Special Issues for the Nurse in

End-of-Life Care
 Introduction

Palliative care as a viable and worthwhile

choice for those at the end of life is often
obscured by the focus on technology.
From a societal perspective, demographic
trends separate the generations, and cultural
norms may no longer validate caring for one’s
aging family members in the home setting.
Consequently, many individuals and families
have not lived with or cared for a dying person.
 Five Principles of Palliative Care

1. Respects the goals, likes, and choices of the

dying person
2. Looks after the medical, emotional, social, and
spiritual needs of the dying person.
3. Supports the needs of family members.
4. Helps gain access to needed health care
providers and appropriate care settings.
5. Builds ways to provide excellent care at the end
of life.
 Changing Role of the Nurse

• It is not unusual for nurses to practice

autonomously in providing expert symptom
management under established standards of
care.
• Expert nurses adjust medications and dosages,
make multidisciplinary referrals, and engage
patients at the most existential of levels as
part of a normal day’s work.
 Cont,………………………………………….
The American Nursing Association (ANA) supports the
role of nurses in facilitating informed decision-making
for patients making choices about end-of-life care.
 In fact, it is not unusual for nurses to be involved in
discussing advance directives, prognoses, do-not
resuscitate (DNR) decisions, and a myriad of other
palliative care issues.
Distinguishing quality versus quantity of life, providing
objective feedback about the patient’s current status,
articulating outcomes of health care decisions.
 Selected Ethical Issues in Palliative Care

Concerns about individual autonomy versus societal

norms or the state’s interest
• Disparity between the patient’s goals of care and
those of family, friends, and the health care team
• Adequacy of communication essential for informed
decision-making
• Consistency of care across the illness continuum
• The allocation of health care resources across the
wellness–illness continuum.
 Cont,………………………………………
Nurses must be involved in discussions regarding
(1) Withholding and withdrawing treatment
(2) Providing care demanded by patients but deemed
inappropriate by the health care team
(3) Patient requests to stop eating or drinking
(4) Appropriate criteria for sedation to relieve
intractable distress
(5) Patient requests for assisted death.
As central providers of palliative care, nurses must
serve as a moral voice in these dialogues. In so doing,
they are able to honor their commitment to patients
and families.
 Pain and Symptom Management

 Unmanaged symptoms can strip patients of their

dignity, impose tremendous professional and ethical
burdens on nurses, and destroy the quality of life of
both patient and family

 Overwhelming and unrelieved pain can cause

anxiety, irritation, restlessness, sleeplessness,
depression, fatigue, emotional withdrawal, and
existential distress for both patients and caregivers
 Issues of Truth-Telling

• Delivering bad news is an essential part of practice in

the palliative care arena, and truth-telling, although
viewed as ethically appropriate behavior, can be
morally troublesome in a multitude of situations.
• The nurse should confirm that the patient is ready to
hear difficult news while concurrently giving
permission to defer the conversation until greater
emotional resources are available or family support is
present.
 A Collaborative Approach to Truth-Telling:
Answering Questions Regarding Diagnostic
Results

1. Report the patient’s concerns to the physician,

emphasizing the urgency of the matter.
2. Determine the physician’s availability.
3. If the physician is unavailable for a significant period,
offer to discuss the test results with the patient. If the
physician is available, plan to be present for follow-up
questions and support.
 Cont,………………………………….
4. Plan with the physician how best to respond regarding
the meaning of the diagnostic results and the continued
plan of care.
5. Explain to the patient that the physician is not available
and is concerned that the information be provided in a
timely manner.
6. Ask the patient’s permission to discuss the questions
asked. If the response is positive, determine which
individuals the patient would like to be present and ensure
they are there.
 Cont ,……………………………..
7. Use language the patient understands, answering all of
the questions.
8. Stay present, both emotionally and physically, until the
patient feels the conversation has ended.
9. Provide assurances that the physician will be available for
further discussion.
10. Provide a detailed description of the discussion in the
medical record and speak personally with the physician
about the patient’s intellectual and emotional responses
to the information.
 Honoring Patients’ Wishes

• Informed consent in end-of-life care is imperative for

reasons beyond the legal requirement. Patients and
families considering refusal of further treatment
should be told of the consequences of their choice,
just as they are informed of the benefits and risks of
other interventions.
 Cont,……………………………………………….

An authorized surrogate decision-maker.

In these circumstances, nurses are obligated
(1) to reaffirm informed consent
(2) to support the patient in the right to make personal
choices
(3) to ensure that the patient is not abandoned,
emotionally or otherwise.
 The inability to affirm a patient’s care
preferences may occur in situations such as the
following:
(1) providing care that one believes the
patient would want based on knowledge of
that individual’s value structure
(2) changing to a pattern of care that one
considers appropriate, but that does not reflect
the patient’s wishes, after family members
have left the clinical setting
 Cont,…………………………………
(3) allowing family members to speak for a timid
patient who has privately expressed health care
choices that are at odds with those of the family
(4) ignoring known preferences or honoring the
preferences of assertive family members when
the patient can no longer articulate personal
wishes.
 Abandonment

 Patients fear abandonment in response to decisions

that conflict with those of the health care team. The
fear of losing those whom one has known and
trusted at a time of crisis can be overwhelming.
 Less time may be spent with the patient, or such
visits may become less frequent, and direct verbal
engagement may become limited. Any of these
behaviors may be viewed by the patient and family
as emotional withdrawal at the least and
abandonment at the worst.
 Cont,………………………………………….

Moreover, abandonment can be very subtle. If a patient

or patient advocate chooses a course of care that is
discomforting or unacceptable (i.e., refusing treatment,
stopping active treatment, demanding treatment
deemed useless by the health care team, or asking for
removal of life-prolonging interventions), health care
professionals may withdraw in a multitude of ways.
 Futility and Withdrawal of Treatment

 A futile treatment does not serve a valid goal of

medical practice, with it being the normative
professional responsibility of the medical team to
decide whether desired treatment courses are
realistic.
 A treatment is futile if it is unsuccessful more than 99%
of the time (a standard of efficacy).
 Others have indicated that treatment outside accepted
community standards could be understood as futile (a
standard of communal evaluation).
 Cont,………………………………………..
In the majority of situations in which death is
imminent, consensus is reached and life-sustaining
interventions are not provided.
Examples include life-sustaining interventions for a
patient who is in a persistent vegetative state,
resuscitation efforts for patients with life-threatening
illnesses, use of chemotherapy for patients with
extensive metastatic cancer, and use of antibiotics or
artificial hydration and nutrition for patients who are
in the advanced stages of an illness.
 A Due-Process Approach to Futility Situations:
A Paradigm for Preventing and Resolving
Conflicts
1. Attempt to negotiate an understanding
among patient, surrogate, and the health care
team as to what constitutes futile care in
advance of the actual conflict.
2. Establish joint decision-making as the goal.
Use the assistance of consultants as appropriate.
 Cont ,………………………………………..
3. If disagreement persists, suggest use of other
consultants, colleagues, and the institution’s
ethics committee. This provides the maximum
possible place for patient autonomy.
4. If institutional review supports the patient’s
position and the physician is uncomfortable with
the decision made, transfer of care may be
arranged.
 Cont ,……………………………………..
5. If review supports the health care team’s
position and the patient or surrogate disagrees
with the decision, transfer to another institution
or provider can be arranged if both parties agree
and if possible.
6. If no receiving institution can be found, the
problem remains unsolved and further
discussion must continue.
 Assisted Death

• The adult patient’s right to control health care

interventions has historically allowed individuals to
refuse to seek medical care, refuse recommended
care, stop hydration and nutrition and other
prescribed recommendations, and forgo or discontinue
life support.
• These historical methods of ending life sooner have
become commonplace. They are legally and also
morally acceptable to the majority of practitioners
 Assisted Death

Oregon nurses who choose to continue caring for a

patient requesting assisted suicide may
(1) explain the law as it currently exists
(2) Discuss and explore options with the patient and
make referrals if Appropriate
(3) explore reasons for the patient’s request, ensuring
that depression is thoroughly evaluated and treated if
present
 Cont,……………………………………
(4) maintain patient and family confidentiality
(5) provide care and comfort throughout the dying process
(6) remain present during the patient’s self-administration
of the medication and subsequent death to console and
counsel the
Family
(7) continue to provide ongoing emotional support
(8) be involved in policy development within the health
care facility or the community.
 Cont,……………………………………….
• The nurse who feels ethically compromised in
caring for a patient who has chosen assisted
suicide is obliged
• (1) to provide for the patient’s comfort and safety,
• (2) to withdraw only if assured that alternative
sources of end of-life care are available to the
patient, and
• (3) to continue to provide ongoing care if unable
to transfer that care to another provider.
 Cont,………………………………………………….

Nurses who are asked about PAS or asked to assist with

a patient’s suicide are ethically bound to
(1) respond nonjudgmentally to requests
(2) provide all relevant information about the state’s
legal restrictions as well as alternative treatments and
options
 Cont,………………………………
(3) participate with the multidisciplinary team in a
thorough evaluation of the patient’s rationale for the
Request
(4) assist in the clarification of goals
(5) ensure that all symptoms, including depression, are
assessed and managed at a level acceptable to the
patient and family
The Debate Concerning Assisted Death
 Liberty interest vs state’s interest

Pro Con
• There is equal • There is constitutional
protection. under the power to override
law that allows the right certain rights in order to
to refuse or withdraw protect citizens from
treatment and to irrevocable acts.
commit suicide.
 Autonomy

Pro Con
• Every competent person • Human beings are the
has the right to make stewards but not the
momentous decisions absolute masters of the
based on personal gift of life.
convictions.
 Quality of care

Pro Con
• Removal of legal bans • The aim of medicine
would enhance the should
opportunity for be to facilitate a death
excellent end-of-life that is pain free but also a
care for all human experience. A good
requirements that the natural death contributes
very best in palliative value to
care be provided the community.
 Nonmaleficence

Pro Con
• From the patient’s The role of the nurse has been
perspective, there is no to promote, preserve, and
difference between protect human life. Assisted
death violates the oath to “do
ending life by providing
no harm” and destroys trust
a lethal prescription and
between the patient and
by stopping treatment
nurse.
that prolongs life.
 Beneficence

Pro
• More patients could benefit
from relief that is now
available illegally
relationships with
physicians willing to risk
assisting them to die.
Con
• A misdiagnosis of the
illness, inadequate
assessment of competence,
or pressure from the family
or the physician might place
patients in jeopardy.
 Slippery slope

Pro Con
• The states could adopt Although assisted death
regulations to ensure might initially be
informed, competent, restricted to competent,
and freely made terminally ill patients, in
decisions. time many other kinds of
patients might be assisted
to die in more aggressive
ways
 Allocation of Resources

• Access to care, the site of care, the philosophical

approach to care, and the quality of the care provided are
troubling issues.
• The high prevalence of death among ICU patients and
readmissions to the ICU generate significant cost
expenditures
There were three primary findings of note:
(1) access to care was comparable
(2) there were few differences in the quality of the doctor–
patient relationship, and
(3) experiences as gauged by specific outcome measures
were comparable.
 The Role of the Nurse in a Bioethical Community

• As an integral part of the interdisciplinary team,

nurses must sit at this table to provide descriptive,
specific, and personal perspectives on moral issues;
advocate for the patient and family; and immerse
themselves in the milieu of accountability
• The nurse must have the courage to speak of difficult
issues, involve patients and families in the
discussions, and develop both the patience and the
perspective necessary to genuinely hear all voices.
 Cont,…………………………..
If there is not yet a committee at the institution
(hospital, hospice, or home care agency), nurses
should
(1) be part of the endeavor to create a committee
(2) identify and recommend other health care providers
and consumer and public members for membership
(3) advocate for training in bioethics provided by a
qualified ethicist
(4) participate in the training and education
 Cont,……………………………………
(5) assist in establishing a methodology for consistent,
ongoing development and education for committee
members, other health care providers, and the
institution’s lay members
(6) assist in formulating policies regarding treatment
issues (e.g., consent for treatment, treatment refusal,
withholding and withdrawing of care, withholding
nutrition and hydration, requests for assisted death);
and
(7) assist in formulating policies for education, case
consultation, and documentation of the committee’s
work
 Considerations Regarding the Future Role
of Nursing in End-of-Life Care
• First, in thinking about advance conversations and
end-of life planning, the professional must
incorporate the constellation of friends and
colleagues who support the patient.
• The second critical issue in the future will be support
for hospice and palliative care. Pioneering efforts by
a multitude of practitioners and support from
multiple segments of the public and private sectors
are allowing robust consideration of a variety of ways
to create innovations in care of the dying.
 Cont,…………………………………..

• Taking on the care of the dying is an extraordinary

responsibility, one that calls on the development of a
vision of a life of virtue, of serious personal
consideration of what obligations the nurse will take
on, and of a turn from the objective to the
subjective. For such work, nurses will need to resist
strong pressures to rescue and fix what cannot be
repaired.