Four Scenarios for End-of-Life Ethics Worksheet

First Scenario
Mary Johns is a 50 year old woman who has a profound level of intellectual
disability and adaptive skills. She has the co-occurring disability of cerebral palsy
and requires a custom-molded wheelchair for mobility, and 24 hour supports for
eating, dressing, hygiene and to participate in her favorite community activities.
Mary was institutionalized at an early age, and she has no family connections. She
has a court-appointed guardian who has worked with her for the past four years.
The guardian regularly participates in all interdisciplinary team meetings, and
despite the ever-changing staff in her residence, the guardian continues to be
diligent in communicating with the staff so as to keep informed of Mary’s needs. The
guardian also uses staff to assist her in communicating with Mary, since Mary does
not seem to recognize the guardian when they meet.

The guardian receives a call from the hospital. It is the medical resident informing
her that Mary has had a significant cerebral vascular accident (bleeding in the
brain). While it is a bit premature to say with certainty, the extent of the bleed that
is shown on the MRI would indicate that she will not likely recover her prior
abilities (the resident does not seem to be familiar with her previous level of
functioning, however). Because there was no indication of any advanced directives
when Mary presented at the emergency department, she was placed on a ventilator
to maintain her breathing. The medical resident is asking the guardian if she wishes
to execute a “do not resuscitate” order.

Will you consent to a “do not resuscitate” order?

It is now a week later. Mary continues to require ventilator support, but she has not
experienced any other crises, so although you had consented to a “do not
resuscitate” order, resuscitation has not been needed. However, today you are asked
to consent for a gastric feeding tube to allow Mary to receive adequate nutrition.
You have visited Mary 3 times in the hospital, but she doesn’t even open her eyes
when you call her name and rub her arm. The staff from the group home tells you
that they believe Mary will recover, she just needs time. The medical team at the
hospital report that the damage from the CVA is significant, and she is not likely to
return to her former self.

Will you consent to a gastric tube to provide her with nutrition?

_________________________________________________________________________________________________

Second Scenario
Robert Perkins is a 40 year old man with Down’s syndrome. You have been his
guardian since he was 18 years old and he exited the child welfare system. Despite
his profound level of intellectual disability, you have come to appreciate his sense of
humor over the years, and you know his favorite food (pizza), past times (walking to
the ice cream store up the street from his home), and favorite clothes to wear
(anything made of sweat shirt fabric).
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 Four Scenarios for End-of-Life Ethics Worksheet

Scenario Two—Cont’d
After two years, staff reported new behavioral problems that included agitation
after returning from his afternoon job, refusals to take a shower, and wanting to eat
dinner right after he already had dinner. Robert was eventually diagnosed with
dementia. Although placed on a drug that was supposed to slow the rate of
dementia-related problems, Robert has developed a seizure disorder, has had to
quit his job, and recently has been having choking episodes when eating.

Robert’s swallowing study shows that there is no physical obstruction in his

esophagus, but the speech therapist and the occupational therapist relate his eating
problems to the fact that he is forgetting how to eat.

You participate in an interdisciplinary team meeting. The staff who know Robert
well are in favor of using a gastric tube for nutrition. The primary care physician is
not in favor of the gastric tube because of the presence of dementia, the rapidity
with which he is declining, and the futility of a nutritional intervention to his
eventual outcome.

Will you consent to a gastric tube to provide him with nutrition?

_________________________________________________________________________________________________

Third scenario
Louise Parker is a 65 year old woman with profound intellectual disability. Her
older sister has always served as her surrogate decision-maker, but she was
recently diagnosed with advanced dementia, and you have been appointed by the
court to serve as Ms. Parker’s guardian.

You review the medical record and discover that Ms. Parker has always been very
active and enjoyed relatively good health with the exception of high blood pressure
that has been difficult to control over the years. Her primary care physician recently
referred her to a renal specialist because her glomerular filtration rate is 17, which
indicates that Ms. Parker will need to consider beginning kidney dialysis. Ms.
Parker’s staff tells you that they have no idea how that will be accomplished because
she requires sedation for routine dental exams, and to have blood drawn for routine
tests. You check with another guardian who tells you not to worry because she has
several people that she represents who are given heavy sedatives three times a
week when they receive dialysis.
Will you consent to renal dialysis?

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 Four Scenarios for End-of-Life Ethics Worksheet

Fourth Scenario
John Rosario is an 85 year old man with profound intellectual disability. You have
been his guardian for the past 5 years, since his only brother, who had been his
health care decision-maker, died suddenly. You know that when John was a child, he
was placed in the state institution, where he learned to enjoy cigarette smoking, and
continued smoking a half a pack a day until he was 60 years old. John was recently
diagnosed with Stage 4 lung cancer. You elected to not seek chemotherapy or
radiation treatment based on your interpretation of the medical recommendations
given to you.

When you visit John, he actually does not appear much different to you from before
the cancer diagnosis. He likes to watch TV, still enjoys eating his favorite foods, but
has recently stopped going to church because he gets too tired. You are notified that
John has been admitted to the hospital with pneumonia. The doctor in the
emergency department calls you to receive consent to treat the pneumonia. You are
surprised that you are being given the alternative not to treat the pneumonia.

Will you consent to the antibiotic treatment?

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 THE ETHICS WORKUP
Georgetown University Center for Clinical Bioethics

The ability to workup the ethical aspects of a case is an essential part of clinical reasoning. The emphasis in the ethics workup is on a
sensible progression from the facts of the case to a morally sound decision. Using the five principal steps of the ethics workup, guardians
and health professionals holding a variety of philosophical and religious positions regarding ethics can share a basic framew ork for
thinking about and discussing morally troubling cases:

1. WHAT ARE THE FACTS? It is vitally important to clarify the facts of the case in order to
anchor the decision. These facts are both medical and social. For example, both an
estimate of prognosis and an understanding of the patient's home situation are
often relevant to an ethical decision.

 Persons involved (who?)

 Diagnosis, prognosis, therapeutic options (what?)
 Patient preferences, beliefs, values (what?)
 Chronology of events, time constraints on decision (when?)
 Medical setting (where?)
 Reasons supporting claims, goals of current care (why?)

Nurses and social workers may be instrumental in ensuring that the patient/family
and other nonmedical health professionals understand the medical facts and that
the health care team understands pertinent nonmedical information about the
patient and family.

2. WHAT IS THE ISSUE? Is there a conflict at the personal, interpersonal, institutional or

societal level? Is there a question that arises either at the level of thought or feeling? Does
the question have a moral or ethical component? Why? (e.g., does it raise issues of rights,
moral character, etc.). The issue may not be ethical, but rather a diagnostic problem or a
simple miscommunication.

3. FRAME THE ISSUE: Some guardians and health professionals will explore the issue
using only one moral approach. Others will eclectically employ a variety of
approaches. But no matter what one's underlying moral orientation, the ethical
issue at stake in a given case can be framed in terms of several broad areas of
concern, representing aspects of the case which may be in ethical conflict. It is
therefore useful, if somewhat artificial, to dissect the case apart along the lines of the
following areas of concern:

a. Identify the appropriate Decision maker(s).

There are three rules of thumb for health care decision-making.
 Patients with intact decision-making capacity make their own decisions.
Decision making capacity entails the ability to 1) understand the information
necessary to make this particular decision (task specific), 2) reason in accord
with relatively consistent values, and 3) communicate a preference.
 Surrogates make health care decisions for incapacitated patients with a prior

Developed by Carol Taylor, P hD, RN, P rofessor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar 1
 history of capacity by using the substituted judgment standard. To the
extent that the patient’s values and preferences are known they should direct
decision-making. The surrogate asks, “What would the patient choose if able
to make and communicate a preference?” not “What would I choose if the
choice were mine?
 Surrogates of patients who never possessed decision-making capacity:
infants, small children and adults with significant intellectual disability and
lacking capacity, make decisions using the best interests standard. The
surrogate asks, “Which option is most likely to benefit and to not harm the
patient?” and considers relief of suffering, preservation and restoration of
function, and the quality and extent of the life sustained

b. Apply the criteria to be used in reaching clinical decisions.

1) The specific biomedical good of the patient: One should ask, what will
advance the biomedical good of the patient? What are the medical
options and likely outcomes?

Determine the effectiveness of proposed interventions

[A treatment is effective to the degree that it reverses or ameliorates the
natural progression of the disease]. This is an objective medical
determination to the degree that this is possible]

2) The broader goods and interests of the patient: One should ask, what
broader aspects of the patient's good, i.e., the patient's dignity,
religious faith, other valued beliefs, relationships, and the particular
good of the patient's choice, are pertinent to the decision at hand?

Use a benefit-burden analysis to determine if the benefits of the proposed

intervention outweigh the burdens. This is a subjective
determination, which can only be made by the patient or by those
who know the patient well.

3) The goods and interests of other parties: Health professionals must

also be attentive to the goods and interests of others, e.g., in the
distribution of resources. One should ask, what are the concerns of
other parties (family, health care professionals, health care institution,
law, society, etc.) and what differences do they make, morally, in the
decisions that need to be made about this case? In deciding about an
individual case, however, these concerns should generally not be
given as much importance as that afforded the good of the individual
patient whom health professionals have pledged to serve.

The physician explains the medical options to the patient/surrogates and if

indicated makes a recommendation. The patient/surrogate makes an un-
coerced, informed decision. Limits to patient/surrogate autonomy include

Developed by Carol Taylor, P hD, RN, P rofessor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar 2
 the bounds of rational medicine/nursing/social work, the probability of
direct harm to identifiable third parties, and violation of the consciences of
involved health care professionals. In problematic cases the interdisciplinary
team may meet to ensure consistency in their recommendations to the
patient/surrogate(s).

c. Establish the health care professionals’ and guardian’s moral/professional

obligations.
The primary object of all clinical decision making ought to be to secure the health,
well-being or good dying of the patient and to do this while simultaneously
respecting the integrity of the patient and all those involved in decision making and
implementing the plan of care.

4. IDENTIFY AND WEIGH ALTERNATIVE COURSES OF ACTION AND THEN

DECIDE: In clinical ethics, as in all other aspects of clinical care, a decision must be made.
There is no simple formula. The answer will require clinical judgment,
practical wisdom, and moral argument. Guardians should work closely with
health care professionals to authorize a decision that secures the best
interests of the patient: health, wellbeing, good dying. It is appropriate to
ask clinicians for a recommendation based on their clinical expertise and
experience. This should then be weighed with the guardian’s knowledge of
the patient and estimate of best interests. Since we live in a morally
pluralistic world, good people can reason differently about what ought to be
done.

Ethically relevant considerations:

1) Balancing benefits and harms in the care of patients
2) Disclosure, informed consent, and shared decision making
3) The norms of family life
4) The relationships between clinicians and patients
5) The professional integrity of clinicians
6) Cost-effectiveness and allocation
7) Issues of cultural and religious variation
8) Considerations of power (Fletcher, Brody, Miller & Spencer)

Grounding and source of ethics: philosophical (based in reason), theological

(based in faith), socio-cultural (based in custom)

5. CRITIQUE: It is important to be able to critique the decision that has been made by
considering its major objections and then either responding adequately to them or
changing one's decision. Some cases can even be taken to an ethics committee for further
reflection.

Developed by Carol Taylor, P hD, RN, P rofessor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar 3