Transcript Ethical Case Studies in Hospice and Palliative Care

ETHICAL CASE STUDIES IN HOSPICE AND
PALLIATIVE MEDICINE
MEDICAL ETHICS
• A set of moral principles that apply values and judgments
to the practice of medicine.
• GOAL of this lecture: to strengthen your framework for
successful moral decision-making and conflict resolution in
complex medical situations.
• Cultural basis cannot be completely removed
• Religious/spiritual underpinning may be minimized but
cannot be completely removed either
MEDICAL ETHICS: PERSONAL INPUTS
• Each person has a moral compass
• Religion has a part: Journal of Medical Ethics study (Dr
Seale) reported Physicians who rated themselves as “very
religious” were 4 times less likely to include patients and
families of patients in decision-making regarding care at
end of life.
• Jehovah Witness, Catholic
• Culture has a role: Culture is a multidimensional
phenomenon influencing ethical decisions, subconscious
values and attitudes learned early in life, influence decision
making even despite day to day medical culture’s
homogenizing effects.
ETHICAL CONSENSUS
• “In increasingly pluralistic societies, rapid
changes in technology, institutional
structures…make it more difficult to reach
national consensus on ethical or moral
values”
Jaffe, Emily and Knight, Carol. “Ethical & Legal Dimensions of Treating LifeLimiting Illness” Unipac 6, Third Edition, Hospice and Palliative Care Training for
Physicians.
HIPPOCRATIC OATH: 5TH CENTURY BC
1.
2.
3.
4.
I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take
to witness all the gods, all the goddesses, to keep according to my
ability and my judgment, the following Oath and agreement:
To consider dear to me, as my parents, him who taught me this art; to
live in common with him and, if necessary, to share my goods with him;
To look upon his children as my own brothers, to teach them this art,
without charging a fee; and that by my teaching, I will impart a
knowledge of this art to my own sons, and to my teacher's sons, and to
disciples bound by an indenture and oath according to the medical
laws, and no others.
I will prescribe regimens for the good of my patients according to my
ability and my judgment and never do harm to anyone.
I will not give a lethal drug to anyone if I am asked, nor will I advise
such a plan; and similarly I will not give a woman a pessary to cause an
abortion.
HIPPOCRATIC OATH: 5TH CENTURY BC
5. I will preserve the purity of my life and my arts.
6. I will not cut for stone, even for patients in whom the disease is
manifest; I will leave this operation to be performed by
practitioners, specialists in this art.
7. In every house where I come I will enter only for the good of
my patients, keeping myself far from all intentional ill-doing
and all seduction and especially from the pleasures of love
with women or with men, be they free or slaves.
8. All that may come to my knowledge in the exercise of my
profession or in daily commerce with men, which ought not
to be spread abroad, I will keep secret and will never reveal.
9. If I keep this oath faithfully, may I enjoy my life and practice
my art, respected by all men and in all times; but if I swerve
from it or violate it, may the reverse be my lot.
THE FIELD OF MEDICAL ETHICS
• Endless analysis
• Endless debate
• Black and White vs. GRAY
Many ethical principles are not in themselves really
debatable: EXAMPLE
• Respect for the privacy of the patient
But become problematic in specific circumstances
Many ethical dilemmas occur when two ethical principles
collide
ETHICAL PRINCIPLES IN HOSPICE AND PALLIATIVE
CARE
• Basic ethical principles have changed over time
• Hippocrates guidelines for physician behavior
• AMA code of ethics first published in 1847 to guide
physicians.
• Other cultures have traditions which differ
• Western Civilization: Christian based ethics
• American Society: Emphasis on Individual rights
• Challenge is to find ethical framework that is not heavily
culture specific or based in a specific religion.
• Moral relativism vs. Moral imperialism
ETHICS: FOUR PRINCIPLES
1. Principle of AUTONOMY
American society has placed great weight on the freedom of
choice of the individual. Each patient as a competent adult,
who should be given full information to understand the
situation and the options, may choose his own course of
action.
Does not mean he may choose treatment which is not offered
such as demanding surgery for lung cancer when it is not
recommended.
It is understood that the individual is the only one in his
place, with his knowledge of his life, history, and values.
IMPORTANT DRIVER FOR HOSPICE MOVEMENT
ETHICS: FOUR PRINCIPLES
2. Principle of Beneficence
Doctor is expected to act and advocate in the best interest of
the patient despite any influences to the contrary. Physician
must act to aid acutely injured, strive to cure illness, provide
comfort to dying. Do good, act in the best interest of the
patient.
One of the most important driving principles of ethical
behavior for physicians.
ETHICS: FOUR PRINCIPLES
3. Principle of Non-Maleficence “First do no
harm”
Any action to be taken should be free of potential harm to
the patient. Physician may recommend treatment which has
some risk if the alternative is worse.
Important counter to excesses of beneficence.
Previously felt to limit physician ability to control pain with
sedating or opioid medications.
DOUBLE EFFECT
•
An action that is good in itself that has two
effects—an intended and otherwise not
reasonably attainable good effect, and an
unintended yet foreseen negative effect.
•
One need not always abstain from a good action
that has foreseeable negative effects.
ETHICS: FOUR PRINCIPLES
4. Principle of JUSTICE
Synonymous with FAIRNESS
Fair distribution of scarce resources (distributive justice)
Respect for people’s rights (rights based justice)
Respect for established law (legal justice)
JUSTICE
• Equality is at the heart of justice, but not all.
• People can be treated equally but unjustly.
• Treat equals equally (horizontal equity) but unequals unequally,
in proportion to the relevant inequality (vertical equity)
• Fruit vendor has 2 incidents of apples being stolen.
• Stolen by poor man who is hungry
• Stolen by middle class teens who laughingly throw them at each
other.
• Is a 200 dollar fine or 10 days in jail for theft of low value item
fair? How could we modify it?
• How does the principle of justice come into play in medicine?
CASE OF YOUNG PATIENT WITH EXPENSIVE
MEDICATIONS
Rhonda B. 39 yo woman transferred into our area from Ann
Arbor. She has been prescribed expensive medications for
her idiopathic pulmonary fibrosis and pulmonary
hypertension, but is not able to afford them. She has been in
and out of the U of M hospital 3 times in last 4 months. She
has continuous oxygen and MKPI of 50%. Dyspnea and
cough are disabling. She states that she has been repeatedly
told her prognosis is less than one year, especially if she
continues to be noncompliant with medications. She asks for
hospice admission.
What is the source of conflict here?
What should the hospice doctor do here?
LIMITATIONS TO AUTONOMY
• Parens Patriae
“The state as parent," a common law principle, which authorizes
the state to act as a benevolent parent to protect its citizens who
are impaired and cannot protect themselves. It allows for
government entities, including APS, to initiate both voluntary and
involuntary services for individuals who cannot protect
themselves.
• Police Power
The right to autonomous decision-making must also be weighed
against the State's interest in preserving and protecting life and
property. The principle of police power gives police the authority
to curtail and control certain personal behaviors to protect the
public welfare, as well as individuals. Police may intervene to
protect individuals and the community from physical harm or the
threat of harm, loss of assets and property, and public nuisances.
“GOD SAVE US FROM EXCESSES OF
BENEFICENCE”
Examples of beneficence vs. autonomy
• Acute Paraplegia: often results in depression and even
suicidality at first, but with time the loss is assimilated.
__________________ supports patient through the period of
despondency because it is temporary.
• Do we agree with this and why?
• Chronic vent unit: Patient with nonreversible pulmonary disease
may be kept alive years, even when he repeatedly hints he
wishes to die. Pain and specific symptoms are controlled, but
perceived quality of life is poor. Patient is kept on ventilator for
his own good. ___________________ overrides autonomy.
• Do we agree with this and why?
BENEFICENCE VS. AUTONOMY?
Nursing home setting:
Patient has little awareness of situation, has no ability to find
food, prepare it or bring it to her mouth, but has ability to
swallow.
American current cultural norms insists such person should
be fed by hand or by whatever means so that she be kept
from losing weight. What is the principle at work here?
Do we agree with this?
PRINCIPLE OF HUMAN DIGNITY/VALUE OF LIFE
• Can be used to advocate for procedures that
prolong life even when subjectively
uncomfortable or no consciousness
• Hospice care has a philosophical
underpinning that speaks against the
artificial and uncomfortable measures that
are often recommended for the purpose of
extending life.
TUBE FEEDING/PARENTERAL NUTRITION
• Often advised during treatment of curable
illness or early in treatment phase for
noncurable illness.
• When return to better quality of life or
substantial prolongation of life is expected.
• Prolongs survival for some patients with
neurological degenerative diseases such as
Alzheimers, ALS, MS.
• Becomes ethical dilemma later in course of
disease
PRINCIPLE OF HONESTY/TRUTH TELLING
Contemporary American culture puts premium on this also.
Patient must be informed of his diagnosis and prognosis
unless he specifically requests not to be told.
Discussion should be in appropriate language, appropriate
timing and allow appropriate time to consider if choices are
to be made.
Patient may designate a surrogate who will be given full
information for decision making purposes.
If the patient is not capable of making decisions a person
may be designated to do so, may be a family member or legal
guardian.
LEGAL TERMS
• Mental capacity: =Competence but a less global term to
refer to specific skills or abilities that a person possesses.
• Consent: when a person is given full information about
choices and is free to choose, he may chose to follow/agree
with a proposal from another person.
• Compliance: a term indicating following the direction of
another (following doctors orders)
• Undue influence: when a person in a stronger position uses
influence to get a weaker person to agree to something
they ordinarily would not want to do
• Duress: coercive undue influence using threat of harm
CASE 1
• 89 yo wm with h/o hospitalization for pneumonia and
COPD living in house he had built with adult son.
Immediately upon admission altercations and
disagreements drove the patient to ER 3 times in one week.
Pt’s son threatened to harm pt and pt brandished barbecue
fork at hospice homemaker. Both son and patient seemed
to be at fault. Son is an unemployed engineer, who appears
to have some mental illness and substance abuse.
• Admitted to hospital due to breakdown in caregiver
relations, pt was polite, kind, and gentlemanly, but did
show mild deficit in short term memory. Hospital applied
for a legal guardian and one was appointed to make
decisions for the patient. Patient wished to return to his
home.
CASE 1
Released again into the son’s care, patient returned home,
where the two continued to feud. Over the next four weeks
RN finds pt not fed or properly clothed, no food in the home,
and fecal soiling in living room. Patient appears drugged and
is rapidly losing weight. Son states pt cannot be trusted and
might harm him in the night. He is putting haldol in patient’s
drinks.
What should the hospice team do?
Guardian is notified that the son is not providing proper care
for patient and against the wishes of both, pt is moved to
assisted living facility.
CASE 1: OUTCOME
In assisted living, patient no longer requires sedative
medications, weight stabilizes, but he continues to be
wheelchair bound and forgetful. Despite his medical
stabilization, he appears depressed. He often states his wish
to go home to live in his own house again. When strength
allows he packs his bags in hopes of leaving, and is
disappointed when he is not allowed to go home. Son also
asks repeatedly for father to return home. Guardian and
hospice staff hold fast to the decision to keep him in AL.
Pt’s doctor says, “We added a reel to his life, but it’s a reel of
blank tape.”
CASE 1: CONCLUSION
• Ethical issues: principle of beneficence vs. autonomy
• Autonomy was overshadowed because patient was truly
incompetent to make decisions.
• Legal guardian followed the wishes of the patient to allow
him to return home from hospital to his son’s care where it
was demonstrated to be unsuitable, but did not allow him
to go back a second time.
TERMS
Guardian
MDPOA
Competent
Capacity
Further reading: Michigan Guardianship and Conservatorship
Handbook.
PRACTICAL QUESTIONS:
• WHAT IS A PATIENT ADVOCATE DESIGNATION?
• A patient advocate designation is a voluntary, private
agreement by which an individual of sound mind chooses
another individual to make care, custody, and medical
treatment decisions for the individual making the
designation. (MDPOA)
• The document must be signed and witnessed to be legally
binding. The individual can revoke the agreement at any
time. The document is not filed with the court; the court is
not involved unless a dispute arises.
PRACTICAL QUESTIONS:
What can a nonfamily legal guardian decide for patient?
Where to live. (location of treatment)
How to spend money.
What they may not legally decide:
To refuse medical treatment
To stop life sustaining medical treatments
Can a family member MDPOA or next of kin make decisions
re withdrawal or refusal of care? YES in most cases if pt is
terminal or on Medicaid.
PRACTICAL QUESTIONS:
• HOW DOES A GUARDIAN DIFFER FROM A
CONSERVATOR?
• A conservator is appointed by the court to handle
investments and other assets of an individual who cannot
effectively manage them. Unlike a guardian, a conservator
does not have the right to make medical decisions or
determine where the individual lives.
• An individual can have both a guardian and a conservator,
the same or different persons.
THE ETHICS COMMITTEE
• Every day decisions involve ethics and people naturally use
their own ethical framework to solve them. Only 5% of less
of the time are decisions more thorny and more difficult.
• The Ethics Committee: A Resource for difficult situations
• Question is not “Should we do what is right or what is
wrong?”, but “Which of these choices is the better good?”
• Actually often cases referred to an ethics committee are not
really ethical disagreements but failures of communication.
• Part of the role of the committee is conflict resolution.
• May informally discuss with committee member also.
THE ETHICS COMMITTEE
• Education
• Policy setting and review
• Case Review: Not decision makers, but
advisors, assisting decision makers
THE ETHICS COMMITTEE
• Identifies and analyzes the nature of
the value uncertainty
• Facilitating the building of consensus
• On either the substantive morally
optimal solution
• Or who should be allowed to make the
decision
THE ETHICS COMMITTEE
• Can help to Mediate, absolve and resolve
• In general they don’t draw on either substantive or
procedural protocols, they wing it
• Try to find missing pieces, pick up the pieces, and
make peace among opposing sides
• Reinterpret
• Try to convert moral distress into moral insight
CASE 2
• Pt is a 49 yo wf with end stage alcoholism. At age 23 she
suffered a head injury in a car accident, and her friend
states that is what made her impulsive and impaired her
judgment. The friend tells of a sad life of poor choices,
chronic depression, and many losses. Now she has
intermittent symptoms of hepatic encephalopathy and was
recently hospitalized with GI bleeding and hepatorenal
syndrome. Pt was sent home from the hospital to the care
of her 20 year old developmentally delayed son and a close
friend who stops in daily. The friend is MDPOA. The
patient is very debilitated and weak. She is mostly
bedbound, up only to bedside commode. At initial
evaluation, it appears patient is ‘preactive’ with a prognosis
of days to weeks. Son does giver her alcohol to drink daily
as desired.
CASE 2
• Physician (but not other hospice staff) questioned the
ethics of allowing a mentally impaired family member to
be the primary caregiver and give her alcohol. Is this the
equivalent of assisted suicide?
• Pt has not ever been able to quit drinking, has no interest
in abstinence or rehabilitation.
• She has no other diagnosis than alcoholism for which there
is available treatment which might prolong her life.
• What should the hospice physician do?
CASE 2
• Hospice physician calls on Ethics committee. Ethics
committee convened to evaluate the case and make a
recommendation to the hospice.
• Review of case per Ethic committee took less than 3 days
to obtain.
CASE 2: ETHICS COMMITTEE FINDINGS
Is it ethical to assist such a family and patient by providing
hospice care (with no other terminal disease than
alcoholism) or whether we ought to limit our involvement to
advising the family to stop assisting the patient in drinking
alcohol, and recommend alcohol treatment? The committee
identifies end-stage alcoholism as appropriate and eligible
life-limiting illness for hospice care. Evidence of functional,
physical and behavioral decline are consistent with
eligibility. Clinical Issue: Ensure Eligibility.
• The team’s responsibility is to educate the patient/family
about their options for care, not to give advice regarding
their choices. Clinical Issue: Provide Education. Ethical
Principle: Respect Autonomy.
CASE 2: ETHICS COMMITTEE FINDINGS
2. We might say it is the choice of the adult patient to die of
alcoholism, but is that a competent choice when they are
inside the addiction? • The committee believes that being
alcoholic and being competent are not mutually exclusive.
Competent people are allowed to make bad decisions.
• Ethical Principle: Respect Autonomy.
CASE 2: ETHICS COMMITTEE FINDINGS
• Is it OK for the family to hand the patient
alcohol to drink, is it different or the same
as to wheel them in a wheelchair to the top
of a cliff? • The family’s behavior is not the
business of hospice. The hospice team’s role
is not to judge the actions of patients or
families.
• Ethical Principle: Respect Autonomy.
CASE 2: ETHICS COMMITTEE FINDINGS
Is the answer dependent on whether they
have previously tried and failed in rehab? •
No. If the patient is competent and aware that
rehab is an option now and does not choose
it, their history is not relevant. We have to
respect that people do the best they can,
given what they have in life.
Ethical Principle: Respect Autonomy
CASE 2: CONCLUSION
• The Ethics Committee feels that patient autonomy is a
primary ethical principle upon which hospice care is
founded, and in this case overrides the paternalistic
impulse of the principle of Beneficence which might justify
the idea that patient should be forced to pursue rehab
treatment against her wishes.
• Hospice doctor is only slightly more comfortable with
proceeding, but is not so moved as to reassign the case.
• Patient was allowed to be cared for at home with extensive
hospice support. She did die peacefully at home within 3
weeks.
CASE 3: EVER OR NEVER COMPETENT?
CeCe is a 37 yo woman whose difficulties with the medical
world started at age 5 when she developed precocious
puberty. She was taken from one hospital to another for
rounds of tests and treatments, no one ever discovering the
cause of her unusual situation. Her mother had a history of
substance abuse and emotional instability which in
retrospect clearly played a large role in the serious
emotional instability that developed in the patient.
At 12 she ran away and was later found to be a prostitute in
New York City. Her history of substance abuse, victimization,
and medical noncompliance became lengthy. At age 25 she
began using prescription methadone rather than illicit drugs
and alcohol. She had two children and a divorce, had violent
altercations with her two daughters leading to restraining
orders against at least once each.
CASE 3
Patient developed colonic obstructing adenocarcinoma at
age 35 and had a partial colectomy. No evidence of
metastatic disease, but she neglected her follow up
appointments. After the surgery she developed
enterovaginal and entero vesicular fistulae which caused
chronic discomfort, vaginal seepage of liquid feces, and
chronic urinary tract infections.
Despite the discomfort, she did not follow up with plans for
treatment due to fear and distrust of the medical system.
At this point she was chronically depressed, living alone,
unable to support herself. Had minimal family support,
methadone habit.
CASE 3
In December 2010 she went to ER due to shortness of breath
and was found to have some pulmonary infiltrates which
could be infection, but were said to be suspicious for
metastatic cancer. With her h/o colon cancer, poor quality of
life, and dislike of procedures, she refused the biopsy and
referred herself to hospice with presumptive diagnosis of
metastatic colon cancer.
She certainly did need help. The majority of her problems
were not fixable. She was certainly uncomfortable.
WHAT SHOULD THE HOSPICE DOCTOR DO NOW?
CASE 3
Pt was on hospice two months without
significant change in her status when a repeat
CT scan was obtained. No evidence of the
prior infiltrates found.
WHAT SHOULD THE HOSPICE DOCTOR DO
NOW?
CASE 3
Pt was re-assigned to a local primary care doctor
and discharged from hospice care.
With much difficulty for the hospice staff.
Three months later she called again. She had been in
ER again and had pneumonia. Could she be
readmitted to hospice care? No.
The hospice team felt very sorry not to be able to
help her.
All the time we had known her, she was chronically
unhappy, did not want any more medical
intervention for any reason, and was whole
heartedly in favor of DNR.
CASE 3
October 2011: Patient herself called from hospital and
stated she had been in ICU and wanted to be released to
hospice care.
After evaluation of the situation it was found that she had
been admitted in an obtunded state suffering from new acute
leukemia. Her daughters had agreed to a rapid induction
chemotherapeutic regimen which was now in day 3.
Patient called again saying that she was bleeding from her
mouth and nose and did not want to be in hospital any more.
Asked for hospice admission instead! She said the oncologist
there would not allow her to leave and was going to get a
psychiatric consultant to declare her incompetent.
CASE 3
• Patient has a terminal disease
• Patient has requested to stop treatment due to long
standing fear of the medical system, and pre-existing poor
quality of life leading to desiring no life prolonging
measures.
• Patient had a history of victimization, of poor choices and
poor judgment.
• Hospice physician called oncologist who said that the
patient had suddenly gone out of her mind and it was
inconceivable to stop the chemotherapy now, tantamount
to suicide. He stated that he would not certify her for
hospice care and was going to have her declared
incompetent immediately to halt her from going to hospice.
• WHAT SHOULD THE HOSPICE DOCTOR DO NOW?
CASE 3
Friday afternoon a psychiatric consultant came to see her.
She refused to speak to him. He wrote orders to transfer her
to the locked psychiatric ward by force if necessary.
Over the weekend she was kept in the locked ward.
Monday morning the oncologist spoke to the patient and she
agreed to go back on chemotherapy. She was transferred out
of the locked ward.
Chemotherapy was continued.
The hospital planned to pursue appointment of a legal
guardian.
CONCLUSION
Patient died in ICU in hospital having spent the last 4 weeks
of her life in hospital.
What ethical issues were at work here?
What were the conflicting principles?
MEDICAL ETHICS IN HOSPICE AND PALLIATIVE
MEDICINE
Complex thorny dilemmas cannot be reduced to simplistic
formula answers.
With many competing claims and values solutions are not
always clean and easy
Respect and Communication are key
The process can be positive/satisfying to all involved even if
the result is not what a particular individual would have
chosen.