Ethical Palliative Care
and End of Life Issues
A. Reed Thompson, M.D.
Palliative Care Program
University of Arkansas for Medical Sciences
Central Arkansas Veterans Healthcare System
Objectives

To present the major ethical concerns
in Palliative Care

To help define the ethical issues in
Palliative Care using case studies
Are Palliative Care
and Hospice Care Different?
Defining Palliative Care
Veterans Healthcare System 2004
Palliative Care is a broad term that includes
hospice care as well as other care that
emphasizes symptom management in persons
with life-limiting disease but is not restricted to
persons near the end of life.
More on Defining Palliative Care
A new specialty of medicine that uses an
interdisciplinary team to manage patients with
an advanced illness, in whom the goal of care is
symptom control rather than disease control.
More on Defining Palliative Care
The care of patients who are in an
advanced stage of an incurable illness.
Hospice Care
Definition
A philosophy of medical care that emphasizes
symptom management in persons with lifelimiting disease and with a primary focus on
quality of life.
Hospice
Definition
Hospice is a interdisciplinary program of
palliative and supportive services funded by
third-party payers that is provided both in the
home and in institutional settings for persons
with weeks or months to live so that they may
live as fully and as comfortably as possible.
Dichotomy
Division into two mutually exclusive,
opposed, or contradictory groups
Dictionary.com
A False Dichotomy
That palliative care and hospice are
fundamentally different
Palliative Care & Hospice Care:
What do they share?




Philosophy of care
Interdisciplinary Team
The honoring of patient preferences
Focus on symptom control rather than
disease control
Palliative Care & Hospice Care:
What do they share?




Clinical expertise in symptom control
Addressing of multiple domains of suffering
Bereavement care
Provided in institutional and home settings
Palliative Care & Hospice Care:
What don’t they share?
Payment mechanism
Palliative Care & Curative Care
Another False Dichotomy?
That Palliative Care and Curative Care
are fundamentally different
Palliative Care & Curative Care
Really a dichotomy?
Cannot separate disease control
and symptom control
Palliative Care & Curative Care
A True Dichotomy
Palliative Care & Curative Care are
fundamentally different
Dichotomy
Division into two mutually exclusive,
opposed, or contradictory groups
Dictionary.com
Palliative Care & Curative Care
Why a dichotomy?
Primary goal of care is different
Questions/Comments?
Ethical Issues in Palliative Care
Ethics
The discipline dealing with what is good and bad
and with moral duty and obligation
Webster’s Online Dictionary
Medical Ethics
A system of moral principles that apply values
and judgments to the practice of medicine.
As a discipline, medical ethics encompasses its
practical application in clinical settings.
Wikipedia.com
Morals
(from the Latin “moralitas” - manner, character, proper behavior
Morality is the differentiation among intentions,
decisions, and actions between those that
are good (or right) and bad (or wrong).
Webster’s Online Dictionary
Ethical Issues in Palliative Care
Autonomy/Beneficence
 Advance directives/surrogacy
 DNR/POLST
 Withdrawing/withholding life support
 Double effect

Ethical Issues in Palliative Care
Medical futility
 Informed consent
 Responsible resource allocation
 Euthanasia/Physician Assisted Suicide
 Truth-telling

Ethical Issues in Palliative Care
Honoring patient preferences
 Non-abandonment
 Sedation for intractable symptoms
 Competency/decisional capacity

Competency vs Capacity

Competency

Decided by a court/judge
 Typically chronic alteration
 Expected to permanent
Capacity (decision-making capacity)
 Decided by physicians
 Typically acute in onset
 Fluctuates

Arkansas Rights of the Terminally Ill or
Permanently Unconscious Act
(ARTIPUA)





Arkansas Act § 20-17-201 (1987)
Addresses patients only in one of these two
conditions
Living Will
Healthcare proxy is appointed
Two physicians are required to declare that the
patient does not have decision-making capacity
Durable Power of Attorney
for Health Care



Arkansas Act § 20-13-104 (1999)
May appoint a durable power of attorney
for health care in addition to a health care
proxy
Durable power of attorney for health care
can all make decisions except those covered
by ARTIPUA
P.O.L.S.T.





Physician orders for life-sustaining treatment
An type of advance directive signed by patient
and physician
Travels with the patient across healthcare venues
Helps prevent unwanted medical interventions,
such as CPR
Arkansas does not have P.O.L.S.T., but over 30
states have adopted some form of it
Organizational Ethics
Definition
The ethics of an organization, and how an
organization ethically responds to an internal or
external stimulus.
Organizational Ethics
Components




Written code of ethics and standards
Ethics training to executives, managers, and
employees
Availability for advice on ethical situations
Systems for confidential reportings
Questions/Comments so far?
Approaches to Problem Solving
Problem solving approaches

Utilitarian - consequentalist

Deontological - intentionalist
Approaches to care of patients
with advanced illness

Hubristic:
Traditional medicine

Nihilistic:
Hospice

Hegelian:
Palliative Care
Thesis
Synthesis
Antithesis
Adapted from Amos Bailey, M.D. Birmingham VA
Break Time
TEST
Ethics in Hospice/Palliative Care
Objective
To help apply knowledge of ethics in
your hospice/palliative care practice
1. All the following statements about ethical
issues related to hospice and palliative care are
true except which one?
a.
b.
c.
d.
Increasing religious and cultural diversity
requires careful attention to the values, needs,
and concerns of each patient.
When news of a life-limiting illness affects a
patient’s ability to make decisions, the
physician should help the patient articulate his
or her beliefs, values, and goals.
Physicians are obligated to honestly and
compassionately tell patients as much as they
want to know about their diagnosis and
prognosis.
Patients are obligated to participate in
research projects that may improve hospice
and palliative care for others.
1. All the following statements about ethical
issues related to hospice and palliative care are
true except which one?
a.
b.
c.
d.
Increasing religious and cultural diversity
requires careful attention to the values, needs,
and concerns of each patient.
When news of a life-limiting illness affects a
patient’s ability to make decisions, the
physician should help the patient articulate his
or her beliefs, values, and goals.
Physicians are obligated to honestly and
compassionately tell patients as much as they
want to know about their diagnosis and
prognosis.
Patients are obligated to participate in
research projects that may improve hospice
and palliative care for others.
2.
Which of the following is not considered an ethical principle
used to guide patient care in hospice and palliative
medicine?
a.
Serving the patient’s well-being
b.
Sound financial choices
c.
Avoiding harm
d.
Fairness and justice
2.
Which of the following is not considered an ethical principle
used to guide patient care in hospice and palliative
medicine?
a.
Serving the patient’s well-being
b.
Sound financial choices
c.
Avoiding harm
d.
Fairness and justice
3.
Which one of the following statements is true?
a.
A formal decision-making process guarantees that an
ethically correct decision will be made.
b.
The principles of beneficence, nonmaleficence,
autonomy, and justice provide clear-cut guidelines for
making ethical decisions.
A principle-based framework provides guidance about the
ranking of principles when they appear to conflict with one
another.
Ethical principles are general values that point to relevant
considerations, such as patient self-determination.
c.
d.
3.
Which one of the following statements is true?
a.
A formal decision-making process guarantees that an
ethically correct decision will be made.
b.
The principles of beneficence, nonmaleficence,
autonomy, and justice provide clear-cut guidelines for
making ethical decisions.
A principle-based framework provides guidance about the
ranking of principles when they appear to conflict with one
another.
Ethical principles are general values that point to relevant
considerations, such as patient self-determination.
c.
d.
4.
In the hospice and palliative care setting, which of the
following is an example of the principle of nonmaleficence?
b.
Discussing a patient’s feelings about confronting death with
your neighbor
Providing heavy sedation at the family’s request
c.
Avoiding the prescription of high dosages of opioids
d.
Withdrawing artificial nutrition when a patient is actively
dying with rattling secretions
a.
4.
In the hospice and palliative care setting, which of the
following is an example of the principle of nonmaleficence?
b.
Discussing a patient’s feelings about confronting death with
your neighbor
Providing heavy sedation at the family’s request
c.
Avoiding the prescription of high dosages of opioids
d.
Withdrawing artificial nutrition when a patient is actively
dying with rattling secretions
a.
5.
Whose input is most important when determining a
patient’s decision-making capacity?
a.
The patient’s physician
b.
The administrative law judge
c.
The patient’s psychiatrist (in conjunction with the
patient’s spouse)
d.
The patient’s attorney
5.
Whose input is most important when determining a
patient’s decision-making capacity?
a.
The patient’s physician
b.
The administrative law judge
c.
The patient’s psychiatrist (in conjunction with the
patient’s spouse)
d.
The patient’s attorney
6.
Which of the following conditions must be met before a
patient is considered not to have capacity to make
healthcare decisions?
a.
A judge rendered a finding of incompetency.
b.
The patient cannot recite the information presented.
c.
The patient does not have the ability to understand the
implications of a decision.
d.
The patient does not have the verbal ability to
communicate a decision.
6.
Which of the following conditions must be met before a
patient is considered not to have capacity to make
healthcare decisions?
a.
A judge rendered a finding of incompetency.
b.
The patient cannot recite the information presented.
c.
The patient does not have the ability to understand the
implications of a decision.
d.
The patient does not have the verbal ability to
communicate a decision.
7.
If a physician is morally opposed to a terminally ill patient’s
treatment choice, such as instituting mechanical ventilation
at the very end of life, the physician should do which of the
following?
a.
Help the patient find another physician who is
comfortable implementing the patient’s choice.
b.
Call a meeting of the ethics committee.
c.
Attempt to convince the patient to make a decision the
physician can support.
Refuse to provide futile care for the patient.
d.
7.
If a physician is morally opposed to a terminally ill patient’s
treatment choice, such as instituting mechanical ventilation
at the very end of life, the physician should do which of the
following?
a.
Help the patient find another physician who is
comfortable implementing the patient’s choice.
b.
Call a meeting of the ethics committee.
c.
Attempt to convince the patient to make a decision the
physician can support.
Refuse to provide futile care for the patient.
d.
8.
Which of the following statements is false?
a.
b.
c.
d.
The patient’s relationship with family members should
not be considered when making decisions about
treatments.
A thorough assessment of clinical, biographical, and
cultural facts is the first step in making ethical
decisions.
Proposed treatments should be considered in terms
of their affects on both the patient and the family.
Ethical dilemmas may be nothing more than
disagreements based on inadequate knowledge.
8.
Which of the following statements is false?
a.
b.
c.
d.
The patient’s relationship with family members should
not be considered when making decisions about
treatments.
A thorough assessment of clinical, biographical, and
cultural facts is the first step in making ethical
decisions.
Proposed treatments should be considered in terms
of their affects on both the patient and the family.
Ethical dilemmas may be nothing more than
disagreements based on inadequate knowledge.
9. The patient is a 62-year-old woman with a long history of schizophrenia, who has
lived on the street for 5 years while she was awaiting an opening in a state-supported
apartment building, which she moved into a year and a half ago. The building manager
sent her to the emergency room for an evaluation of a painful, odorous skin lesion on
her chest. She was deemed to have capacity in the ED by 2 physicians (one a
psychiatrist). She refused workup or treatment of a fungating breast lesion, presumed
to be breast cancer, and was referred to hospice. She has no cognitive distortions or
other thought abnormalities. She can logically argue why she wants to only use toilet
paper and napkins to absorb the drainage from her breast and refuses to be given
wound care. The odor distresses other residents. The hospice nurse wants to force
wound care upon her to prevent eviction. At this point, what is the next step in helping
this patient?
a. Debride her wound in her apartment to reduce the odor against her wishes.
b. Commit her to a psychiatric unit.
c.Try to find family to make decisions for her.
d. Allow her to make her own decisions and potentially be evicted.
9. The patient is a 62-year-old woman with a long history of schizophrenia, who has
lived on the street for 5 years while she was awaiting an opening in a state-supported
apartment building, which she moved into a year and a half ago. The building manager
sent her to the emergency room for an evaluation of a painful, odorous skin lesion on
her chest. She was deemed to have capacity in the ED by 2 physicians (one a
psychiatrist). She refused workup or treatment of a fungating breast lesion, presumed
to be breast cancer, and was referred to hospice. She has no cognitive distortions or
other thought abnormalities. She can logically argue why she wants to only use toilet
paper and napkins to absorb the drainage from her breast and refuses to be given
wound care. The odor distresses other residents. The hospice nurse wants to force
wound care upon her to prevent eviction. At this point, what is the next step in helping
this patient?
a. Debride her wound in her apartment to reduce the odor against her wishes.
b. Commit her to a psychiatric unit.
c.Try to find family to make decisions for her.
d. Allow her to make her own decisions and potentially be evicted.
10. Usual palliative care communication with a patient would
include all of the following except
a.
revisiting goals of care after major events
b.
addressing resuscitation and desirability of continuation
of pacemaker, ICD, CRT, and LVAD support
c.
social justice issues of prolonged hospitalization
d.
decision making surrounding disease-altering therapies
such as ICD, CRT, and transplantation
10. Usual palliative care communication with a patient would
include all of the following except
a.
revisiting goals of care after major events
b.
addressing resuscitation and desirability of continuation
of pacemaker, ICD, CRT, and LVAD support
c.
social justice issues of prolonged hospitalization
d.
decision making surrounding disease-altering therapies
such as ICD, CRT, and transplantation
11. A 67-year-old widow has metastatic cervical cancer that is
refractory to chemotherapy. She is "slow," according to her
brother-in-law, who has cared for her since her husband died
six years ago. The brother-in-law has signed medical power
of attorney and insists that she not be informed that the
chemotherapy has been unsuccessful. He asks that mock
treatment be administered to keep up her hope. Which of the
following is the most appropriate next step?
a. Agree to administer mock treatment
b. Ascertain what the patient knows and wants to know about her
condition
c. Consult the hospital attorney and ethics committee
d. Question the validity of his medical power of attorney
11. A 67-year-old widow has metastatic cervical cancer that is
refractory to chemotherapy. She is "slow," according to her
brother-in-law, who has cared for her since her husband died
six years ago. The brother-in-law has signed medical power
of attorney and insists that she not be informed that the
chemotherapy has been unsuccessful. He asks that mock
treatment be administered to keep up her hope. Which of the
following is the most appropriate next step?
a. Agree to administer mock treatment
b. Ascertain what the patient knows and wants to know about her
condition
c. Consult the hospital attorney and ethics committee
d. Question the validity of his medical power of attorney
12. Which of the following issues is often associated
with requests for physician-assisted suicide?
a.
Pain requiring high dosages of morphine
b.
Antidepressant therapy
c.
Fatigue on the part of hospice staff
d.
Feelings of being a burden on family
12. Which of the following issues is often associated
with requests for physician-assisted suicide?
a.
Pain requiring high dosages of morphine
b.
Antidepressant therapy
c.
Fatigue on the part of hospice staff
d.
Feelings of being a burden on family
13. Which of the following is least important when a
patient’s identified surrogate makes healthcare
decisions?
a.
The patient’s advance directive
b.
The surrogate’s financial concerns
c.
The patient’s values and preferences
d.
Coherence with the patients’ other life choices
13. Which of the following is least important when a
patient’s identified surrogate makes healthcare
decisions?
a.
The patient’s advance directive
b.
The surrogate’s financial concerns
c.
The patient’s values and preferences
d.
Coherence with the patients’ other life choices
14. A 58-year-old Asian woman is diagnosed with breast
cancer. The husband asks the nurse to inform him about his
wife’s condition but to withhold the diagnosis from his wife.
The nurse should :
a.
Refuse to provide care for the patient unless allowed to fully disclose
all information to her
b.
Ask the patient what she knows and wants to know about her
condition
c.
Present pertinent information to the patient and family members
concurrently in a family conference
d.
Explain that, in the , information about diagnosis and prognosis is
always fully disclosed to the patient.
14. A 58-year-old Asian woman is diagnosed with breast cancer.
The husband asks the nurse to inform him about his wife’s
condition but to withhold the diagnosis from his wife. The nurse
should :
a.
Refuse to provide care for the patient unless allowed to fully disclose
all information to her
b.
Ask the patient what she knows and wants to know about her
condition
c.
Present pertinent information to the patient and family members
concurrently in a family conference
d.
Explain that, in the , information about diagnosis and prognosis is
always fully disclosed to the patient.
15.
A 63-year-old man with multiple bone metastases from advanced
lung cancer is receiving home hospice care. You find him in
agonizing pain despite having taken 800 mg of morphine
sustained release (SR), 24 mg hydromorphone, and 600 mg
gabapentin. He asks you to “just put me to sleep.” Which of the
following is the most appropriate course of action?
a.
Initiate therapeutic sedation with SC phenobarbitol.
b.
Explain that euthanasia is illegal.
c.
Increase the morphine SR to 1,000 mg twice a day.
d.
Move the patient into the inpatient unit and rotate the opioids.
15.
A 63-year-old man with multiple bone metastases from advanced
lung cancer is receiving home hospice care. You find him in
agonizing pain despite having taken 800 mg of morphine
sustained release (SR), 24 mg hydromorphone, and 600 mg
gabapentin. He asks you to “just put me to sleep.” Which of the
following is the most appropriate course of action?
a.
Initiate therapeutic sedation with SC phenobarbitol.
b.
Explain that euthanasia is illegal.
c.
Increase the morphine SR to 1,000 mg twice a day.
d.
Move the patient into the inpatient unit and rotate the opioids
16. The patient from question 15 experiences some relief
from multiple interventions, but he becomes more
confused and drowsy and still grimaces at times. His
son, who lives out of town, comes to visit and is terribly
distressed. He says that he is the patient’s power of
attorney for health care, and he insists that you “get this
over with.” What is the most appropriate response?
a.
Initiate therapeutic sedation with SC phenobarbitol.
b.
Explain that euthanasia is illegal.
c.
Send in the Chaplain
d.
Assemble a meeting with team members and the
patient’s family to discuss the patient’s goals of care.
16. The patient from question 15 experiences some relief
from multiple interventions, but he becomes more
confused and drowsy and still grimaces at times. His
son, who lives out of town, comes to visit and is terribly
distressed. He says that he is the patient’s power of
attorney for health care, and he insists that you “get this
over with.” What is the most appropriate response?
a.
Initiate therapeutic sedation with SC phenobarbitol.
b.
Explain that euthanasia is illegal.
c.
Send in the Chaplain
d.
Assemble a meeting with team members and the
patient’s family to discuss the patient’s goals of care
17. The patient from question 15 is at home and has had 3 weeks
of excellent pain relief and good mental clarity but develops
brain metastases with frequent seizures and severe agitated
delirium despite multiple medication changes. The son again
asks you to help his father die peacefully. What is the best
response?
a.
Initiate therapeutic sedation with midazolam.
b.
Explain that euthanasia is illegal.
c.
Increase the opioid dosage by 50%.
d.
Ask for a Neurology Consult
17. The patient from question 15 is at home and has had 3 weeks
of excellent pain relief and good mental clarity but develops
brain metastases with frequent seizures and severe agitated
delirium despite multiple medication changes. The son again
asks you to help his father die peacefully. What is the best
response?
a.
Initiate therapeutic sedation with midazolam.
b.
Explain that euthanasia is illegal.
c.
Increase the opioid dosage by 50%.
d.
Ask for a Neurology Consult
18. Which of the following statements is a
misconception about palliative care?
a.
Palliative care interventions usually result in
hastening death.
b.
A central goal of palliative interventions is to
improve a patient’s quality of life.
c.
No specific therapy is excluded from consideration
as a palliative intervention.
d.
Palliative Care, like hospice, is a team effort
18. Which of the following statements is a
misconception about palliative care?
a.
Palliative care interventions usually result in
hastening death.
b.
A central goal of palliative interventions is to
improve a patient’s quality of life.
c.
No specific therapy is excluded from consideration
as a palliative intervention.
d.
Palliative Care, like hospice, is a team effort
19. A patient with widespread adenocarcinoma of the colon with
extensive liver and brain metastases demands an evaluation for
a liver transplant. Which of the following responses is the best
way to express your concern?
a. It would be a waste of precious resources to give this patient a new
liver.
b. The patient’s situation is hopeless and doesn’t deserve a new liver.
c. Liver transplants are medically futile on such patients.
d. The burdens of the surgery outweigh the benefits of the procedure
for this patient.
19. A patient with widespread adenocarcinoma of the colon with
extensive liver and brain metastases demands an evaluation for
a liver transplant. Which of the following responses is the best
way to express your concern?
a. It would be a waste of precious resources to give this patient a new
liver.
b. The patient’s situation is hopeless and doesn’t deserve a new liver.
c. Liver transplants are medically futile on such patients.
d. The burdens of the surgery outweigh the benefits of the procedure
for this patient.
21. A 52-year-old terminally ill man on hospice with unrelieved pain
asks his nurse for a prescription for a 3-month supply of secobarbital.
In addition to calling for help from your team, what is the best
response?
a.
Honor the request
b.
Listen to his concerns and document the conversation carefully.
c.
Get him a prescription for a 1-week supply of secobarbital and advise
the patient to call for refills as needed.
d.
Attempt to determine the cause of the pain and treat it aggressively.
21. A 52-year-old terminally ill man on hospice with unrelieved pain
asks his nurse for a prescription for a 3-month supply of secobarbital.
In addition to calling for help from your team, what is the best
response?
a.
Honor the request
b.
Listen to his concerns and document the conversation carefully.
c.
Get him a prescription for a 1-week supply of secobarbital and advise
the patient to call for refills as needed.
d.
Attempt to determine the cause of the pain and treat it aggressively.
22. Which of the following is the most common
reason that terminally ill patients ask for help in ending
their lives?
a. Depression
b. Fear of loss of control
c. Financial factors
d. Non-pain symptoms
e. Pain
22. Which of the following is the most common
reason that terminally ill patients ask for help in ending
their lives?
a. Depression
b. Fear of loss of control
c. Financial factors
d. Non-pain symptoms
e. Pain
Case of A.T.
A.T. is a 77 y/o man with advanced COPD has been in hospice 180
days. He qualified for hospice care based on Medicare ‘s admission
guidelines, but he has been without any substantial decline. He is
home bound and O2 dependant. He lives alone with friends helping
with his groceries, but they are not too reliable. He is frequently
found without food in the home. He has decisional capacity, and he
refuses to move to assisted living.
Case of A.T.
Is it ethical to discharge A.T.
from hospice ?
Questions/Comments?