End of Life Issues in Cancer End of Life Issues in Cancer

CareCare Are We Making Are We Making Progress?Progress?

Sarah Vittone RN, MSN, MASarah Vittone RN, MSN, MAGeorgetown UniversityGeorgetown University

Center for Clinical BioethicsCenter for Clinical Bioethics

Issues for whom?Issues for whom?

PatientsPatients FamiliesFamilies DoctorsDoctors NursesNurses InsuranceInsurance FacilitiesFacilities

Are we making Are we making progress?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 Are we making progress?progress?How do doctor’s know?How do doctor’s know?Although doctors may be able to estimate the Although doctors may be able to estimate the amount of time someone will continue to live amount of time someone will continue to live based on what they know about that person, based on what they know about that person, they might be hesitant to do so. They may be they might be hesitant to do so. They may be concerned about over- or under-estimating the concerned about over- or under-estimating the person’s remaining life span. They also might be person’s remaining life span. They also might be fearful of giving false hope or destroying a fearful of giving false hope or destroying a person's will to live.person's will to live.

Cancer.gov (NCI factsheet)Cancer.gov (NCI factsheet)

Are we making Are we making progress?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)Dartmouthatlas.org (2010)

Are we making Are we making progress?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 The following clinical situations were recently identified as creating the highest recently identified as creating the highest degree of moral distress for critical care degree of moral distress for critical care nursesnurses

1. Continuing to participate in care for 1. Continuing to participate in care for hopelessly ill person who is being hopelessly ill person who is being sustained on a ventilator, when no one sustained on a ventilator, when no one will make a decision to will make a decision to ““pull the plugpull the plug””

2. Following a family2. Following a family’’s wishes to s wishes to continue life support even though it is continue life support even though it is not in the best interest of the patientnot in the best interest of the patient

3. Initiating extensive life-saving actions 3. Initiating extensive life-saving actions when I think it only prolongs deathwhen I think it only prolongs death

4. Following the family4. Following the family’’s wishes for the s wishes for the patientpatient’’s care when I do not agree s care when I do not agree with them but do so because the with them but do so because the hospital administration fears a hospital administration fears a lawsuitlawsuit

5. Carrying out the physician5. Carrying out the physician’’s orders s orders for unnecessary tests and treatments for unnecessary tests and treatments for terminally ill patientsfor terminally ill patients [Elpern, E.H., [Elpern, E.H., Covert, B. & Cleinpell, R. (November 2005). Moral distress Covert, B. & Cleinpell, R. (November 2005). Moral distress of staff nurses in a medical intensive care unit. of staff nurses in a medical intensive care unit. American American Journal of Critical Care, 14Journal of Critical Care, 14(6), 523-530.](6), 523-530.]

Letting GoLetting GoWhat should medicine do when it canWhat should medicine do when it can’’t save your t save your life?life?by by Atul Gawande

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

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

(2009) (2009) DIRECTED BY JAVIER RECIO GRACIA DIRECTED BY JAVIER RECIO GRACIA

Learning objectivesLearning objectives

Compare and contrast four paradigms for Compare and contrast four paradigms for death and dyingdeath and dying

Relate how personal, professional, and Relate how personal, professional, and societal beliefs concerning human life, societal beliefs concerning human life, dying and death influence the outcomes of dying and death influence the outcomes of health care decision making health care decision making for the for the seriously ill and dyingseriously ill and dying

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

Reflection QuestionsReflection Questions

1.1. What does it mean to be finite--to be creature? What does it mean to be finite--to be creature? Are there ways in which our efforts to control and Are there ways in which our efforts to control and master nature work against our innate dignity as master nature work against our innate dignity as humans? humans?

2. What does good care at the end-of-life 2. What does good care at the end-of-life ““look like?look like?”” How can family and professional care givers How can family and professional care givers respond to the holistic needs of dying persons? respond to the holistic needs of dying persons? What does it mean to be a healing presence for the What does it mean to be a healing presence for the dying and their families?dying and their families?

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

3. Do persons have the right to choose the time 3. Do persons have the right to choose the time and manner of their dying? If you grant this and manner of their dying? If you grant this right, are health care professionals and right, are health care professionals and institutions obligated to meet all the requests institutions obligated to meet all the requests patients make, so long as they are requests for patients make, so long as they are requests for legal interventions. Does the public legal interventions. Does the public (taxpayers) have an obligation to fund the (taxpayers) have an obligation to fund the services you desire?services you desire?

4. Is reasonable to assume that once we grant 4. Is reasonable to assume that once we grant the right to die this may evolve into a duty for the right to die this may evolve into a duty for some to die so that the resources they are some to die so that the resources they are consuming may be better allocated? Should consuming may be better allocated? Should government or some other body be granted government or some other body be granted the authority to determine who lives and who the authority to determine who lives and who dies?dies?

5. In what concrete ways do individual beliefs, 5. In what concrete ways do individual beliefs, values and faith commitments influence our values and faith commitments influence our response to the above questions?response to the above questions?

Death and Dying in the Death and Dying in the U.S. Four ParadigmsU.S. Four Paradigms

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

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

Hospice/Palliative Care Hospice/Palliative Care Death on DemandDeath on Demand

The broader context:The broader context:trends in how & where we die, past & trends in how & where we die, past & presentpresent

At centuryAt century’’s turn: s turn: at home: a at home: a

family, family, communal, communal, religious (non-religious (non-medical) eventmedical) event

of accidents, of accidents, infectious infectious diseasedisease

By the 1970s: By the 1970s: of heart disease, of heart disease,

cancercancer, stroke , stroke an institutional, an institutional,

professional, & professional, & technological technological process -- in process -- in hospitals, i.e., hospitals, i.e., the the medicalizationmedicalization of of dyingdying

Assumptions Underlying Assumptions Underlying Approaches to Death & Approaches to Death & DyingDying Life: No longer a "mystery" to be Life: No longer a "mystery" to be

contemplated but a "problem" to contemplated but a "problem" to be solvedbe solved

Importance of control/masteryImportance of control/mastery Absolutization of autonomyAbsolutization of autonomy

State of the ScienceState of the ScienceHow People Die in the How People Die in the U.S.U.S.

SUPPORT STUDY-1995SUPPORT STUDY-1995

Half of conscious patients had moderate to Half of conscious patients had moderate to severe pain at least ½ of time before severe pain at least ½ of time before deathdeath

31% of patients did not wish to have CPR 31% of patients did not wish to have CPR … … BUT BUT physicians of more than half were physicians of more than half were NOT aware of DNR order preferenceNOT aware of DNR order preference

Nearly half of DNR orders were written Nearly half of DNR orders were written within 2 days of patient deathwithin 2 days of patient death

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

SUPPORT STUDYSUPPORT STUDY

Poor symptom (e.g., pain) Poor symptom (e.g., pain) managementmanagement

Inconsistent with patient Inconsistent with patient preferences & valuespreferences & values

Problematic communication & Problematic communication & decision makingdecision making

Life-prolonging, intensive Life-prolonging, intensive treatments vs. palliative/hospice treatments vs. palliative/hospice carecare

TENOTENO STUDY-2004STUDY-2004

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

One in two patients did not receive enough One in two patients did not receive enough emotional support. This was 1.3 times more emotional support. This was 1.3 times more likely to be the case in an institution.likely to be the case in an institution.

One in four respondents expressed concern over One in four respondents expressed concern over physician communication and treatment options.physician communication and treatment options.

Twenty-one percent complained that Twenty-one percent complained that the dying person was not always the dying person was not always treated with respect. Compared treated with respect. Compared with a home setting this was 2.6 with a home setting this was 2.6 times higher in a nursing home and times higher in a nursing home and 3 times higher in a hospital.3 times higher in a hospital.

One in three respondents said One in three respondents said family members did not receive family members did not receive enough emotional support. This was enough emotional support. This was about 1.5 times more likely to be about 1.5 times more likely to be the case in a nursing home or the case in a nursing home or hospital than at home.hospital than at home.

Finally, national Finally, national standards/guidelinesstandards/guidelines

National Consensus Project for National Consensus Project for Quality Palliative Care (2004). Quality Palliative Care (2004). Clinical Clinical practice guidelines for quality practice guidelines for quality palliative care (2009). palliative care (2009). http: ://www.nationalconsensusproject.org

Promoting Excellence: Seven End-of-Promoting Excellence: Seven End-of-Life Care Domains (RWJ)Life Care Domains (RWJ)

National Quality ForumNational Quality Forum

Systemic Barriers to Systemic Barriers to Appropriate End-of-Life Appropriate End-of-Life CareCare Lack of training for physicians, nurses, Lack of training for physicians, nurses,

and other health professionals in and other health professionals in techniques of palliative care, including techniques of palliative care, including pain and symptom management (EPEC, pain and symptom management (EPEC, ELNEC)ELNEC)

Antiquated regulations that constrain Antiquated regulations that constrain the prescribing of narcotic pain the prescribing of narcotic pain medicationsmedications

Misaligned incentives in health Misaligned incentives in health insurance benefits at the end-of-lifeinsurance benefits at the end-of-life

The cultural baggage of a death-denying The cultural baggage of a death-denying cultureculture

Critical milestones, Critical milestones, ethical ethical & legal& legal

Hippocrates Hippocrates on the limits of medicine & on the limits of medicine & the integrity of professional clinical the integrity of professional clinical judgmentjudgment

Dame Cicely Saunders Dame Cicely Saunders founds St. Christophefounds St. Christopherr ’’s Hospice,s Hospice, 1967, 1967, whilewhile Luis Kutner Luis Kutner proposes proposes creation of living willscreation of living wills

Elizabeth Kubler-RossElizabeth Kubler-Ross’’ss On Death and Dying: On Death and Dying: What the Dying Have to Teach Doctors, What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own FamiliesNurses, Clergy, and Their Own Families, , 19691969

First hospice in the U.S.,First hospice in the U.S., 19741974

Critical milestones, Critical milestones, ethical & ethical & legallegal

In re Quinlan, 1976In re Quinlan, 1976 AMA policy: withdrawal of life support to permit AMA policy: withdrawal of life support to permit

death = euthanasia = murderdeath = euthanasia = murder right to privacy right to privacy health care (Rx) decisions … State health care (Rx) decisions … State’’s s

interest in preserving life weakens & individualinterest in preserving life weakens & individual’’s right to s right to privacy grows as medical interventions become more privacy grows as medical interventions become more invasive & prognosis for recovery diminishes ... personinvasive & prognosis for recovery diminishes ... person’’s s right to privacy can be asserted by a guardian when the right to privacy can be asserted by a guardian when the person is incompetentperson is incompetent

1976 Natural Death Act passed by California1976 Natural Death Act passed by California First state statute recognizing living willsFirst state statute recognizing living wills

Critical milestones, Critical milestones, ethical & ethical & legallegal

Cruzan v. Director, Missouri Dept of Health, Cruzan v. Director, Missouri Dept of Health, 19901990 11stst Supreme Court decision to recognize right of Supreme Court decision to recognize right of

dying patients to refuse treatment … states can, but dying patients to refuse treatment … states can, but need not require clear & convincing evidence of need not require clear & convincing evidence of patientpatient’’s wishes before support can be withdrawns wishes before support can be withdrawn

Also in 1990Also in 1990: Jack Kevorkian assists in death of : Jack Kevorkian assists in death of Janet AdkinsJanet Adkins

Patient Self Determination Act, 1991Patient Self Determination Act, 1991 Federally funded health care facilities MUST inform Federally funded health care facilities MUST inform

patients of right to execute advance directivespatients of right to execute advance directives

Critical milestones, Critical milestones, ethical ethical & legal& legal

1994: Oregon becomes the first state to pass 1994: Oregon becomes the first state to pass referendum legalizing physician assisted referendum legalizing physician assisted suicide: Washington, the next state, doesnsuicide: Washington, the next state, doesn’’t t follow until 2009. Now also legal in follow until 2009. Now also legal in Montanna.Montanna.

Compassion in Dying v. State of Washington Compassion in Dying v. State of Washington and Quill v. Vaco, 1997and Quill v. Vaco, 1997 Supreme CourtSupreme Court’’s unanimous finding: no s unanimous finding: no

constitutional right to assisted suicide; morally constitutional right to assisted suicide; morally significant distinction betweensignificant distinction betweenrefusing, withholding & withdrawing treatment ANDrefusing, withholding & withdrawing treatment ANDassisted suicide assisted suicide

left the door open to the states left the door open to the states

Decision making in the care of Decision making in the care of seriously or terminally ill seriously or terminally ill patientspatients Established practicesEstablished practices

– Voluntary, informed refusal of treatment by Voluntary, informed refusal of treatment by patients w/ capacitypatients w/ capacity

– Withholding and withdrawing treatment on Withholding and withdrawing treatment on behalf of incapacitated patients on basis of behalf of incapacitated patients on basis of substituted judgment or best interestssubstituted judgment or best interests

– Palliative and hospice carePalliative and hospice care Controversial issuesControversial issues

– Voluntarily stopping eating and drinkingVoluntarily stopping eating and drinking– Palliative sedation (a.k.a. Palliative sedation (a.k.a. ““terminal sedationterminal sedation””))– Assisted suicide and euthanasiaAssisted suicide and euthanasia– Patient/surrogate demands for futile Rx Patient/surrogate demands for futile Rx

The troubled concept of futilityThe troubled concept of futility

Voluntary, informed

refusal

Withholding &

Withdrawing

Palliative & Hospice

Care

Assisted

SuicideEuthanasia

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

Continuum? Application of the clinician’s duty of compassion? Principles of “beneficence” or “non-maleficence”?

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

Patient or surrogate

demands for futile Rx

Fears Associated Fears Associated with Dying and Deathwith Dying and Death

Fear of Losing ControlFear of Losing Control Fear of Not Being Fear of Not Being ““Allowed to DieAllowed to Die””

or of Being Forced to Die Before or of Being Forced to Die Before One is ReadyOne is Ready

Fear of Intractable Pain and Fear of Intractable Pain and Human SufferingHuman Suffering

Fears Associated Fears Associated with Dying and Deathwith Dying and Death

Fear of Becoming Increasingly Fear of Becoming Increasingly DependentDependent

Fear of Loss of Human DignityFear of Loss of Human Dignity Fear of an Endless Succession of Fear of an Endless Succession of

Meaningless Days: I have nothing Meaningless Days: I have nothing to live for..to live for..””

Economic FearsEconomic Fears

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

Aging with DignityAmerican Academy of Hospice and Palliative Medicine (AAHPM)Americans for the Better Care of the Dying (ABCD)American Geriatric SocietyAmerican Psychological AssociationCancer.orgCancercare.orgCenter to Advance Palliative Care (CAPC)Compassion and ChoicesEducation for Physicians on End-of-Life Care (EPEC)End-of-Life Nursing Education Consortium (ELNEC)Growthhouse.org improving care for the dyingHospice and Palliative Nurses Association (HPNA)Hospice FoundationImproving Palliative Care in the ICU (IPAL)Last ActsNational Cancer Institute at the National Institutes of HealthNational Hospice and Palliative Care Organization (NHPCO)Partnership for CaringPromoting Excellence in End of Life Care

ContactContact

Sarah Vittone RN MSN MASarah Vittone RN MSN MA

424 St. Mary’s Hall424 St. Mary’s Hall

3700 Reservoir Road3700 Reservoir Road

Georgetown UniversityGeorgetown University

202-687-4679202-687-4679