32. Ethics and Palliative Medicine

Introduction: In caring for critically ill patients, it is inevitable that ethical issues will arise

As customs, laws, and ethical beliefs vary widely among societies and cultures, moral and end-of-life issues that inevitably arise in the intensive care setting can result in conflict.

This chapter explores a subset of ethical issues that frequently arise in the intensive care unit.

Treatment Decisions

Key ethical tenets are

Autonomy: the right to self-govern

Beneficence: the obligation to promote good and to prevent or remove harm

Justice: the goal to promote the greatest benefit to the largest number of individuals while inflicting the least amount of harm; and

Nonmaleficence: the need to refrain from inflicting harm

Nonmaleficence is considered the core of ethical and moral practice with decisions based on this tenet sometimes superseding even those based on beneficence and/or justice.

Patient autonomy, the respect for an individual’s right to make decisions about their medical care is a highly valued ethical principle in US medicine.

Autonomy is best preserved by involving the patient in medical decision making, whenever possible.

Using the principle of substituted judgment, a surrogate (typically a family member or health care proxy) will make decisions for a patient when he or she cannot.

The surrogate is to make the decision that the patient would make given the situation; this decision may even differ from the surrogate’s wishes.

If the surrogate doesn’t know what the patient would decide, he or she should make the decision he or she feels is in the best interest of the patient and which best reflects the patient’s previously voiced beliefs and personality.

Competence is a legal term; individuals over the age of 18 are presumed competent unless deemed incompetent through legal proceedings.

In contrast, decision-making capacity is a medical term; individuals who can make informed health-care decisions are deemed to have decision-making capacity.

If capacity is questioned, then a physician should evaluate the patient to determine if he or she has the ability to receive and understand medical information, discern various options presented, and choose a course based on the information offered.

In complicated situations where a patient’s decision-making capacity is questioned, assessment by a consultant psychiatrist may be helpful.

Obtaining informed consent preserves patient autonomy and is consequently an ethical responsibility of the treating clinician.

Informed consent consists of a dialogue between the patient and health-care provider describing the risks, benefits, and treatment options as applied to the patient’s situation.

Ideally, informed consent should be obtained for all procedures, therapies, and research.

Many critically ill patients may not have decision-making capacity due to the gravity of their illness and/or because they are receiving sedative/analgesic medications to reduce suffering.

In these circumstances an advance directive and/or a surrogate decision maker may be helpful.

An advance directive is a statement specifying the patient’s health care wishes should he or she become unable to make decisions.

The exact form of an advance directive can vary from state to state and even from person to person.

Increasingly, the US judicial system is recognizing that advance directives may be verbal in nature and that what a patient has communicated to family, friends, or health-care providers regarding treatment preferences may provide an acceptable framework for care decisions in the absence of written documentation.

A health care proxy or durable power of attorney for health care is a legal document prepared by the patient, in advance of an incapacitated state, delineating the person (health-care agent or surrogate) he or she would wish to make health-care decisions under those circumstances.

A living will is a document describing the therapies or interventions that a patient would wish to refuse or receive under certain circumstances.

These documents elucidate a patient’s prior expressed wishes and should be considered in the decision-making process; however, US states vary as to whether living wills are legally binding.

These described directives in documents can vary from general principles to tremendously detailed requests.

Since it is impossible to predict exact circumstances surrounding severe illness, many living wills pertain only to the limited circumstances of brain death, persistent vegetative state, or a “terminal illness”; consequently, many living wills are only marginally helpful in a modern critical care environment.

Interpretation of the living will is best supplemented with communication with the people closest to the patient.

Family involvement in discussions involving treatment of a noncommunicative critically ill patient is vital to appropriate care and is best conducted in a quiet, private environment in an unhurried fashion.

The patient should be included if he or she has capacity.

Goals of Care: The goals of ICU therapy should be confirmed with the patient and family:

For some patients, there are obvious goals such as preventing imminent death, curing acute disease, preventing /relieving pain and suffering, and eventually returning the patient to his/her premorbid level of function.

In some situations, patients may only hope to delay the disease process and occasionally, ICU care is requested to prolong a patient’s life long enough to allow for close relatives to arrive and pay last respects or to consent to organ donation prior to the patient’s death.

When discussing goals of therapy, the patient’s values should be elicited and emphasized.

It is important for the health-care team to discuss the patient’s prognosis and arrive at a consensus before meeting with the family.

The prognosis of the patient is very important in setting realistic therapeutic goals.

Recently validated criteria, the Iowa criteria, may help patients, families, and clinicians to delineate a patient’s goals of care between one of eight domains: (1) be cured; (2) live longer; (3) improve health; (4) maintain health; (5) be comfortable; (6) a particular personal life goal; or (7) other.

Once the prognosis has been discussed, the family or physician may propose a “do not resuscitate” (DNR) order.

The DNR status seeks to clarify which therapies will be offered to the patient in case of acute, life-threatening instability that requires immediate treatment in order to prevent death.

It must be emphasized to the family that an agreed upon limitation of treatment, such as a DNR, does not signify that a patient’s condition is “hopeless”; desired therapies will be continued unless further decisions, such as to withdraw life-sustaining treatments, are made.

Moreover, interventions to optimize the patient’s quality of life can be continued throughout the ICU stay, even up to the moment of death, if needed.

In some situations a decision to withdraw or withhold therapies may be made.

In this setting, the majority of critically ill patients lack decision-making capacity and a surrogate is involved in decision making.

If the patient’s wishes regarding end of life care are unknown, the principle of benefit versus burden may be used.

In this process, the potential helpful versus harmful effects of each therapy are weighed.

When a decision is made to withdraw or withhold therapy, critical care providers should support not only patients but also their family members throughout the dying process.

Providers may also choose to initiate discussions regarding patient and family wishes after death, including organ donation and autopsy.

Although such discussions may be viewed as awkward while the patient still lives, most families appreciate honest attempts by the care team to prepare them for what lies ahead.