Ethical Decision-Making in End-of-Life Care

Dr. Maria Fidelis C. Manalo, MSc Palliative Care

Sanctity of Life
You shall not kill. You have heard that it was said to the men of old, "You shall not kill: and whoever kills shall be liable to judgment." But I say to you that every one who is angry with his brother shall be liable to judgment.

"Human life is sacred because from its beginning it involves the creative action of God and it remains for ever in a special relationship with the Creator, who is its sole end. God alone is the Lord of life from its beginning until its end: no one can under any circumstance claim for himself the right directly to destroy an innocent human being.“
Catechism of the Catholic Church, 2258

Stewardship of Life
In this view, we are stewards, not owners, of our own bodies and are accountable to God for the life that has been given to us.

Human life as a value
Life, however, is not an absolute value. The Christian understanding of life’s meaning and purpose is founded on a belief in the resurrection of Christ and the hope of an afterlife. We have a duty to preserve our life and to use it for the glory of God, but the duty to preserve life is not absolute.

Care for the Sick
Those whose lives are diminished or weakened deserve special respect. Sick or handicapped persons should be helped to lead lives as normal as possible.
Catechism of the Catholic Church, 2276

Euthanasia
Consists of an act or omission which, of itself or by intention, causes death in order to eliminate suffering Constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator.

The death caused by euthanasia is not part of the natural process of dying of a terminally ill person. Whatever its motives and means, direct euthanasia consists in putting an end to the lives of handicapped, sick, or dying persons. It is morally unacceptable.
Catechism of the Catholic Church, 2277

Medicalized killing
Medicalized killing of a person without the person’s consent, whether nonvoluntary (where the person is unable to consent) or involuntary (against the person’s will), is not euthanasia: it is murder. Hence, euthanasia can be voluntary only.
Materstvedt et al, Palliative Medicine 2003

Euthanasia & Physician Assisted Suicide
Euthanasia is killing on request and is defined as a doctor intentionally killing a person by the administration of drugs, at that person’s voluntary and competent request. Physician-assisted suicide is defined as a doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that person’s voluntary and competent request.
Materstvedt et al, Palliative Medicine 2003

Foregoing Extraordinary Means to Prolong the Life of a Dying Patient
Foregoing extraordinary means to sustain life is different from euthanasia on several main points: Unlike euthanasia, foregoing extraordinary means is not intended to cause death. The death that follows from foregoing extraordinary means was not induced or directly caused. The death simply follows from the natural process of dying that is no longer postponed by extraordinary means.

Foregoing Extraordinary Means to Prolong the Life of a Dying Patient
Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate It is the refusal of "over-zealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.
Catechism of the Catholic Church, 2278

Foregoing Extraordinary Means to Prolong the Life of a Dying Patient
Determining whether a treatment is ordinary or extraordinary depends upon the balance between two sets of factors. On one hand, we have to consider the physical, psychological, economic and other harm which a given modality of treatment is expected to cause, first of all, to a patient, but also to his or her relatives and friends as well as to society.

Foregoing Extraordinary Means to Prolong the Life of a Dying Patient
On the other hand, we have to take into account the degree of probability, if any, first of all, that the patient will be cured or will be able, for a significant period of time, to live on under humanizing conditions. If the good outweighs the harm, then it can be reasonably affirmed that the means is morally ordinary (“proportionate”). If the harm outweighs the good, then disproportion probably exists and means is probably morally extraordinary.

Foregoing Extraordinary Means to Prolong the Life of a Dying Patient
Extraordinary means usually refer to highly specialized, physically difficult, psychologically draining or very expensive measures used in order to delay the imminent death and prolong the life of the dying patient. These extraordinary means no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family.

Care for the Terminally-ill
Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable Palliative care is a special form of disinterested charity. As such it should be encouraged.
Catechism of the Catholic Church, 2279

Palliative Sedation vs. Euthanasia
In terminal or palliative sedation of those imminently dying:
The intention is to relieve intolerable suffering The procedure is to use a sedating drug for symptom control The successful outcome is the alleviation of distress

In euthanasia:
The intention is to kill the patient The procedure is to administer a lethal drug The successful outcome is immediate death
Materstvedt et al, Palliative Medicine 2003

Palliative Sedation
In palliative care, mild sedation may be used therapeutically but in this situation it does not adversely affect the patient’s conscious level or ability to communicate. The use of heavy sedation (which leads to the patient becoming unconscious) may sometimes be necessary to achieve identified therapeutic goals. However, the level of sedation must be reviewed on a regular basis and in general used only temporarily. It is important that the patient is regularly monitored.

The Use of Painkillers That May Shorten the Life of a Terminally-ill Patient
It is licit to relieve pain by narcotics, even when the result is decreased consciousness and a shortening of life, "if no other means exist, and if, in the given circumstances, this does not prevent the carrying out of other religious and moral duties." In such a case, death is not willed or sought, even though for reasonable motives one runs the risk of it: there is simply a desire to ease pain effectively by using the analgesics which medicine provides. (Evangelium Vitae, 65)

Advance Directives and End-of-Life Decisions

Dr. Maria Fidelis C. Manalo, MSc Palliative Care

Purpose
Discuss advance directives and end-of-life care decisions Learn the different types of advance directives Recognize advantages and disadvantages of advance directives Learn the ethical principles that guide end-of-life care and decisions, especially withholding and withdrawing therapy

What rights do patients have regarding their medical treatment?
Patients are entitled to complete information about their illness and how it may affect their lives, and they have the right to share or withhold that information from others. Patients should also be informed about any procedures and treatments that are planned, the benefits and risks, and any alternatives that may be available.

What rights do patients have regarding their medical treatment?
Patients have the right to make decisions about their own treatment. These decisions may change over time. In the face of worsening disease, some patients may want to try every available drug or treatment in the hope that something will be effective. Other patients may choose to forgo aggressive medical treatment.

What rights do patients have regarding their medical treatment?
Many patients turn to family members, friends, or caregivers for advice. But it is the patient's decision how much or how little treatment to have. Sometimes a patient is unable to make this decision, due to severe illness or a change in mental condition. That is why it is important for people with life-limiting illnesses to make their wishes known in advance.

End-of-life care
A general term that refers to the medical and psychosocial care given in the advanced or terminal stages of illness.

What are Advance Directives?
Legal documents, such as the living will, durable power of attorney and health care proxy, which allow people to convey their decisions about end-of-life care ahead of time. Provide a way for patients to communicate their wishes to family, friends, and health care professionals and to avoid confusion later on, should they become unable to do so.

Advance Directives
Ideally, the process of discussing and writing advance directives should be ongoing, rather than a single event. Advance directives can be modified as a patient's situation changes. Even after advance directives have been signed, patients can change their minds at any time.

Why are advance directives important?
Complex choices about end-of-life care are difficult even when people are well. If a person is seriously ill, these decisions can seem overwhelming. But patients should keep in mind that avoiding these decisions when they are well will only place a heavier burden on them and their loved ones later on. Communicating wishes about end-of-life care will ensure that people with life-limiting illness face the end of their lives with dignity and with the same values by which they have lived.

What is a Living Will?
A living will is a set of instructions documenting a person's wishes about medical care intended to sustain life. It is used if a patient becomes terminally ill, incapacitated, or unable to communicate or make decisions. Everyone has the right to accept or refuse medical care. A living will protects the patient's rights and removes the burden for making decisions from family, friends, and physicians.

What is a Living Will?
There are many types of life-sustaining care that should be taken into consideration when drafting a living will. These include:
the use of life-sustaining equipment (dialysis machines, ventilators, and respirators); "do not resuscitate" orders; that is, instructions not to use CPR if breathing or heartbeat stops; artificial hydration and nutrition (tube feeding); withholding of food and fluids; palliative/comfort care; and organ and tissue donation.

What is a Living Will?
It is also important to understand that a decision not to receive "aggressive medical treatment" is not the same as withholding all medical care. A patient can still receive antibiotics, nutrition, pain medication, radiation therapy, and other interventions when the goal of treatment becomes comfort rather than cure.
This is called palliative care, and its primary focus is helping the patient remain as comfortable as possible.

What is a Living Will?
Patients can change their minds and ask to resume more aggressive treatment. If the type of treatment a patient would like to receive changes, however, it is important to be aware that such a decision may raise insurance issues that will need to be explored with the patient's health care plan. Any changes in the type of treatment a patient wants to receive should be reflected in the patient's living will.

What is a Living Will?
Once a living will has been drawn up, patients may want to talk about their decisions with the people who matter most to them, explaining the values underlying their decisions. In the US, most states require that the document be witnessed.

What is a Living Will?
Then it is advisable to make copies of the document, place the original in a safe, accessible place, and give copies to the patient's doctor, hospital, and next of kin. Patients may also want to consider keeping a card in their wallet declaring that they have a living will and where it can be found.

History of the "living will"
The "living will" was originally invented in 1967 by two groups, the Euthanasia Society of America and Euthanasia Education Council, and was touted as a first step in gaining public acceptance of euthanasia. These groups had been struggling for years to get "mercy-killing" bills (which would allow doctors to give disabled or dying patients lethal overdoses) passed in various state legislatures.

Resisting the new "Death Ethics"
Even Catholic hospitals and nursing homes now offer some kind of "living will" and most people falsely assume that such directives are automatically compatible with Church teaching. While it has always been true that futile or excessively burdensome treatment or care can morally be refused, the Catholic Church has long condemned causing or hastening death, whether by omission or commission.

POPE JOHN PAUL II :
Clarify the substantive moral difference between Discontinuing medical procedures that may be burdensome, dangerous, or disproportionate to the expected outcome
> "the refusal of 'over-zealous' treatment"

DISEASE

Taking away the proportionate means of preserving life, such as ordinary feeding, hydration, DEATH and normal medical care

Living Will
However, no "living will" is risk-free and even refusing to sign a "living will" is no guarantee that the "right to die" will not be exercised for the patient despite his/her wishes. The best defense now is to have a loving relative or friend who is informed about ethical options and who can legally speak for the patient if he/she cannot because of illness or injury. It is also crucial that the patient chooses a doctor without a "right to die" bias, preferably one with a good understanding of Catholic ethical principles and Natural Moral Law.

What is a Medical Power of Attorney?
A legal form that states who the patient wants to make decisions about medical care The person is authorized to speak for the patient ONLY if the patient is unable to make his/her own medical decisions May also be called: "health care proxy or agent" “health care surrogate” "durable power of attorney for health care"

Withholding, Withdrawing Life-Sustaining Treatment
RICHARD J. ACKERMANN, M.D. Am Fam Physician. 2000 Oct 1;62(7):1555-1560.

Adapted from Education for Physicians on End-of-Life Care Trainer's Guide, Module 11, withholding, withdrawing therapy. In: Emanuel LL, von Gunten C J, Ferris FD. Education for physicians on end-of-life care/Institute for Ethics at the American Medical Association. Chicago, IL: EPEC Project, The Robert Wood Johnson Foundation, 1999.

Any life-sustaining treatment…
Resuscitation (CPR) Elective intubation, mechanical ventilation Surgery Dialysis, Hemofiltration Blood transfusions, blood products Diagnostic tests Artificial nutrition, (parenteral or enteral) or hydration (IVF) Antibiotics Vasopressors Future hospital, ICU admissions

…aimed at maintaining organ function that only prolong death may be withdrawn or withheld

8-step protocol to discuss treatment preferences . . .
1. Be familiar with policies, statutes 2. Appropriate setting for the discussion 3. Ask the patient, family what they understand 4. Discuss general goals of care

. . . 8-step protocol to discuss treatment preferences
5. Establish context for the discussion 6. Discuss specific treatment preferences 7. Respond to emotions 8. Establish and implement the plan

Aspects of informed consent
Problem treatment would address What is involved in the treatment / procedure What is likely to happen if the patient decides not to have the treatment Treatment benefits Treatment burdens

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