Mappes & DeGrazia, Chapter 6: Lecture Notes/Outline by Larry Hauser
Death and Decisions Regarding Life-Sustaining Treatment

• The Definition of Death
• Refusal of Life-Sustaining Treatment by Competent Adults
• Ethics of Resuscitation Decisions
• Advance Directives and Treatment Decisions for Incompetent Adults

The Definition of Death

• Two types of cases at the center of controversy
• "brain-dead" or "whole brain-dead" patients
• entire brain has irreversibly ceased functioning
• so they are irreversibly unconscious
• but cardiopulmonary function is maintained successfully by a respirator and allied technology
• "persistent vegetative state" (PVS) patients
• brainstem function remains sufficient to sustain respiration and heartbeat
• but due to irreversible damage to "the higher brain" or cerebral cortex
• consciousness and cognition are irretrievably lost
• Issues
• Are patients in each group alive or dead?
• What is the morally appropriate treatment for them?
• Dueling standard
• Traditional standard: permanent absence of respiration and and heartbeat
• according to this standard brain-dead patients are alive
• as long as cardiopulmonary function can be artificially maintained
• Whole-Brain: permanent nonfunctioning of the whole brain (proposed in an influential Harvard Medical School ad hoc committee report in 1978)
• according to this standard "whole brain-dead" patients are dead
• even if cardiopulmonary function is being artificially maintained
• Bio-Ethical Importance of the Difference: Examples
• Concerning organ transplantation
• if the patient is already dead, then taking vital organs for transplantation (given appropriate consent) is morally unproblematic
• if the patient is not already dead then taking the organs will be the cause of the patients death, which is morally problematic
• you're killing someone
• to benefit someone else
• Removal from respirator
• if the patient is alive then we are allowing the patient to die by removing life-sustaining treatment
• if the patient is dead then the treatment isn't truly life-sustaining and we don't allow the patient to die by removing it
• Change of Consensus: Whole-Brain has become the Accepted Standard
• 1981 President's Commission's 1981 report Defining Death recommends the adoption by all states of the Uniform Determination of Death Act
• according to the Uniform Determination of Death Act an individual is dead who has sustained either
1. "irreversible cessation of circulatory and respiratory function" or
2. "irreversible cessation of all functions of the entire brain, including the brain stem"
• Live Issues concerning the status of PVS individuals: Discussion in text
• Robert M. Veatch
• proposes a "higher brain-death" standard according to which a patient is death who has sustained irreversible cessation of higher brain function as most rational.
• this should be the default position
• nevertheless, each individual should be allowed to choose the definition of death
• most responsive to their personal or religious convictions
• to be applied in their own case
• through the exercise of a conscience clause which would allow them to stipulate either
• the traditional standard
• or the whole-brain
• Culver & Gert
• urge a crucial distinction between
1. the death of the organism
2. the organism ceasing to be a person
• traditional definition (following John Locke) a (moral) person has
• consciousness: self awareness, including memory and foresight
• cognition: intellectual, conceptual, or reasoning abilities
• crucially
• there could be nonhuman persons: perhaps dolphins, or ETs, or AIs
• there can be and are human nonpersons
• very young infants are not persons (yet)
• the profoundly retarded and demented and not full persons
• PVS individuals might be said to be profoundly nonpersons.
• against the "higher brain-death" standard
• should continue to think of inducing cardiac arrest as killing the patient
• removing a PVS patients organs for transplantation likewise should continue to be viewed as killing them
• such direct killing is morally dubious (compare active euthanasia)
• nevertheless it's morally permissible in the treatment of PVS patients to "allow them to die"
• by discontinuing all care (compare passive euthanasia)
• even "ordinary and routine care"  such as
• feeding
• hydration

Competent Adults and the Refusal of Life-Sustaining Treatment

• Distinction: 3 Types of Cases (admittedly rough & ready)
1. where a patient, by accepting life-sustaining treatment, would return to a state of health
• rough edge: How assuredly?
• refusal of treatment uncommon but "dramatic": e.g.,
• Jehovah's Witness who refuses a live-saving blood transfusion
• Christian Scientist who refuses a live-saving appendectomy
• Ruth Macklin argues -- on grounds of autonomy -- that such refusals should be allowed
2. where a patient, by accepting treatment, would prolong a severely compromised
• rough edge: how severely?
• refusal of treatment becoming increasingly more common
• example: a severe arthritis sufferer who refuses treatment for her pneumonia
• successful treatment will fully restore her to her previous highly impaired & painful condition
• which is nevertheless not a terminal condition
• so it's not just "prolonging the dying process"
• controversy
• favoring condoning such refusal: considerations of autonomy
• reservations about condoning such refusal: based on reluctance to recognize "quality of life" factors as morally relevant
3. terminal illness: where a patient, by accepting treatment, would merely prolong the dying process (
• rough edges: How long?  Ain't life terminal?
• such refusal has a strong foundation in morality & law and is very common: where treatment would merely "prolong the dying process" mentally competent patients are generally recognized to have moral and legal rights to refuse such treatment
• example: a terminal cancer sufferer whose death can be postponed for a time by "aggressive treatment"
• Kantian -- autonomy based -- reasons to recognize such a right
• Utility-based reasons: may be highly questionable in such cases whether treatment is in the patient's best interest
• if it will lead to a more miserable and prolonged process of dying
• where less aggressive treatment -- or nontreatment -- might lead to a better death
• with less suffering
• and more awareness, communicative capacity, etc.
• Controversial Distinction: Types of Life-Sustaining Treatment
• "extraordinary means": mechanical respiration, kidney dialysis, surgery, antibiotics
• "ordinary means": nutrition and hydration, even if artificially delivered (e.g., by IV)
• controversy
• some argue against allowing refusal of nutrition and hydration due to the symbolic connection of food and water with care and concern
• others (including the AMA Council on Ethical and Judicial Affairs) argue that nutrition and hydration are like any other treatment
• they may fail to provide sufficient benefit to warrant continuance
• and competent patients should be allowed to make this decision for themselves
• Controversial Distinction
• withholding life-sustaining treatment, i.e., never beginning it
• withdrawing life-sustaining treatment that is already underway
• controversy
• many physicians are more comfortable withholding than withdrawing
• AMA Council on Ethical and Judicial Affairs insists there is no ethically significant difference

Resuscitation Decisions, DNR Orders, and Judgments of Futility

• President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research
• patient self-determination should be the single most important factor in resuscitation decisions
• physician's assessment of benefit to the patient is also relevant
• proposes guidelines for balancing these factors in variety of cases
• of competent patients (summarized in Table 1 on p. 339)
• of incompetent patients (summarized in Table 2 on p. 340)
• Tomlinson & Brody: Rationales for DNR orders
• rationales involving quality of life judgments
• since such judgments must ultimately made by the patient (or their family if the patient is incompetent)
• it's wrong for physician to write a DNR order in such cases without the patient (or their surrogate's) permission
• the rationale that resuscitation would almost certainly be futile
• such judgments fall within the purview of the physicians expertise
• and are most appropriately left to the physician alone
• physicians are not obligated to provide treatments they consider futile even if patients (or their surrogates) desire them
• Mark Wicclair: judgments of "futility" are not purely objective but always involve an evaluative component

Advance Directives and Treatment Decisions for Incompetent Adults

• Advance Directives
• rationale
• terminal illness, treatments, and the dying process may impair the decision-making capacities of the terminally ill patient
• advance directives provide a reliable way for the patient to make their wishes know to the physician and their families while their decision-making capacities are still unimpaired
• two types of directives
1. instructional directives wherein
• a person specifies instructions about care desired
• in case their decision-making capacities become impaired
• when it deals with decisions regarding withholding of life-sustaining treatment, such instructional directives are commonly known as "living wills"
2. proxy directives wherein
• a person specifies a surrogate to make health-care decisions for them
• in the event their decision-making capacities become impaired
• the legal mechanism for executing a proxy directive is called a "durable power of attorney" for health care
• not the same as financial "durable power of attorney"
• my wife's families case
• reasons for choosing a proxy directive over or in addition to an instructional directive
• written directives can be ambiguous
• foreseeing all the contingencies that might arise is next to impossible
• Surrogate Decision makers obligations
• where instructional directives exist, follow them
• where no such directives exist or are unclear apply the substituted judgment standard
• make the decision the patient would have made
• given their values and preferences
• if they had been able to choose
• where the substitute judgment standard yields no clear guidance apply the best-interests standard
• make the decision that a rational person would choose
• in the patient's circumstances
• Difficulties with Living Wills and other Instructional Directives
• The Patient Self-Determination Act passed by Congress in October of 1990 requires all health-care institutions receiving federal funds to inform their patients of their rights to formulate advance directives.
• Worries about the force, construction, and implementation of such directives
• commonly "living will" provisions only become active upon a diagnosis of "terminal illness"
• excludes PVS patients
• excludes extreme dementia patients (e.g., advanced Alzheimer's sufferers)
• problem: it might be my wish not to linger on in a PVS but that wish would not be accommodated under the provisions of such a living will.
• other directives speak of "reasonable expectation of regaining a meaningful quality of life"
• but what's reasonable?
• and what quality of life counts as "meaningful"
• Issue: Is refusal to follow the provisions of a patient's instructional directive ever justified?
• might be good reason to think the patient would not have wanted a certain provision to be followed -- e.g. no mechanical ventilation -- if they had anticipated the actual circumstances that have arisen.
• "past wishes vs. present interest problems"
• example
• someone who has stipulated that no life-sustaining measures are to be performed if they become severely demented
• but they have become severely but "pleasantly demented"
• their life seems enjoyable to them as it is
• even such as it is
• upshot: life-sustaining treatment may be in their present best interests though incompatible with their past wishes
• Joanne Lynn: "Why I Don't Have a Living Will": It's not for everyone.
• two groups of patients unsympathetic to providing advance directives
1. those who are uneasy about the very prospect of making choices that may impact the length of their lives
2. those who would simply prefer to entrust the decision-making to family or friends should the need arise
• nevertheless there are "four good uses for advance directives"
1. cases where a patient would be well-served by executing a durable power of attorney of health care
2. to document unusual or very specific preferences
3. to alleviate patient and family anxieties
4. as a focal point for organizing discussion of the patient's priorities and preferences.