyfamily members and nurses think twice, fearing that even

appropriately administering pain medication can land one in jail if thepatient dies. Also being debated is whether or not the hospice nursewho called 911 acted appropriately.http://www.cbsnews.com/videos/ending-life-gold-rush-saving-history/

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If you were Mr. Yourshaws daughter and a nurse, would you have handedhim 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 thewisdom 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 thatthey were just doing the regulatory minimum and failed to address hissuffering. He sees Mr. Yourshaws death as emblematic of how we arefailing our frail elders, the chronically ill, the vulnerable. He does not

believe legalizing assisted suicide is the answer. So what we are saying toMr. Yourshaw is, We are not going to treat your pain, we are not going totrain 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 writethat lethal prescription. In what world is that a progressive, positivedevelopment?

Was it appropriate for the hospice nurse to call the police when Mr.Yourshaws daughter, Barbara Mancini, shared that she had handed herfather the full bottle of morphine which he proceeded to drink? Thehospice stated that they needed to follow the law. Barbara wasimmediately arrested and faced a possible 10 year prison sentence.

Can better life care and death with dignity co-exist? Should they?

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Last Resort Palliative

Interventions

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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 (newerterminology, proportionate palliative sedation [PPS]and palliative sedation to unconsciousness [PSU])

Assisted suicide Non-voluntarily stopping eating and drinking

Voluntary active euthanasia

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Spiritual Care

Care that enables individuals to meet basic spiritual needs: (1) need formeaning and purpose, (2) need for love and relatedness, and (3) need forforgiveness

Spiritual care models offer a framework for health care professionals toconnect 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. Healingis distinguished from cure in this context. It refers to the ability of aperson to find solace, comfort, connection, meaning, and purpose in themidst of suffering, disarray, and pain. The care is rooted in spiritualityusing compassion, hopefulness, and the recognition that, although a

persons life may be limited or no longer socially productive, it remains fullof possibility. [Puchalski,, C. , Ferrell, B., et. al. (2009). Improving thequality of spiritual care as a dimension of palliative care: The report of theconsensus conference. Journal of Palliative Medicine, 12(10), 890.]

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What is the difference between pain and

suffering?

What is the difference between cure and

healing?

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Healing Presence

Healing presence is the condition of being consciously andcompassionately in the present moment with another or with others,believing in and affirming their potential for wholeness, wherever theyare in life.

Your healing presence can take many forms. You cannot dohealingpresenceyou becomehealing presence, expressing it gently yet firmly invarious ways: Listening, holding, talking, being silent, being still, being inyour body, coming home to yourself, being receptive. You can deepenyour healing presence by slowing down, by doing only one thing at a time,by reminding yourself regularly to come back to the present moment. Youcan encourage healing presence by being appreciative, forgiving, humble

kind. (Miller, E.J. & Cutshall, S.C. 2001. The art of being a healingpresence. A guide for those in caring relationships. WillogreenPublishing.)

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Letting GoWhat should medicine do when it cant save your life?byAtul Gawande

The New Yorker, August 2, 2010http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz0vYz5LvfN

Atul Gawande. (2014). Being Mortal: Medicine andWhat Matters in the End..

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THE LADY & THE REAPERHTTP://WWW.YOUTUBE.COM/WATCH?V=ZRQ21IIX1IC

(2009)DIRECTED BY JAVIER RECIO GRACIA