Jason T. Eberl, Ph.D.

Semler Endowed Chair for Medical Ethics

Marian University College of Osteopathic Medicine

Affiliate Faculty, Indiana University Center for Bioethics

Affiliate Faculty, Fairbanks Center for Medical Ethics

Ethics of end-of-life care, including autonomous choice, double-effect, ordinary and extraordinary treatment, suffering, and quality of life.

American Medical Association’s position on euthanasia and non-utilization of life-sustaining treatment.

Models of surrogate decision-making for incompetent patients.

Respect for Autonomy

Nonmaleficence

Beneficence

Justice

Defined in terms of liberty and agency Negative duty not to violate a person’s liberty

Requirement of consent for treatment

Positive duty to promote a person’s agency Requirement that consent be adequately informed

Is had by a person in degrees The very nature of illness or disability – rendering one a “patient”

– diminishes one’s autonomy Various negative emotions – even if one is not “clinically

depressed” can diminish one’s autonomy

Not purely individualistic Input from family and friends often affects one’s decision-making Patients may have, or perceive themselves to have, particular

obligations to their family that impacts their decision-making

Obligations expressed in the Hippocratic Oath –“I will use treatment to help the sick according to my ability and judgment, but I will never use it to injure or wrong them”

Generally, obligations of nonmaleficence override obligations of beneficence in cases of conflict

Principle of Double-Effect

One act may have two (or more) effects: one morally good (or at least neutral), the other morally bad (i.e., prima facieimpermissible)

Such an act is morally permissible if the following conditions obtain: The bad effect is not directly intended, but is merely foreseen to

occur or is “risked” The bad effect is not a means by which the good effect is

brought about The negative value of the bad effect does not outweigh the

positive value of the good effect

Application: Palliative medication which hastens death

Quality of life judgments may alter what would prima facie be a “harm,” e.g. ending a patient’s life, into a “benefit,” e.g. if a patient is suffering intractably from a terminal illness where any further curative or even palliative treatments would be futile.

Definition of eu-thanatos: “good death”

Three categories of euthanasia:

Voluntary

Non-voluntary

Involuntary

How physician-assisted suicide is distinct

Fundamental ethical questions:

Can an individual rationally and morally licitly kill oneself?

Should healthcare professionals be complicit in assisting terminally ill patients to kill themselves?

Can an individual rationally and morally licitly kill oneself?

Thomas Aquinas (13 cent.) Triple indictment of suicide:

Violates the inherent natural inclination toward self-love

Violates the “common good” of one’s community

Violates God’s “ownership” of human life

Immanuel Kant (18th cent.) Suicide is intrinsically irrational insofar as one cannot consistently

will to kill oneself out of self-love.

Suicide violates one’s strict duty to oneself not to utilize oneself merely as a means towards the end of relieving oneself from suffering.

Can an individual rationally and morally licitly kill oneself?

David Hume (18th cent.) Why should we presume that God has reserved to Himself the

disposal of human lives when all other events are governed by laws of nature?

One who retires from society does no harm to that society, only ceases to do good for it; but one who is terminally incapacitated likewise offers no benefit for society and in fact may become a burden.

Suicide in the case of insurmountable suffering can in no way be construed as a violation of a duty to ourselves.

Arthur Schopenhauer (19 cent.) There is no rational basis for objecting to suicide outside of a Christian

religious context. Both bodily and mental suffering may constitute sufficient reason to

“awaken” ourselves from the “nightmare” of life.

Should healthcare professionals be complicit in assisting terminally ill patients to kill themselves?

Arguments pro:

from duty of beneficence

from duty to respect autonomy

Arguments con:

from duty of nonmaleficence

from the fundamental nature of the healthcare profession

On Euthanasia and Physician-Assisted Suicide:

It is understandable, though tragic, that some patients in extreme duress--such as those suffering from a terminal, painful, debilitating illness--may come to decide that death is preferable to life. However, permitting physicians to engage in euthanasia would ultimately cause more harm than good. Euthanasia is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.

The involvement of physicians in euthanasia heightens the significance of its ethical prohibition. The physician who performs euthanasia assumes unique responsibility for the act of ending the patient’s life. Euthanasia could also readily be extended to incompetent patients and other vulnerable populations.

Instead of engaging in euthanasia, physicians must aggressively respond to the needs of patients at the end of life. Patients should not be abandoned once it is determined that cure is impossible. Patients near the end of life must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication.

On Withholding or Withdrawing Life-Sustaining Treatment

The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the preferences of the patient should prevail. The principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition. Life-sustaining treatment may include, but is not limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics, and artificial nutrition and hydration.

There is no ethical distinction between withdrawing and withholding life-sustaining treatment. A competent, adult patient may, in advance, formulate and provide a valid consent to the withholding or withdrawal of life-support systems in the event that injury or illness renders that individual incompetent to make such a decision. A patient may also appoint a surrogate decision maker in accordance with state law.

Founded in Roman Catholic moral theology

Has since been adopted by secular bioethicists

Basic distinction:

“Ordinary” care is morally obligatory insofar as it promotes the good of saving life and avoiding euthanasia by omission

“Extraordinary” care is morally optional insofar as it may be excessively burdensome or disproportionate in relation to expected benefits

Currently debated criteria:

Traditionally founded:

Not too difficult, expensive, or impossible to obtain, relative to one’s socio-economic condition

Does not involve excessive burden (physically, financially, or psychologically/emotionally) for patient and caregivers

Has some hope of benefit

Does not entail too meager a quantity of life, even if success is likely

Does not involve considerable pain

Is not excessively feared by or repugnant to the patient

Contemporary:

From a medical/scientific perspective:

Ordinary means are: Common; simple; noninvasive; inexpensive; established;

statistically successful; reasonably available

Extraordinary means are: Unusual; complex; invasive; costly; experimental;

inherently unsuccessful; unavailable

In relation to a patient’s circumstances: Beneficial and useful vs. Burdensome and futile

Burden/Benefit ratio

Life as a benefit: “Human bodily life is a great good. It is a good of the person and

intrinsic to the person and is not a mere instrumental good or good for the person”

William E. May, “Criteria for withholding or withdrawing treatment” Linacre Quarterly 57 (1990): p. 81

“Sanctity of life” vs. “Quality of life”

Four-fold conception of the patient’s “good”: Biomedical good of the patient Particular good of the clinical choice at hand Good of the patient as a dignified human being Ultimate good of the patient – perhaps spiritually defined

Pain perception is primarily a physical sensation; it is what follows beyond this mere sensation that constitutes suffering:

“Pain … is a physical sensation, like visual sensations or sensations of temperature. It supplies information as to the state of a given organism, and (doctors say) is a warning signal. Suffering, on the other hand, is a mental experience, like other feelings such as joy, fear and hope. Pain (particularly sharp or chronic pain) may cause physical suffering. It is one of the sources of suffering … But pain is not the sole cause of mental suffering. There are many others: the loss of independence, or of love, or of ‘face’ sometimes cause suffering that is both intense and of long duration”

Jozef Kozielecki, “Suffering and Human Values” Dialectics and Humanism 4 (1978): p. 124

Realm of embodied action – the subject is vulnerable to a disruption between her embodied capacities and her own possibilities of action

Theater of intersubjective life – the subject is vulnerable to a rupture between those roles in which she has identified herself and those roles into which she finds herself cast

Arena of the will – the subject is threatened by disruptions within herself of three kinds: Irreconcilabilities within her own life-history Incommensurabilities between her power to accomplish and her own

ideals of mastery and production Contradictions between her conduct and regulative moral principles that

she recognizes as binding

Sphere of universal alteration – the subject is vulnerable to a rupture between her condition and the image of the whole by which she is bound to life and the world

Mary Rawlinson, “The Sense of Suffering” Journal of Medicine and Philosophy 11 (1986): p. 41

Religiously based:

Suffering as redemptive: Suffering for the sake of some larger social or higher spiritual good Suffering as punishment and source of atonement Suffering as a trial Suffering as healing

Non-religiously based

Response to suffering as a source and exercise of virtue Response to suffering as an exercise of autonomy Shared experience of suffering as a source of solidarity

Friedrich Nietzsche: Effort and striving are the means whereby a “higher order” of humanity will evolve

Emmanuel Levinas: Suffering teaches us to care for others

Ordinary/extraordinary distinction as a conceptual tool for ethical decision making regarding non-utilization of treatment:

President’s Commission (1983):

“Despite the fact that the distinction between what is ordinary and what is extraordinary is hazy and variably defined, several courts have employed the terms in discussing cases involving the cessation of life-sustaining treatment of incompetent patients.”

“If the ordinary/extraordinary distinction is understood in terms of the usefulness or burdensomeness of a particular therapy, however, the distinction does have moral significance. When a treatment is deemed extraordinary because it is too burdensome for a particular patient, the individual (or a surrogate) may appropriately decide not to undertake it.”

What value, if any, is there to a patient’s suffering?

Suffering may have a spiritual or redemptive value for patients who belong to various religious traditions.

Suffering may also have value for any patient who is able to experience human solidarity, exercise his or her autonomy, and cultivate virtue.

What does the potential value of suffering entail with respect to defining extraordinary care?

Any value to suffering is not inherent, but instrumental and potentially experienced by an individual patient and his or her caregivers.

If such value is experienced, a patient may elect to undergo certain burdensome treatments they would not elect to undergo otherwise. E.g., a patient who must undergo dialysis for kidney failure may elect

to do so if it allows them to enjoy more qualitatively rich time with their family and friends;

whereas a patient who is alone or feels “abandoned” may see no point to continuing dialysis.

Since the experience of suffering and the discovery of its potential instrumental value are both subjective, the declaration of “extraordinary” care must be made relative to each individual patient.

Concept of competence = “the ability to perform a task”

Global vs. specific competence

Degrees of competency

Inability to … express or communicate a preference or choice

understand one’s situation and its consequences

understand relevant information

give a reason

give a rational reason (although some supporting reasons may be given)

give risk/benefit-related reasons (although some rational supporting reasons may be given)

reach a reasonable decision (as judged, e.g., by a reasonable person standard)

Sliding-scale strategy in evaluating evidence of competence

Ability to make reasoned judgments

Adequate knowledge and information

Emotional stability

Commitment to the incompetent patient’s interests, free of conflicts of interest and free of controlling influences by those who might not act in the patient’s best interests

Designated health care representative with durable power of attorney Documented presence of a legal HCR upon admission is less than 20%

nationally

Closely-related family members as default Spouse, Adult Children, Parents, Adult Siblings

Typically does not include domestic partners or same-sex spouses; though some states have enacted specific legislation to cover this gap, as well as allow for step-parents, grandparents, or grandchildren where appropriate; or even “close friends” when no family member is available.

Court-appointed guardian for Unbefriended patients – Volunteer Advocates Program at Eskenazi Health

In cases of suspected abuse, neglect, or where the healthcare staff believe the current surrogate is not making decisions in the patient’s best interest

Thirty states with surrogate decision-making statutes include a hierarchy of default surrogates among family members, e.g., Spouse

Adult Children

Parents

Adult Siblings

Indiana does not employ a hierarchical model: all legally recognized closely-related family members must reach consensus agreement

Substituted judgment: What would the patient want/decide?

Not: what do you want for the patient?

Pure autonomy: Appeals to the following to determine the previously competent patient’s actual wishes: Written document: advance directive or living will

Oral directive to a family member, friend, or health care provider

Durable power of attorney

Patient’s convictions expressed about other cases

Religious beliefs and tenets

Patient’s consistent pattern of conduct regarding prior treatment decisions

Patient’s best interests:

Objective quality-of-life criterion

Inherent danger of applying a “reasonable person” standard to individual cases

Two views of the “Margo” case

Ordered set of standards:

Autonomously executed advance directives

Substituted judgment

Best interests