MAKING DECISIONS AT THE END OF LIFE FATHER EARL K. FERNANDES, STD DEAN, ATHENAEUM OF OHIO ASSISTANT PROFESSOR OF MORAL THEOLOGY UNIVERSITY OF DAYTON MARCH 15, 2014

Ordinary and Extraordinary Treatment: Why the distinction? Although some acts such as euthanasia are always wrong, it is not always wrong to cease treatments, to not begin treatments, or to allow someone to die. The distinction between ordinary and extraordinary means helps determine whether such treatments are obligatory (ordinary) or non-obligatory (extraordinary).

Ordinary and Extraordinary Treatment: The Use of Language In medicine, a means is considered ordinary if it is: Scientifically-established Statistically Successful Reasonably Available

Ordinary and Extraordinary Treatment: The Use of Language In Catholic Moral Theology, no medical therapy may be judged ordinary or extraordinary until the two questions have been answered: Does the therapy offer hope of benefit for this patient? Is it an excessive burden to this patient? Other important considerations Not the cause of Horror or Repulsion [Cost?]

Ordinary and Extraordinary Treatment: Catholic usage Ordinary means refers to treatments that are more beneficial to the patient than burdensome. Extraordinary means refers to treatments in which the benefits do not exceed the burdens of treatment. Sometimes people use the terms “proportionate” or “disproportionate”.

Ordinary and Extraordinary Treatment: Catholic usage When is medical treatment beneficial and, therefore, obligatory? To the degree that it prolongs life, cures, restores function, relieves symptoms, alleviates pain and engenders physical or psychological well-being. To be obligatory, the benefits must outweigh the burdens.

Ordinary and Extraordinary Treatment: Catholic usage When is medical treatment beneficial and, therefore, obligatory? Declaration on Euthanasia (1980): Offers a Hope of Benefit Is in common use Is according to one’s status Is not difficult to use Is not unreasonable

Ordinary and Extraordinary Treatment: Catholic usage What then makes a treatment burdensome? Some treatments are psychologically repugnant, too physically painful, unlikely to succeed, unlikely to provide significant benefit, experimental, and difficult to administer. Cost can be a legitimate and serious consideration. Side effects

Ordinary and Extraordinary Treatment: Catholic usage In determining the continuation of a treatment, physicians must assess the benefits and burdens of treatments with respect to the particular patient. The question is whether the procedure is worthwhile, not whether the person or the person’s quality of life is worthwhile.

Ordinary and Extraordinary Treatment: Catholic usage If the treatment is unduly burdensome for a patient, then that treatment is considered to be extraordinary for that patient. The patient may refuse to continue it or to begin it, even if death is a foreseeable consequence. If the benefits of a treatment outweigh the burdens of treatment for the particular patient, then such treatment is ordinary and obligatory.

Ordinary and Extraordinary Treatment: Who decides? The doctor? The doctor assists the patient in her or his duty to promote their health—not assuming the primary decision maker. The physician is deeply involved because the decision must consider the patient’s medical condition as well as determine the medical prognosis: Whether the procedure in question will (1) cure; (2) help appreciably or (3) have no effect on the dying patient. The doctor’s rights regarding treatment decisions—to take action---are only those granted him or her by the patient (Pius XII, 1952)

Ordinary and Extraordinary Treatment: Who decides? “Only the patient or the family can decide these circumstances. Hence, the radical right to make a decision on what would be an ordinary means and what would be an extraordinary means from an ethical point of view belongs to the patient.”

The Incompetent Patient In the case of a patient who is incompetent to decide for herself or himself, others must make the decision, keeping in mind the “right to life” of the patient—his or her human dignity and human rights. The key: This decision is for the best interest of the patient, not the over- burdened family, etc.

The Incompetent Patient: Legal DocuMents Advanced Directives: can provide guidance for proxy decision makers and their physicians Advanced Directives require that a person think through possible medical scenarios and consider what sort of care they would desire. (Ex- Someone beginning to suffer from Alzheimers but who is still clearly mentally competent may wish to spend their days at home rather than be hospitalized.) An Advanced Directive can ensure that the incompetent patient’s ethical and religious beliefs are respected

The Incompetent Patient: LEGAL DOCUMENTS Legal documents in this situation: “Living Wills”: Sometimes people with living wills might not get proper care because they have not anticipated what situations might arise and have not provided directives. (Ex- Ventilator: “I never want to go on the vent.” The person may have been presuming permanently being on the vent; rather than a short time on the vent.)

The Incompetent Patient: LEGAL DOCUMENTS “Durable Power of Health Care Attorney”: Here a proxy decision-maker is designated. The person should be someone who understands the patient’s values and who can be trusted to make health-care decisions which respect those values. The most important criterion here is not blood relationship but values.

The Incompetent Patient: legal documents POLST (Physician Orders for Life Sustaining Treatment) POLST extends the decisions beyond CPR to include other measures including antibiotics and “artificially administered nutrition” Can apply to those who are not terminally ill: Terminally ill; Advanced Chronic Medical Condition; Chronic ( Ex- WA, OR) POLST orders supersede DNRs. POLST seeks to make patient wishes into an immediately actionable medical order. POLST requires the signature of a medical professional (usually).

The Incompetent Patient: LEGAL DOCUMENTS Cautions with POLST: There is not sufficient consideration of what is ordinary and proportionate. Antibiotics and assisted nutrition are considered end-of-life treatments May allow patients to mandate non-treatment in a way that constitutes voluntary euthanasia Exaltation of patient autonomy, which becomes the standard for medical care of patients who are chronically or terminally ill. The idea is that the patient’s wishes need to be carried out by the caregivers under all circumstances.

The Incompetent Patient: LEGAL DOCOUMENTS Cautions with POLST They may be implemented when the patient is not terminally ill. No patient signature is required on some forms. Patient signature is optional in Wisconsin, Oregon, and Montana They do not require the signature of the attending physician The order travels with the patient from one healthcare facility to another. Provides for standardized care but does not adjust/adapt to changing clinical situations. Requires caregivers in new settings to follow orders from clinicians at other institutions Sometimes POLST is administered by non-physician facilitators

The Incompetent Patient: LEGAL DOCUMENTS The orders are effective immediately. Living wills, for example, apply only when the patient is incapable of making decisions and when the patient develops a serious clinical problem Providers (and medical advisory boards) following POLST are immune from criminal, civil, or disciplinary action, and so the patient could be vulnerable to abuse/neglect – Lack of Oversight 7. The forms are overly simplistic for directing complicated decision making. Cannot account for medical contingencies A patient who is chronically ill may benefit from treatment with antibiotics or from limited cardiac monitoring without distress or expense

Polst AND THE AFFORDABLE CARE ACT PAY FOR PERFORMANCE: The Affordable Care Act (ACA) seeks to move physicians from a fee for service (billing model/pay for procedure) model to pay for performance. RESOURCES ARE THE ISSUE! GET THE HIGH UTILIZERS OUT OF THE SYSTEM! The physician will be judged by how many health care resources the patient uses. Re-admittance? Length of stay: Too Long

Polst AND THE AFFORDABLE CARE ACT PAY FOR PERFORMANCE: EX – Heart Failure/COPD [medically frail] patients will be encouraged not to utilize healthcare. Physicians & Other healthcare providers will have an incentive ($$$) to encourage non-utilization If someone is treated and readmitted for heart failure and is readmitted again within 60 days, there is no reimbursement/compensation. Physicians, Healthcare providers, counselor will be subtly pressured to talk about “end of life issues” at the office and will be compensated ($$$) for doing so.

Polst AND THE AFFORDABLE CARE ACT PAY FOR PERFORMANCE: Another example – Now a potentially reversible condition may be treated. Under the ACA, a patient might be asked: “Have you ever considered palliative care or hospice care?” The ACA tends to bias the counselor against treatment. Ex – NY mandates POLST for admission to nursing homes. Most POLST forms say: “No antibiotics/No Nutrition and Hydration”; thus, if a patient develops confusion or fever which could be easily treated, one may not treat because of the POLST.

Persistent Vegetative State For many years Catholic theologians have debated the proper (obligatory) care for patients in Persistent Vegetative State (PVS) or patients with persistent cognitive deprivation. Such patient’s are not “brain dead”; they lack cognitive awareness (reason).

Persistent Vegetative State Some argue that such people lack consciousness and can no longer interact with society. They argue that the person has ceased to exist when the capacity to reason has been effectively eliminated. Others simply argue that such patients’ lives are not worth living.

Persistent Vegetative State: Nutrition and Hydration Others do not enter into the quality of life issue. They believe in the dignity of the person. They assert that patients in PVS should be allowed to pursue the spiritual (Ultimate) good and that prolongation of life through nutrition and hydration prevents this. They argue that nutrition and hydration is not obligatory (ordinary) for these patients.

Nutrition and Hydration & PVS: John Paul II’s Allocution (2004) Pope John Paul II gave an allocution to the International Congress on “Life Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas,” on March 20, 2004.

Nutrition and Hydration & PVS: John Paul II’s Allocution (2004) “The sick person in a vegetative state, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed. He also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery.”

Nutrition and Hydration & PVS: John Paul II’s Allocution (2004) “I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.”

Nutrition and Hydration & PVS: John Paul II’s Allocution (2004) “… insofar as and until it is seen to have attained its proper finality”: The Pope is not claiming that food and water must be given in all circumstances. If a patient cannot assimilate food and water, then there is not strict obligation to administer them. If a patient is imminently dying and his bodily system can no longer make use of nutrition and hydration, there is no need to provide food and water to them.

Nutrition and Hydration & PVS: John Paul II’s Allocution (2004) “The obligation to provide the "normal care due to the sick in such cases" includes, in fact, the use of nutrition and hydration. The evaluation of probabilities, founded on waning hopes for recovery when the vegetative state is prolonged beyond a year, cannot ethically justify the cessation or interruption of minimal care for the patient, including nutrition and hydration. Death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission.” John Paul II did not speak of nutrition and hydration as treatment but as basic care.

Nutrition and Hydration & PVS: USCCB Dubia Some questioned the weight of the Allocution and its teaching. Some argued that the speech was written for a particular audience by a “ghost writer”. The USCCB presented dubia to the Congregation for the Doctrine of the Faith. These received a response on Aug 1, 2007.

Nutrition and Hydration & PVS: USCCB Dubia First question: Is the administration of food and water (whether by natural or artificial means) to a patient in a “vegetative state” morally obligatory except when they cannot be assimilated by the patient’s body or cannot be administered to the patient without causing significant physical discomfort? Response: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.

Nutrition and Hydration & PVS: USCCB Dubia Second question: When nutrition and hydration are being supplied by artificial means to a patient in a “permanent vegetative state”, may they be discontinued when competent physicians judge with moral certainty that the patient will never recover consciousness? Response: No. A patient in a “permanent vegetative state” is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.

Nutrition and Hydration & PVS: Ethical and Religious Healthcare Directives The Ethical and Religious Directives were revised in 2009 to bring them into conformity with the statements of the JP II and the CDF: “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g.- the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care.”

What does the 5th ed. Of the Directives say? Nutrition and Hydration & PVS: Ethical and Religious Healthcare Directives What does the 5th ed. Of the Directives say? “Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be “excessively burdensome for the patient or [would] cause significant physical discomfort, for example resulting from complications in the use of the means employed.””

What does the 5th ed. Of the Directives say? Nutrition and Hydration & PVS: Ethical and Religious Healthcare Directives What does the 5th ed. Of the Directives say? “For instance, as a patient draws close to inevitable death from an underlying progressive and fatal condition, certain measures to provide nutrition and hydration may become excessively burdensome and therefore non- obligatory in light of their very limited ability to prolong life or provide comfort.”