Medical Decisions at the End of Life

Ethical Framework for Treatment Decision-Making

• Medical decisions at the end of life are a subset of general medical decisions.

• A key question is whether ethical issues differ when life is at stake.

• The ethical values that guide healthcare treatment decision-making should determine the roles of decision-makers.

• Historically, physicians were the primary decision-makers due to their expertise, knowledge and experience; this was termed "physician paternalism."

• The rise of scientific knowledge might suggest increasing physician authority.

• However, there's been a rejection of physician paternalism in favor of shared decision-making, especially in the United States.

• This shift is due to consumer rights movements and challenges to authority.

• There has been a change in medicine’s fundamental goals, moving from life and health preservation to patient well-being and self-determination.

Well-being vs. Health

• Health is an objective matter determined by science.

• Well-being is subjectively determined by the patient’s aims and values.

• What serves the patient’s well-being depends on the patient’s values and life plan.

• The physician's role is to use skills to promote patient well-being, requiring patient participation.

• Increased treatment options necessitate patient involvement to determine the best alternative that serves their well-being.

Respecting Self-Determination

• Self-determination is the interest in making significant life decisions according to one's own values.

• It allows individuals to control their lives, form their identities, and take responsibility.

• Patient self-determination is vital in healthcare and is the basis for informed consent.

• Patients have the right to decide about treatment and refuse any treatment based on their values.

• Even if a patient's choices seem bad or irrational, their decisions must be respected.

• Near the end of life, patient priorities often shift to comfort, quality of life, and dignity.

• Patients may decide that a life with treatment is worse than no further life.

• There is no objectively correct point to stop treatment; it's a patient's individual decision.

• Competent patients can weigh treatment benefits and burdens and refuse or select treatments.

Surrogate Decision-Making

• When a patient is incompetent, a surrogate decides for them.

• A close family member typically acts as the surrogate.

• This is usually who the patient would want, who knows the patient best, and who is most concerned.

• The family is often the social unit responsible for caring for incompetent members.

• The law often grants legal authority to family members as surrogates.

• Principles guiding surrogate decision-making for previously competent adults:

  • Advance Directives Principle: Follow instructions in the patient’s advance directive.

  • Substitute Judgment Principle: Use knowledge of the patient to make the decision they would have made if competent.

  • These principles aim to respect the patient's self-determination.

  • Best Interests Principle: Decide based on what most reasonable persons would want in the circumstances, when there's no knowledge of the patient's values. When there is a patient that has never been competent their best interest will guide the decision-making.

• In reality, multiple principles may be used together to guide decision-making.

• The general treatment decision-making framework applies to life-sustaining treatments, though special issues may impose additional ethical limits.

Futile Treatment

• Families sometimes insist on futile treatment, such as resuscitation or ICU care.

• It is crucial to distinguish the different senses of futile treatment:

  • Physiological Futility: Treatment cannot produce the desired physiological effect.

  • Quantitative Futility: Very low probability (e.g., 1%) of the treatment having the hoped-for effect.

  • Evaluative Futility: Disagreement on whether the treatment's effect is a benefit for the patient.

• The key question is why a physician’s judgment should override the patient’s or surrogate’s values in cases of quantitative or evaluative futility.

• Policy debates aim to limit physicians’ rights to refuse treatment to only the uncontroversial cases, like physiological futility.

• Many institutions use ethics committees to resolve such conflicts.

Ordinary and Extraordinary Treatment

• Traditionally, a distinction was made between treatments that may be forgone and those that must be applied.

• Ordinary measures must be provided, while extraordinary or heroic measures need not be accepted.

• Possible interpretations of this distinction:

  • Invasive vs. non-invasive

  • Common vs. unusual

  • High-technology vs. simple

  • Costly vs. inexpensive

• Such definitions make it difficult to classify which treatments are ordinary or extraordinary.

• What is morally important is whether the patient judges the treatment to be beneficial.

• Roman Catholic moral theology defines extraordinary treatment as excessively burdensome or without benefit.

• The distinction between ordinary and extraordinary treatment should not classify treatments like nutrition and hydration or dialysis as always obligatory or optional because treatments depend on the particular patient’s condition and values.

• The ordinary-extraordinary distinction adds nothing to the general benefits–burdens framework and has been increasingly rejected.

Killing and Allowing to Die

• It is accepted that physicians must respect patients’ decisions to be allowed to die but that killing patients is morally different.

• The difference between killing and allowing to die is important if allowing to die can be justified when killing cannot.

• Killing is doing an action that causes someone to die who otherwise would not have died (e.g., pushing a non-swimmer out of a boat).

• Allowing to die is not acting to prevent someone from dying when you have the ability and opportunity to do so (e.g., not throwing a lifebelt to a drowning person).

• The issue is whether killing is, in itself, morally worse than allowing to die.

• Philosophers argue for the moral equivalence of the two by comparing cases that differ only in whether one is killing or allowing to die.

• James Rachels’s example compares Smith, who drowns his cousin for inheritance, and Jones, who watches his cousin drown and does nothing

• The question is whether Smith’s actions are worse than Jones’s.

• Even if killing is any worse morally than allowing to die, decisions to forgo life-sustaining treatment is allowing to die.

• Consider a patient that is respirator-dependent for breathing that wants to be removed from the respirator. It's understood that the decision would be allowing the patient to die.

• If a physician removes a patient from a respirator with the patient's content they are killing the patient, but the action is justified.

• The physician acts with the patient’s consent, with a good motive to respect the patient’s wishes, and in a social role in which he is authorized to stop the treatment.

• The factors determine whether what was done was morally justified, not whether it is a case of killing or allowing to die. The physician performs an action that causes the patient to die when otherwise she would have continued to live.

• Some believe that stopping cannot be morally justified while not starting would be morally justified because stopping and not starting life-support is itself morally important, even when all other circumstances are the same.

• The patient’s condition, prognosis, and wishes morally determine what should be done, not whether we do not start, or 15 minutes later stop, the respirator.

• Often the decision to start a life-sustaining treatment is made in conditions of uncertainty about whether it will provide a hoped-for benefit.

• What is morally important are the risks and benefits of a treatment, not whether it is started or must be stopped.

Treating Pain and the Doctrine of Double Effect

• Administering large doses of analgesics to alleviate pain may hasten death.

• There is substantial evidence that their pain remains inadequately treated, and one reason is the fear that doing so will cause the patient’s earlier death – that is, kill the patient.

• Since intentionally killing a patient is wrong, is treating pain at the risk of causing death wrong?

• It is widely accepted that patients should not be forced to endure great pain to avoid hastening death.

• The Supreme Court endorsed a right to receive adequate pain relief even if it hastens death.

• Justification for causing death in pain treatment often focuses on intention i.e relieving suffering.

• This invokes the “doctrine of double effect,” where an action with a bad effect (death) is justified if unintended and necessary to achieve a good effect (pain relief).

• It is difficult to determine whether death is intended or merely foreseen (e.g., when a patient asks to stop life-support because they want to die).

• Critics argue that the distinction between intended and foreseen cannot justify the moral difference between permissible and impermissible killing. The end may be relieving the patient’s suffering.

• Some base the moral difference on the fact that the patient’s death is certain in euthanasia, whereas in pain and symptom control it only becomes increasingly probable, but the outcome of death is independent of the distinction at the heart of double effect

• An alternative justification is that the physician is responsible for all consequences, intended or not.

• Justification relies on the patient’s request for pain relief, knowing it risks hastening death.

Conclusion

• There is widespread agreement about the rights of competent patients to decide about life-support but substantial differences remain between different countries.

• Ethical framework can only guide decision-makers and decision-making; many decisions will remain complex, uncertain, and agonizing for those involved in them.

• Debates concerning physician-assisted suicide and/or euthanasia extend beyond any ethical framework for life-sustaining treatment decisions and are only in their early stages, with their ultimate resolution far from clear.