Transcript THE END OF LIFE AARTI RAGHU, M.D. “…. death, a necessary end, will come when it will come.” - William Shakespeare.

THE END OF LIFE
AARTI RAGHU, M.D.
“…. death, a necessary end, will come when it
will come.”
- William Shakespeare
What we’re going to talk about..

Issues with End of Life Care
 The numbers
 How are we doing?
 Ethical Issues
 Determining goals of care
- Informed consent
 Advance directives
 Communication
- Housestaff and communication
 Withdrawal of Medical care and Legal Issues
 Euthanasia
 Futility
 Physician withdrawal from patient care
 When a patient dies- impact on physicians
 Websites for patients
Why talk about it?

A century ago, most people with traumatic injuries, serious infections, heart
disease or cancer had little expectation of a long life after diagnosis

Most people expected little more than comfort measures from doctors.

Today, death is often seen as an event that can be deferred indefinitely
rather than as an intrinsic part of life.

Medical procedures commonly extend the lives of people who have such
diseases as heart disease, cancer, stroke, chronic obstructive pulmonary
disease, pneumonia, and dementia, often giving them many years in which
quality of life and function are quite good but not always so.

Talking about the likely outcomes of illness, including death and dying, is an
important part of health care.

Health care providers vary in their comfort levels discussing end of life
issues.

There is a lack of formal education for providers regarding end of life
Societal Attitudes
As a society - we do not accept death. We have deformed the
process of dying.
 Death is a failure
 Death is often taboo
 Mastery over nature
 Legal paranoia
 Palliative care is giving up
 Fear of addiction (drugs)
 Lack of reimbursement for palliative care
 Health care system focuses on and reimburses for acute care
interventions
What are some of the problems
Vanishing line between old age & death
-
-
-
old age is a disease to be
conquered/controlled
live for years with chronic illnesses
biomedicalization of aging has
replaced the cultural understanding
of aging (religion, nature, family)
we can orchestrate & control the
timing of death
The technological imperative
- success reinforces use of technology
- death can be conquered
- goal of medicine - cure
- implicit moral imperative to “do
something”
Gulf between lay & medical worlds
- new frontier
- vast gulf between medical
knowledge & lay
- family members make decisions
based on medical world of aging &
death/ not the patients life
experience
Lack of clarity with treatment goals
- “everything done”
- Goals are not clarified within patient
values & quality of life
“What is needed to bring about
change is something more
fundamental, that is a hard look
at a medical culture in which
doctors have access to
splendid life saving technology
& feel obligated both morally
and legally to use it.”
_
Daniel Callahan
Director, International Program
Co-Founder of The Hastings Center
The Hastings Center is an independent, nonpartisan, and nonprofit bioethics research institute
founded in 1969 to explore fundamental and emerging questions in health care, biotechnology,
and the environment.
New Goals

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Death is expected
Care of the dying is integral to health care
Palliative Care

Active total care which embraces the notion of alleviating and
easing symptoms in lieu of continuing to attempt a “cure”
 Palliative care affirms life and regards dying as a normal
process
 Palliative care is not giving up or losing hope.
 Palliative care is aggressive caring!
 Palliative care is aggressive symptom management
More reasons to talk about it…

In one study, elderly patients with chronic illnesses were
more satisfied with their primary care physicians and
outpatient visits when advanced directives were
discussed. (1)

Apparent severity of chronic illness does not necessarily
predict patient desire for EOL discussions.
One study found that patients at later stages of chronic
lung disease were no more or less interested in such
discussions than patients with earlier stage chronic lung
disease. (2)
Among all the patients studied, 85 percent desired EOL
discussions.
The statistics
% of institutional deaths
(NCHS, CDC 1998 data)

56% in a hospital, clinic, or
medical center;
 19% in a nursing home;
 21% of people died at home. (3)
Almost half of those who die in the
hospital have been cared for in an
intensive care
unit (ICU) within 3 days prior to
their death. (4)
Trends and Patterns in Place of Death,19892000 Jay S. Buechner, PhD
Rhode Island Department of Health, Office of
Health Statistics:Turning numbers into
knowledge Vol. 4, No. 9 September 2002
In the ICUs of tertiary
care centers, the
withdrawal or
withholding of
life support precedes
death in 65% to 90%
of all deaths. (4)

The prevalence of written Advance directives is about 25% and
did not significantly increase after the passage of the Patient
Self Determination Act (5)

End-of-life care consumes 10% to 12% of all health care
expenditures and 27% of Medicare expenditures in the United
States.

In 1999, terminal hospitalizations accounted for 7.5% of all
inpatient costs.

Studies have shown that the amount that might be saved by
reducing the use of aggressive life-sustaining treatment for
dying patients is 3.3% of total national health expenditures. (4)

The incremental cost per QALY of providing rather than withholding ventilator support
and restorative care increase across prognostic strata in terminally ill patients
(SUPPORT study)

The cost was $24,000 per QALY among low-risk patients,
 $44,000 per QALY among medium-risk patients,
 $110,000 per QALY among high-risk patients.

Although treatment of low- and medium-risk patients appeared to be cost-effective,
the incremental cost per QALY for those patients with a less than 50% chance of
surviving at least 2 mo after diagnosis did not compare favorably with other medical
interventions, such as therapy for severe hypertension or coronary artery bypass
surgery.

Schapira and colleagues - fewer than ¼ of cancer patients who were mechanically
ventilated for acute respiratory failure survived the ICU or spent more than 3 mo at
home before dying.
Overall, the cost per year of life gained at home was $95,142 for patients with solid
tumors and $449,544 for patients with hematologic malignancies. (6)

Wachter and coworkers - analysis of patients with the acquired immunodeficiency
syndrome (AIDS) who received mechanical ventilation for severe Pneumocystis
carinii pneumonia (PCP).
The cost of ICU admission of subsequent hospitalization for the 25% of patients who
left the ICU alive averaged $174,787 per year of life saved over the 10 yr of this
study. (7)
End of Life Care- How are we doing?
The study to understand prognoses and preferences for outcomes and risks of
treatments (SUPPORT). JAMA. 1995 Nov 22-29;274(20):1591-8
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OBJECTIVES--To improve end-of-life decision making and reduce the frequency
of a mechanically supported, painful, and prolonged process of dying.
DESIGN--A 2-year prospective observational study (phase I) with 4301 patients
followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their
physicians randomized by specialty group to the intervention group (n = 2652) or
control group (n = 2152).
SETTING--Five teaching hospitals in the United States.
PATIENTS--A total of 9105 adults hospitalized with one or more of nine lifethreatening diagnoses; an overall 6-month mortality rate of 47%.
INTERVENTION--Physicians in the intervention group received estimates of the
likelihood of 6-month survival for every day up to 6 months, outcomes of
cardiopulmonary resuscitation (CPR), and functional disability at 2 months.
A specifically trained nurse had multiple contacts with the patient, family,
physician, and hospital staff to elicit preferences, improve understanding of
outcomes, encourage attention to pain control, and facilitate advance care
planning and patient-physician communication.
RESULTS
The phase I observation documented shortcomings in
communication, frequency of aggressive treatment, and the
characteristics of hospital death:
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only 47% of physicians knew when their patients preferred to
avoid CPR
46% of do-not-resuscitate (DNR) orders were written within
2 days of death
38% of patients who died spent at least 10 days in an
intensive care unit (ICU)
and for 50% of conscious patients who died in the hospital,
family members reported moderate to severe pain at least
half the time
During the phase II intervention, patients experienced no improvement in

patient-physician communication ( 37% of control patients and 40% of
intervention patients discussed CPR preferences)
or in the five targeted outcomes,

ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95%
confidence interval [CI], 0.90 to 1.15),

physicians' knowledge of their patients' preferences not to be resuscitated
(adjusted ratio, 1.22; 95% CI, 0.99 to 1.49),

number of days spent in an ICU, receiving mechanical ventilation, or comatose
before death (adjusted ratio, 0.97; 95% CI, 0.87 to 1.07),

or level of reported pain (adjusted ratio, 1.15; 95% CI, 1.00 to 1.33).
The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05;
95% CI, 0.99 to 1.12).
CONCLUSIONS—
The phase I observation of SUPPORT confirmed substantial shortcomings in care
for seriously ill hospitalized adults.
The phase II intervention failed to improve care or patient outcomes.
Enhancing opportunities for more patient-physician communication, although
advocated as the major method for improving patient outcomes, may be
inadequate to change established practices. To improve the experience of
seriously ill and dying patients, greater individual and societal commitment and
more proactive and forceful measures may be needed.
ETHICAL ISSUES
Autonomy and beneficence
 The principle of autonomy dictates that the patient has the right to choose among
offered therapies and the right to refuse any treatment even though this decision may
result in the patient's death.
 In contrast, the principle of beneficence dictates that medical personnel have the
obligation to help further the patient's own legitimate interests.
 Since preservation of life is a legitimate interest of the patient, the refusal of lifeprolonging therapy creates the potential for conflict.
 Allowing the patient to die can be viewed as a violation of beneficence, while forcing
the patient to undergo heroic supportive measures is a violation of his or her
autonomy.
 In the United States a consensus has been achieved that autonomy takes
precedence over other considerations.
Autonomy and nonmaleficence — Nonmaleficence can be defined simply as not
inflicting evil or harm
 The principle of nonmaleficence requires that persons refrain from providing
interventions, which in their judgment, are likely to be of more harm than benefit.
 Often, patients request interventions which are without benefit and are harmful or
dangerous.
 It can be argued that nonmaleficence is a right of the physician (or other health care
provider) to refuse to participate in practices which are judged to be harmful to the
patient.
Non-abandonment and nonmaleficence — Judgments made regarding the
appropriateness of a specific intervention are not always unanimous
 On the one hand, the physician is obliged to refrain from providing treatments that he
or she feels are inappropriate; on the other, the physician must not abandon the
patient.
 The physician is obliged to help the patient or surrogate understand the issues but, if
this fails and the physician feels it would be morally wrong to continue to be involved
with the care plan, then it is imperative that he or she attempt to find another
physician willing to continue care of the patient in the prescribed manner. The
physician must continue to care for the patient until such a physician is found.
 The patient may refuse other physicians, wanting to continue with the current
physician; this does not mean that the physician is in any way obligated to perform
the disputed intervention.
Disclosure and beneficence — Physicians have an obligation to disclose relevant
medical information to patients and families.
 A few patients (13 percent in one study (8) ) do not want to participate in end-of-life
decisions.
 One survey of critical care physicians found that 14 percent reported that they had
withdrawn care from patients without informing the patient's family. (9)
Fair allocation of societal resources —society does not have unlimited financial
resources to provide the "best possible" health care for all. Duty to an individual
patient and to society as a whole may conflict in cases in which limited resources are
disproportionately consumed by a critically ill individual.
 cost of cardiopulmonary resuscitation alone has been estimated at nearly $500,000
per life saved. End of life care consumes 10 to 12 percent of all healthcare
expenditures and 27 percent of all Medicare expenditures. (10, 11)
Case Scenario
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56 yo male 5 months s/p palliative choledochoenterostomy for
metastatic Ca of the head of the pancreas
>30 lb. weight loss since operation and increasing
weakness/fatigue (esp. last 2 months)
Postprandial vomiting for last 3 weeks
Very large distended stomach with mass obstructing proximal
duodenum - endoscopist unable to stent
Patient asks you to “fix it!”
(When Do We Stop and How Do We Do It? Medical Futility and Withdrawal of Care Daniel B.Hinshaw, M.D.,FACS, Ann Arbor,MI.
www.facs.org/education/congress2002)
Case Scenario – continued
What should you do next?
1) Tell the patient: “ It’s hopeless. There’s nothing more that can
be done.”
2) Place a PEG for gastric decompression.
3) Determine the patient’s understanding of the problem. What
does he mean by “fix it”?
4) Encourage endoscopist to reattempt stenting of the obstructed
segment of duodenum.
5) Institute NG decompression in anticipation of performing a
palliative gastrojejunostomy.
Case Scenario – continued
What is the problem here?
Is it about a series of inadequate treatment options?
It’s really about
•Defining the goals of care (i.e., the patient’s
goals) even before entering the ICU
• Advanced Care Planning
• Communication
Determining the Goals of Care

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
Ask the informed patient. The patient’s goals of care should
always be a central feature of informed consent.
Remember the context. What is realistic under the
circumstances?
Set achievable goals with the patient (eg. reduce vomiting to
once/day and control nausea).
Informed consent

Upto the1970s- medical decisions were made by the physician
without participation from the patient.

This paternalism emphasized beneficence to the exclusion of
other principles, particularly autonomy.

Studies show physicians are not always able to determine what
is in their patients' best interests – their own preferences may
be a bias.(12)

and biases are unavoidable.(13, 14)
By the mid-1980s- emphasis was on patient autonomy due to
 increased valuing of patient autonomy by society at large
 questioning of the assumption of physician beneficence in an era of cost containment
Physicians began to act as impartial agents for their patients who were considered
"clients" with the power to chose any therapy they desired. Even giving advice was
considered exerting an inappropriate influence.
This overemphasis on autonomy still exists in many ways. Patients or family members
are often made to feel that they have to "make the decision" regarding decisions to
resuscitate.
Often poorly informed patients are confronted with an open-ended request to tell the
medical team what "they want to have done." Often their response was to have
"everything done" and this was accepted by the physician as a request for
cardiopulmonary resuscitation when the physician, in fact, thought that this would be
a mistake. In this scenario,
 the physician abandoned his or her traditional responsibility to protect the patient
against inappropriate therapy in favor of complete autonomy.
 This diminished autonomy by depriving patients of expert advice. Therapy was
chosen based on unrealistic beliefs; silence by the physicians interpreted as tacit
approval.
The pendulum has begun to swing back from absolute autonomy toward a more
balanced approach.
 These models have been termed - enhanced autonomy
- the fiduciary role
A model based solely on one principle (such as autonomy) is no better than one based
solely on another (eg, beneficence).
Who gives consent?
The patient is the primary decision maker if he has…..


The ability to communicate
The ability to understand the proposed treatment and alternative interventions
- ask the patient to paraphrase
 The ability to grasp the consequences of accepting and of declining the suggested
treatment
 The ability to reason.
Exceptions…

Depression- preferences are clouded by their mood disorder
- Overriding the wishes of a seemingly capable patient who is
depressed is a serious matter and is one situation in which psychiatric involvement
should be sought.

Cultural issues- in patients who are members of various ethnic groups, decisionmaking is customarily delegated to other family members.
- most patients, at least those who have cancer, want to be informed if their illness is
terminal, while family members' opinions may differ. (15)
- ask patients directly whether they wish to be involved.
Informed Consent- Principles

How much information does the patient require?
Three possible standards by which the adequacy of information provided
may be judged:

The professional community standard: comparisons with other physicians;
established by national professional organizations.

The reasonable person standard: information desired by a well-reasoning
individual who is free of mental or physical illness and no conflicting interests
- subjective, variable factors related to cultural and educational background.

The subjective standard: requires the physician to use experience and
judgment to decide
- information tailored for a specific clinical situation, by the physician, leaves
one open to criticism

Does the patient understand the information? —ask the patient to
summarize what has just been said and to correct as needed.

Is there a conflict of interest? —especially if surrogate decision makers
Informed consent is in place only when adequate information, adequate
understanding, and lack of coercion have been verified.

Incompetent patients (patients lacking decision making capacity) —
patients do not lose their autonomy when they become incompetent
-the medical team and persons who are well acquainted with the patient
attempt to reconstruct the patient's judgment by analyzing prior statements
and his or her overall values and beliefs. This is referred to as "substituted
judgment."

>90 percent of patients prefer that, if incapacitated, family members make
medical decisions for them along with their physicians. (16)
Opinions of the physician —

The renewed emphasis on informed consent has created the temptation for
physicians to shift the decision-making process entirely to patients or their
families.

This is an incorrect approach, because informed consent is a process that
requires the involvement of both the patient and the health care team.

It is not only acceptable but also required for the physician to render an
opinion regarding what he or she believes is the proper course of action.

It is unacceptable for a set of facts to be merely presented to the patient
without additional professional input and advice.

Decisions of this gravity are best made jointly by those who have an in-depth
knowledge of the patient's wishes and philosophy combined with those who
understand the details of the pertinent medical issues.
Case Scenario 2
81 y/o female with advanced, widely metastatic breast cancer
refractory to therapy presents in the ED with progressive SOB
and debility.
A two year old advanced directive exists stating her desire to
“live as long as I have a meaningful quality of life and heroic
measures are acceptable as long as there is a chance of
recovery.”
You would next:

1) Invoke her advanced directive and admit her to a general
care ward for “comfort measures” only.

2) Ask the patient, “if your heart should stop or you are unable
to breathe on your own, would you want us to do everything
possible to get your heart started again and keep you
breathing?”

3) Invoke the advanced directive and admit her to the ICU for
workup and potential ventilatory support.

4) Discuss with the patient and her family their understanding of
the situation, its meaning in relation to her disease process and
clarify her goals of care.
Advanced Directives
Advanced directives direct physicians on what type of care
patients do and do not want if unable to make a decision.

Living Will - comes into effect when a patient is terminally ill
and has less than 6 months to live. Limited by their vagueness;
they do not specify what interventions are to be avoided and
are generally applicable only to a dying patient.

Durable Power of Attorney for Health Care – a kind of advance
directive that selects a proxy decision maker- 2 types
- permanent
- springing
DNR order

Only 28% have prepared an advance directive
(The George H. Gallup International Institute, Spiritual Beliefs and the Dying
Process, A Report of a National Survey Conducted for the Nathan Cummings
Foundation and Fetzer Institute,October 1997, p. 47).
How to write an Advance Directive
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Use a form-from
physician/health dept.
Patient writes down wishes in
own language
By a lawyer
Use software package for legal
documents.
Ensure state laws are followed
and review with
physician/lawyer, notarize,
distribute to PCP/family
Can be revoked verbally/in a
legal document.
Do Advanced Directives Make A Difference?

UNC study - patients interviewed prospectively about preferences regarding
aggressive measures to sustain life and then followed for six months.
No significant association between patient willingness to receive aggressive
Rx and whether the patients actually received aggressive Rx when they
were critically ill. (17)
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Survey done of physicians using six hypothetical clinical scenarios. Cases
contained an explicit advance directive with a potential conflict between the
directive and prognosis, wishes of family/friends, or QOL.
-Physicians' choices differed from the patients' stated advance directives in
65 percent of cases, suggesting that they viewed the advance directive as
only part of the information needed to make treatment decisions. (18)
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Instructional directive — to compensate for the limitations of the original living wills.
One such instrument, the Medical Directive, asks patients to decide in advance
which of a dozen possible interventions they would favor in the event of any of four
potential scenarios:
Coma with virtually no chance of recovery
Coma with a small chance of recovery, probably to an impaired state
Advanced dementia plus a terminal illness
Advanced dementia
The interventions include cardiopulmonary resuscitation, respirator support, artificial
nutrition and hydration, major surgery, dialysis, chemotherapy, minor surgery,
invasive diagnostic tests, blood transfusions, antibiotics, simple diagnostic tests, and
pain medications.
Problems - does not address considerations that may be given to limitation of
treatment, such as moderate dementia or physical frailty.
- no discussion of the goal of the interventions, the directive does not allow
the individual to distinguish between short-term use of an intervention for a
potentially reversible illness, and long-term treatment for a chronic condition.
- it is a formidable document which may be quite intimidating in an older
impaired population.

a randomized trial of a complex advance directive was able to demonstrate that
nursing homes that used the directive had decreased hospitalization rates and lower
costs. (19)
 Instructional directives may significantly improve the ability of hospital-based
physicians to ascertain patients' preferences. (20)

Values history — The values
history seeks to ascertain which
facets of life are most important to a
given individual in the hope that this
will help define how they wish to
die.
The questionnaire asks patients to
state their religious background,
their views of dependency, and
attitudes towards physicians.

Combined directive —
Increasingly, advance-planning
documents are being developed
that include components of the
living will, the values history, and
the instructional directive, while
also designating a surrogate
decision-maker. A popular example
is the Five Wishes, which is legally
accepted in many states.
DNR orders…

Death - the “D” word has to come out of the closet.
Instead of asking: “ if your heart stops, would you want us to start it again…,”
try: “when (if) you die from this illness an attempt to resuscitate your body
will happen (by default). Would you want this to occur? It may not change
anything but potentially be disturbing for those caring for you and your loved
ones who might witness it.”
In a study of Medicare admissions to SNFs, 32% of residents had DNR
directives whereas < 2% had DNH directives. Factors associated with either
directive included older age, cognitive impairment, functional dependence
Caucasian ethnicity, being a resident at a rural or government facility. (21)
In a questionnaire study at a community cancer center –
- Only 34% of patients correctly understood the meaning of DNR
- 66% thought DNR was administered only to prolong life without realizing that
a DNR decision would result in no intervention even in potentially reversible
conditions. (22)
Case Scenario
A 79 y/o WM with severe COPD, CHF, CAD and A Fib is admitted to your
service with LE cellulitis. He is incidentally noted to have a lump in the neck
which proves to be metastatic carcinoma. MRI shows a nasopharyngeal
mass.
The diagnosis is communicated to him appropriately, oncology is consulted and
he is scheduled for outpatient biopsy of the nasopharyngeal mass and
dental extraction prior to radiation.
At the time of discharge, the patient reports that his cellulitis “feels worse” after
being switched to PO antibiotics and is very upset about the discharge plans
and wants to fire his primary team.
You will….
- Restart IV antibiotics
- Request a colleague to assume care
- Tell him “ there is no indication for change of therapy or continued inpatient
care”
- Ask him “ How do you feel about your diagnosis?”
Communicating Bad News

Find a quiet, private place – minimize interruption

Make sure the timing is right for the patient (and that there is
enough time)
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Give the news in person - sit close to the patient; avoid bad
body language - don’t cross legs, lean forward toward the
patient (+/- comforting touch)
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If possible (and if wanted by the patient), have support network
present (family, friends)
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Clarify the patient’s understanding of the situation - listen to the
patient.
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Reduce the element of shock - fire a “warning shot” - e.g., “ I’m
afraid I have bad news.”
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Tell the truth - but give the patient a chance to indicate how
much s/he wants to know - don’t force information on someone
who is not ready for it.
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Silence is good - pause after delivering the news so that patient
can absorb it and react appropriately.

Cultural differences exist (e.g., in some cultures, family will
control flow of information).
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Convey hope (if not for cure, at least for relief of pain and other
symptoms and for the best possible quality of life remaining)

Reassure the patient that s/he will not be abandoned!
(Ptacek, JT and Eberhardt, TL Breaking Bad News: A Review of the Literature, JAMA 276: 496-502, 1996)
SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient
with Cancer
(Bailea et al. The Oncologist, Vol. 5, No. 4, 302-311, August 2000)
STEP 1: S—SETTING UP the Interview
 Arrange for some privacy.
 Involve significant others.
 Sit down.
 Make connection with the patient.
 Manage time constraints and interruptions.
STEP 2: P—ASSESSING THE PATIENT'S PERCEPTION
STEP 3: I—OBTAINING THE PATIENT'S INVITATION
STEP 4: K—GIVING KNOWLEDGE AND INFORMATION TO THE PATIENT
STEP 5: E—ADDRESSING THE PATIENT'S EMOTIONS WITH EMPATHIC
RESPONSES
STEP 6: S—STRATEGY AND SUMMARY
“ When you are involved
in someone’s end of
life care, they (the
family) will never
forget you….
…… do it poorly and
they’ll never forgive
you.”
David Guidry,
I ICU Nurse
>>
Training Housestaff on communication

A self- administered questionnaire was given to 3 consecutive cohorts
(1996-98) of incoming interns (n=162, n=155 U.S. graduates) of which 152
completed it. They reported very little classroom teaching, clinical
observation, or clinical experience with end-of-life communication during
medical school. Clinical observation and experience with caring for and
communicating with dying patients were associated with greater perceived
comfort and skill, whereas classroom teaching was not. (23)

The Palliative Care Clinical Evaluation Exercise (CEX) is an experience
based intervention to teach communication skills in giving bad news and
discussing code status. It allows faculty to observe, evaluate and give
feedback to housestaff in their discussions with patients and families.
Completed by 44 residents at University of Pittsburg’s Categorical IM
Residency program- included pre-discussion counselling, resident-patient
discussion and feedback (total avg. 49.5 mins.) Self- ratings showed
improvement in 1 week. (24)
Case scenario
A 56 y/o African-American woman is admitted with SOB. She has extensive
metastatic carcinoma with an unknown primary, b/l hydronephrosis s/p
nephrostomy tubes with anuric renal failure, severe acidosis, volume
overload, anasarca, hyperkalemia, poor po intake, depression.
Her diagnosis and prognosis are explained to her and she voices
understanding.
When you attempt to address objectives of care, she insists on aggressive
treatment and refuses DNR orders.
She develops hypotension and hypoxic respiratory failure and is intubated and
started on pressors.
Her daughter who is next of kin refuses to withdraw care and wants her
mothers’ wishes followed.
You would..
 Keep her code status as full code
 Tell your cross cover to perform a “slow code”
 Declare the patient incompetent with another physician and put in place a
DNR order
 Call an ethics committee meeting
Withdrawal of Care
When to withdraw?


death is felt to be inevitable despite continued treatment.
dysfunction in three or more organ systems persists or worsens despite
active treatment
 At the patient’s/family’s request- when advance directives become available
These decisions remain difficult because of the paucity of data on different
clinical scenarios.
Whatever the definition of futility used, the physicians must act as advocates
for the patient. This requirement has, however, been criticized as
paternalistic.
The advance refusal of treatment is legally binding provided certain
conditions are met.
PRACTICAL CONSIDERATIONS IN TERMINATING MEDICAL TREATMENTS
PRACTICAL QUESTION
ANSWER
Is there a legal right to refuse medical
interventions?
Yes, the U.S. Supreme Court declared that
competent people have a constitutionally
protected right to refuse unwanted medical
treatments based on the 14th Amendment.
What interventions can be legally and
ethically terminated?
Any and all interventions (including
respirators, antibiotics, intravenous or
enteral nutrition, and hydration) can be
legally and ethically terminated.
Is there a difference between
No, the consensus is that there is no
withholding life-sustaining
important legal or ethical difference
interventions and withdrawing them?
between withholding and withdrawing
medical interventions. Stopping a
treatment once begun is just as ethical as
never having started it.
Whose view about terminating lifesustaining interventions prevails if
there is a conflict between the
patient and family?
The views of a competent adult patient
prevail. It is the patient's body and life.
Who decides about terminating life-sustaining
interventions if the patient is incompetent?
If the patient appointed a proxy or
surrogate decision maker when
competent, that person is legally
empowered to make decisions
about terminating care. If no proxy
was appointed, there is a legally
designated hierarchy, usually (1)
spouse, (2) adult children, (3)
parents, (4) siblings, and (5)
available relatives.
Are advance care directives legally enforceable?
Yes, as a clear expression of the
patient's wishes they are a
constitutionally protected method for
patients to exercise their right to
refuse medical treatments.
Goldman: Cecil Textbook of Medicine, 22nd ed.
Problems with withdrawal of care

The referring team request continued futile therapy
Explain the rationale and offer a second opinion. If conflict still remains, treatment
cannot be withdrawn. The family should not be informed of a decision to withdraw
that is then rescinded because of interteam conflicts. It will reduce their faith in
subsequent decisions + undermine confidence in the predicted outcome.

The patient's family requests continued futile therapy
Guilt usually plays a part, although religious and cultural factors may also contribute.
Agreement can usually be obtained by explaining the rationale again and offering a
second opinion from within or outside the intensive care team. It is best not to
withdraw treatment if there is conflict. However, the final decision rests with the
primary care team. This underlines the need for good communication.

The family requests inappropriate discontinuation of therapy
The rationale behind the therapy and the reasons why continuing treatment is
thought appropriate should be explained. The duty of care is to the patient, not the
family. Again, a second opinion can be offered.

The patient requests discontinuation of therapy
Explain to the patient the rationale for the treatment and that, in the opinion of the
primary team, a chance of recovery exists. It may be appropriate to offer a short term
contract for treatment (for example, 48 hours then review). Ultimately, the competent
patient has the right to refuse treatment even if that treatment is life saving.
Case Scenario continued….
The patient in the previous case scenario goes into
Ventricular Fibrillation…
The daughter still wants a full code…
The ethics committee is still debating the case…
Would you..
 Perform CPR
 Try a “slow code”
 Hold CPR and institute a 2 physician DNR order stat
 Call the code citing futility
Futility
Physicians and ethicists have argued that futile interventions can be unilaterally
withdrawn or withheld by the physician because:

They will not benefit the patient

Requiring futile interventions to be provided despite physician objections is
an abrogation of the physician's integrity or autonomy

Ineffective treatments squander resources
Futility can be
 "physiologic futility" (eg, reconnecting a severed spinal cord),
 nonphysiologic (or "normative") futility

All judgments regarding futility are in fact probability estimates.

Conflicts occur when the intervention can be justified from a physiologic
basis but still will not achieve specified goals of therapy.
--An example is a patient in shock and failing maximal medical therapy;
cardiopulmonary resuscitation (CPR) cannot be expected to return the
patient to a stable physiologic condition but, in the strictest sense, CPR is
not physiologically futile because it could restore circulation, albeit
temporarily.
Most authors have argued that physicians should unilaterally withhold or
limit CPR in such circumstances.
--Such therapies carry no benefits and may often prolong the suffering of
both patients and families

Most cases of nonphysiologic (or "normative") futility can justify designation
as such only after careful discussions with the patient or surrogate
-only then can the goals of therapy be clearly understood and the risks and
potential benefits assessed in the light of the patient's values and wishes.

Without a thorough discussion of goals, the concept of futility may be
misused and invoked by physicians because it allows them to make
unilateral determinations about the appropriateness of care.
Case scenario
A 76 y/o WM with end stage COPD is admitted with
bilateral lobar pneumonia, septic shock and goes into
multi organ failure. His family decides to withdraw care
and you place him on a morphine drip for comfort
measures….
A medical student rounding with your team asks- “Is this
euthanasia?”
Euthanasia- a historical perspective

Since Hippocrates, euthanasia and physician-assisted suicide have been
controversial issues.

1905: bill to legalize euthanasia defeated by Ohio legislature.

1930s: similar bills defeated in the British Parliament and the Nebraska legislature.

American society has deemed it inappropriate for terminally ill patients to actively
seek treatment that would end their lives unless that therapy primarily serves to
relieve pain. This "imaginary line" has been upheld by the United States Supreme
Court, and several states have enacted legislation against physician-assisted
suicide.

1997: U.S. Supreme Court stated that there is no constitutional right to euthanasia
and physician-assisted suicide, but that there also is no constitutional prohibition
against states legalizing these interventions. -Consequently, Oregon's legalization of
physician-assisted suicide was constitutional.

Voters consistently have defeated referenda to legalize physician-assisted suicide in
other states, and bills have been defeated. This is the best example whereby patient
autonomy has been limited by other considerations.

Today, physician-assisted suicide is legal in Oregon (since enacted by state
legislation in October 1997), and euthanasia and physician-assisted suicide are legal
in the Netherlands.
The numbers….

60 to 70% of Americans support euthanasia and/or physician-assisted
suicide for terminally ill patients who suffer intractable pain- public support
declines in other circumstances.

American physicians are much less likely to support euthanasia and/or
physician-assisted suicide, with oncologists being even more opposed

18 to 25% of American physicians have received requests for euthanasia
and/or physician-assisted suicide; 43 to 63% of oncologists have received
requests.

less than 5% of American physicians have performed euthanasia and/or
physician-assisted suicide. Among oncologists, 4% have performed
euthanasia and 11% have performed physician-assisted suicide during their
careers.

Dutch researchers : physician-assisted suicide causes complications in 7%
of cases, and in 15% of cases, the patients did not die, awoke from coma,
or vomited up the medication.

In about 20% of physician-assisted suicide cases, the physician ended up
injecting the patient with life-ending medication, converting physicianassisted suicide to euthanasia. These data raise serious questions about
how to address complications of physician-assisted suicide when
euthanasia is illegal or unacceptable.
A study of Oregon's first year of legalized assisted suicide analyzed data for
all terminally ill Oregon residents who received prescriptions for lethal
medications (Chin et al., 1999).

A total of 23 persons receiving prescriptions were reported to the Oregon
Health Division;

15 died after taking the medications,

six died from the underlying illnesses,

and two were still alive as of January 1, 1999.

The 15 assisted suicides accounted for five out of every 10,000 deaths in
Oregon in 1998.

Eight of the 15 were male and seven were female, and all were of European
American descent.

Only four of the candidates had psychological or psychiatric consultations.
DEFINITIONS OF ASSISTED SUICIDE AND EUTHANASIA
TERM
DEFINITION
Voluntary active
euthanasia
Intentionally administering medications or other
interventions to cause the patient's death with the patient's
informed consent
Involuntary active
euthanasia
Intentionally administering medications or other
interventions to cause the patient's death when the patient
was competent to consent but did not (e.g., the patient may
not have been asked)
Nonvoluntary active
euthanasia
Intentionally administering medications or other
interventions to cause the patient's death when the patient
was incompetent and was mentally incapable of consenting
(e.g., the patient might have been in a coma)
Passive euthanasia
Withholding or withdrawing life-sustaining medical
treatments from a patient to let him or her die (terminating
life-sustaining treatments)
Indirect euthanasia
Administering narcotics or other medications to relieve pain
with the incidental consequence of causing sufficient
respiratory depression to result in the patient's death
Physician-assisted suicide A physician provides medications or other interventions to a
patient with the understanding that the patient can use them
to commit suicide
Arguments for euthanasia

Autonomy justifies euthanasia and physician-assisted suicide.

Beneficence—sometimes, living can create more pain and
suffering than death. The reassurance of having the option
provides "psychological insurance“.

Euthanasia and physician-assisted suicide are no different from
terminating life-sustaining treatments that are recognized as
ethically justified. With no difference in patient consent,
physician intention, or the final result, there can be no
difference in the ethical justification.

The idea that permitting euthanasia and physician-assisted
suicide would undermine the physician-patient relationship or
lead to forced euthanasia is completely speculative and not
borne out by the available data.
Arguments Against Euthanasia

Kant and Mill - autonomy does not permit the voluntary ending of the conditions
necessary for autonomy- exercise of autonomy cannot include the ending of life
because that would mean ending the possibility of exercising autonomy.

Dying patients may have pain and suffering because they are not receiving
appropriate care-In Oregon's first year, only 15% of patients who received physician-assisted suicide
had uncontrolled pain; depression and hopelessness are the strongest predictors of
interest.

Clear distinction between intentionally ending a life compared with terminating lifesustaining treatments.

Adverse consequences -disturbing reports of involuntary euthanasia in the
Netherland - coercion of expensive/burdensome patients to accept euthanasia and/or
physician-assisted suicide-legal ramifications.

One study found that in 54% of euthanasia cases it was the family who made the
request; in 39% of euthanasia and 19% of physician-assisted suicide cases the
patient was depressed; in only half of the cases was the request repeated.
Safeguards….

Euthanasia and physician-assisted suicide should be considered only after all
attempts at physical and psychological palliation have failed.
A series of safeguards have been developed and embodied in the Oregon and the
Dutch procedures, as follows:

(1) The patient must be competent and must request euthanasia and/or physicianassisted suicide repeatedly and voluntarily;

(2) the patient must have pain and suffering that cannot be relieved by optimal
palliative interventions;

(3) there is a waiting period to ensure the patient's desire for euthanasia and/or
physician-assisted suicide is stable and sincere; and

(4) the physician should obtain a second opinion from an independent physician.
Oregon requires patients to be terminally ill, whereas the Netherlands has no such
safeguard.
Although there have been some prosecutions, there have been no convictions—
except for Dr. Kevorkian—when physicians and others have participated in
euthanasia and/or physician-assisted suicide.
Case scenario
Your 54 y/o clinic patient with metastatic colon cancer has failed multiple
chemotherapy regimens. She has intestinal obstruction with a G tube placed
for decompression.
She is admitted with acute SVC syndrome secondary to a PICC line placed for
TPN.
She and her family want aggressive therapy despite multiple discussions about
her poor prognosis and refuse a DNR order.
She and her daughter (who is a medical student) demand intra-arterial TPA and
admission to the ICU and plan to start a new salvage chemotherapy regimen
the following week.
You feel she should be on hospice and do not agree with further aggressive
treatment.
Can you withdraw from her care?
When can you withdraw from your role as a
physician?

The patient’s condition is such that care is no longer required

The patient terminates the physician-patient relationship

The physician agreed to only treat a specific ailment or injury; or to
only treat at a specific time or place.

The physician gives written notice of withdrawal of care and allows
sufficient time (10-30 days) for the patient to find another doctor
- you may refer the patient to another physician or to the local
medical society.
- advise patients with chronic conditions if they need ongoing medical
attention, stress any urgency, mention medication requirements and
health care recommendation.
- Document, return receipt for mailed letter.
When a patient dies-impact on physicians
>>

Seriously ill and dying persons may evoke strong emotional reactions in
clinicians, thrusting them into often intense, intimate relationships at a major
crisis point in the lives of patients and their families.

Clinicians may report a wearying sense of grief and depletion over recurrent
losses and an exhilarating sense of privilege in witnessing how some
patients and families cope using extraordinary dignity, acceptance, and love.

Staff support programs, which are routine aspects of most palliative care
services, can help all clinicians develop and maintain a working environment
that attends to emotional reactions, addresses staff conflict, and bolsters a
personal capacity to deal with multiple losses without becoming hardened to
suffering.

The camaraderie and support that can accompany interdisciplinary
teamwork is an important antidote to clinician burnout.
PATIENT'S PERSPECTIVE ON A
"GOOD DEATH"





Control pain and other symptoms
Avoid inappropriate prolongation of dying when
life no longer enjoyable
Relieve burden on the family
Achieve a sense of control
Strengthen relationships with loved ones
Singer PA, Martin DK, Kelner M: Quality end-of-life care: patients'
perspective. JAMA 1999;218:163–168.
Goldman: Cecil Textbook of Medicine, 22nd ed
“… in principle, people want a peaceful, dignified, comfortable
death but … in reality, they do not want it quite yet. They prefer
life-prolonging care in the hope that their peaceful, dignified,
comfortable death can occur later…”
(Ainslie, N. Letter to the Editor, Ann Intern Med 127: 242, 1997)
Websites
For patients…..
1)http://www.cancer.gov/cancertopics/factsheet/support/en
d-of-life-care
2)http://www.nlm.nih.gov/medlineplus/endoflifeissues.html
3) www.partnershipforcaring.org – Forms for assignment of
healthcare proxy, living will, advance directives.
References
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February 23, 1998
The National Center for Health Statistics (NCHS), Centers for Disease Control and
Prevention, from the latest National Mortality Followback Survey
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Ana L. Huerta-Alardín, MD, George L. Sternbach, MD, FACEP, and Joseph Varon, MD, FACP,
FCCP, FCCM
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25) Up To Date
Discussion