End of Life Issues in Cancer Care Are We Making Progress?

Sarah Vittone RN, MSN, MA

Georgetown University Center for Clinical Bioethics

Issues for whom?

Patients Families Doctors Nurses Insurance Facilities

Are we making progress?

Q. I have stage 4 cancer and after 5 years of receiving chemotherapy, I'm being told there are no more treatment options for me. Because I survived so long with a terminal diagnosis, some people in my family don't seem understand how serious this is. How can I help them understand?
Q. My dad has terminal cancer and he is currently at home. He has no insurance, but Medicaid is pending. We're trying to get hospice or some support. What can I do?

Cancercare.org

Are we making progress?

How do doctors know? Although doctors may be able to estimate the amount of time someone will continue to live based on what they know about that person, they might be hesitant to do so. They may be concerned about over- or under-estimating the persons remaining life span. They also might be fearful of giving false hope or destroying a person's will to live.
Cancer.gov (NCI factsheet)

Are we making progress?

One in three older adults with advanced cancer spends their last days in hospitals and intensive care units (ICUs), often with doctor's employing Herculean efforts to prolong their life. And this may or may not be what they wanted.

Dartmouthatlas.org (2010)

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.

Cancer patients were more likely to receive aggressive treatment in the last weeks of life in Manhattan; Los Angeles, Orange County, Calif., and Chicago. By contrast, rates were much lower in Minneapolis, Des Moines, Iowa, and Seattle.

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)

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 hopelessly ill person who is being sustained on a ventilator, when no one will make a decision to pull the plug 2. Following a familys 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 familys wishes for the patients care when I do not agree with them but do so because the hospital administration fears a lawsuit 5. Carrying out the physicians 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.]

Letting Go
by Atul Gawande

What should medicine do when it cant save your life?

The New Yorker, August 2, 2010 http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz0v Yz5LvfN

THE LADY & THE REAPER

(2009) DIRECTED BY JAVIER RECIO GRACIA

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

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 making for the seriously ill and dying Describe the recurrent and evolving ethical issues related to decision making for the seriously ill and dying

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?

Death and Dying in the U.S. Four Paradigms

Death as a natural part of life The "medicalization" of dying

70% of Americans die in a hospital (39%) or nursing home (31%)

Hospice/Palliative Care Death on Demand

The broader context:

At centurys turn: at home: a family, communal, religious (nonmedical) event of accidents, infectious disease

trends in how & where we die, past & present

By the 1970s: of heart disease, cancer, stroke an institutional, professional, & technological process -- in hospitals, i.e., the medicalization of dying

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 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 (2004). Clinical practice

guidelines for quality palliative care (2009). http:

://www.nationalconsensusproject.org Promoting Excellence: Seven End-of-Life Care Domains (RWJ) National Quality Forum

Systemic Barriers to Appropriate End-of-Life Care

Lack of training for physicians, nurses, and other health professionals in techniques of palliative care, including pain and symptom management (EPEC, ELNEC) Antiquated regulations that constrain the prescribing of narcotic pain medications Misaligned incentives in health insurance benefits at the end-of-life The cultural baggage of a death-denying culture

Critical milestones, ethical & legal

Hippocrates on the limits of medicine &

Dame Cicely Saunders founds St. Christophers Hospice, 1967, while Luis Kutner proposes creation of living wills

the integrity of professional clinical judgment

Elizabeth Kubler-Rosss On Death and Dying:

What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families, 1969
First hospice in the U.S., 1974

Critical milestones, ethical & legal

In re Quinlan, 1976
AMA policy: withdrawal of life support to permit death =
euthanasia = murder
right to privacy health care (Rx) decisions States interest
in preserving life weakens & individuals right to privacy grows as medical interventions become more invasive & prognosis for recovery diminishes ... persons right to privacy can be asserted by a guardian when the person is incompetent

1976 Natural Death Act passed by California

First state statute recognizing living wills

Critical milestones, ethical & legal

Cruzan v. Director, Missouri Dept of Health, 1990

1st Supreme Court decision to recognize right of dying
patients to refuse treatment states can, but need not require clear & convincing evidence of patients wishes before support can be withdrawn

Also in 1990: Jack Kevorkian assists in death of

Janet Adkins

Patient Self Determination Act, 1991

Federally funded health care facilities MUST inform patients
of right to execute advance directives

Critical milestones, ethical & legal

1994: Oregon becomes the first state to pass referendum legalizing physician assisted suicide: Washington, the next state, doesnt follow until 2009. Now also legal in Montanna.
Compassion in Dying v. State of Washington and Quill v. Vaco, 1997
Supreme Courts unanimous finding: no
constitutional right to assisted suicide; morally significant distinction between refusing, withholding & withdrawing treatment AND assisted suicide left the door open to the states

Decision making in the care of seriously or terminally ill patients

Established practices

Controversial issues

Voluntary, informed refusal of treatment by patients w/ capacity Withholding and withdrawing treatment on behalf of incapacitated patients on basis of substituted judgment or best interests Palliative and hospice care Voluntarily stopping eating and drinking Palliative sedation (a.k.a. terminal sedation) Assisted suicide and euthanasia

Patient/surrogate demands for futile Rx The

troubled concept of futility

Continuum? Logical extension of respect for autonomy/right to privacy arguments?

Voluntary, informed refusal

Withholding & Withdrawing

Palliative & Hospice Care

Assisted Suicide

Euthanasia

Patient or surrogate demands for futile Rx

Continuum? Application of the clinicians duty of compassion? Principles of beneficence or nonmaleficence?

or
Are there limits to patient autonomy/privacy? Is there a point beyond which clinicians cannot or should not go?

Fears Associated with Dying and Death

Fear of Losing Control Fear of Not Being Allowed to Die or of Being Forced to Die Before One is Ready Fear of Intractable Pain and Human Suffering

Fears Associated with Dying and Death

Fear of Becoming Increasingly Dependent Fear of Loss of Human Dignity Fear of an Endless Succession of Meaningless Days: I have nothing to live for.. Economic Fears

http://www.dw.de/image/0,,715204_4,00.jpg

Aging with Dignity American Academy of Hospice and Palliative Medicine (AAHPM) Americans for the Better Care of the Dying (ABCD) American Geriatric Society American Psychological Association Cancer.org Cancercare.org Center to Advance Palliative Care (CAPC) Compassion and Choices Education for Physicians on End-of-Life Care (EPEC) End-of-Life Nursing Education Consortium (ELNEC) Growthhouse.org improving care for the dying Hospice and Palliative Nurses Association (HPNA) Hospice Foundation Improving Palliative Care in the ICU (IPAL) Last Acts National Cancer Institute at the National Institutes of Health National Hospice and Palliative Care Organization (NHPCO) Partnership for Caring Promoting Excellence in End of Life Care

Contact
Sarah Vittone RN MSN MA 424 St. Marys Hall 3700 Reservoir Road Georgetown University 202-687-4679