Treatment Concerns - Definitions / Living Wills / Palliative Care / Terminal or Excessive Sedation / Organ Donation / DCD or NHBD / Hospice / POLST / DNR

End of Life Care Decisions? What to Do?…Do No Harm

"The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him: their undue suspension could be real and properly so-called euthanasia."

Decisions affecting treatment and care at the end of a person's life can present extraordinary difficulties for those involved.

The moral responsibility of self-preservation obliges everyone to use the normal means the medicine can offer for preserving one's life.

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END OF LIFE WEBSITES
Prenatal Partners For Life – support for parents of babies with severe problems
www.prenatalpartnersforlife.org
Chart of State Laws Regarding End Of Life Care
http://www.nrlc.org/euthanasia/willtolive/mapgraphic.pdf
The Will to Live Project
http://www.nrlc.org/euthanasia/willtolive/index.html
http://www.nrlc.org/euthanasia/willtolive/StatesList.html

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The public recognition of issues about treatment and care at the end of life has made almost everyone aware, if not fearful, of the possibility of becoming dependent upon other people and technological help to sustain one's life when a life-threatening condition befalls oneself or a loved one.

The impending sense of loss can become entwined with other emotions surrounding serious questions about appropriate care of the seriously ill or dying person. Since many families do not discuss these matters beforehand, decisions often have to be made when the result is a matter of life and death. There are many questions that could be clarified beforehand by a loving and frank discussion within the family.

Many people make statements about not wanting to be "put on a tube" or "hooked up to a machine." They fear that their lives will be prolonged needlessly when there is no chance of getting better, an idea that has been planted in many minds by supporters of euthanasia. Other times people make these statements because they do not want to "be a burden" to the rest of their family or to a particular relative who will have the most responsibility for their care.

How many people will make decisions to forgo treatment because they think the requirements of caring for them will be too much of an inconvenience upon their children or other close relatives? A little bit of concern…to those we are close to can make a difference in assuring that loved ones live and, when the time comes, die surrounded by love.

Hospitals and other health-related institutions are required to make inquiries of a person about future treatment decisions when that person is admitted. This is one way people become acquainted with the practical realities of what are called "advance directives" or "advance declarations" for health care.

Usually, the hospital forms appear to be quite simple and straightforward since the person is asked just to mark the form beside each type of treatment that one would like to refuse. For example, the form typically provides the person with the opportunity to refuse, in advance, such things as cardio-pulmonary resuscitation, dialysis, ventilator, insulin and antibiotics….No one is required to check anything off the form and can request all beneficial treatment.

The hospital is directed not to provide any kind of treatment the patient marks off, usually without regard to the moral circumstances that are involved in the case. Failure to provide any of these can and usually will result in the patient's death. These are the same kinds of questions that are covered by the so-called "Living Will"…

[H]ealth care professionals will [usually] try diligently to conform to the wishes of the patient or the person who is making decisions for the patient. However, in some family cases, members disagree among themselves or with hospitals over the level of care to be given. Some of the more troubling cases end up being decided by courts. Often these situations can be avoided by discussions with one's family and physician.

At the same time, though, consumers of medical services should be aware that more health care providers are willing to disagree with patients or their family members, especially when the physician and hospital agree that a treatment should not be given even if the family would like it.

More hospitals are adopting policies known as "medical futility" policies to give them the legal right to refuse treatment to a patient because they do not think the patient will benefit from it. This can be based on the judgment of medical personnel that the patient's quality of life will not be sufficient after the treatment to merit prolonging the life of the patient.

Some Guidelines
• Euthanasia is an action or omission which by its nature or by intention causes death…

Nothing and no one can in any way permit the killing of an innocent human being, whether a fetus or embryo, an infant or an adult, an old person, one suffering from an incurable disease or a person who is dying. Furthermore, no one is permitted to ask for this act of killing, either for himself or herself or for another person entrusted to hi

s or her care, nor can he or she consent to it, either explicitly or implicitly.

The moral responsibility of self-preservation obliges everyone to use the normal means that medicine can offer for preserving one's life.

• It is permissible to make do with the normal means that medicine can offer. Therefore 'one cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide.

• If there are no other sufficient remedies, it is permitted, with the patient's consent, to have recourse to the means provided by the most advanced medical techniques, even if these means are still at the experimental stage and are not without a certain risk. By accepting
them, the patient can show generosity in the service to humanity. It is also permitted with the patient's consent to interrupt these means where the results fall short of expectation.

• Discontinuing medical procedures that are burdensome, dangerous, extraordinary or disproportionate to the expected outcome can be legitimate.

When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.

• Even if death is thought imminent, the ordinary care owed to a sick person cannot legitimately be interrupted.

Persons who are faced with difficult medical care decisions should make a great effort to know and understand the patient's condition and to get whatever assistance one needs in doing so. When a difficult decision must be made and there is a lack of clarity about what prudence dictates in a case, the moral responsibility of self-preservation obliges everyone to use the normal means that medicine can offer for preserving one's life.

[“End-of-Life Health Care Decisions are Difficult”, Supplement to the St. Louis Review 3Oct03; Edward J.. Richard, MS; Pro-Life Office, (314) 792-7555. See The Charter for Health Care Workers, 1994: http://www.wf-f.org/healthcarecharter.html. Richard has doctorate degrees in law and moral theology & is associate professor of moral theology.]

The Charter for Health Care Workers, 1995
Research and experimentation

…75. A therapeutic action which is apt to be increasingly beneficial to health is for that very reason open to new investigative possibilities. These are the result of a progressive and ongoing activity of research and experimentation, which thus succeeds in arriving at new medical advances.

To proceed by way of research and experimentation is a law of every applied science: scientific progress is structurally connected with it. Biomedical sciences and their development are subject to this law also. But they operate in a particular field of application and observation which is the life of the human person.

The latter, because of his unique dignity, can be the subject of research and clinical experimentation with the safeguards due to a being with the value of a subject and not an object. For this reason, biomedical sciences do not have the same freedom of investigation as those sciences which deal with things. "The ethical norm, founded on respect for the dignity of the person, should illuminate and discipline both the research stage and the application of the results obtained from it."159

76. In the research stage, the ethical norm requires that its aim be to "promote human well-being."160 Any research contrary to the true good of the person is immoral. To invest energies and resources in it contradicts the human finality of science and its progress.161

In the experimental stage, that is, testing the findings of research on a person, the good of the person, protected by the ethical norm, demands respect for previous conditions which are essentially linked with consent and risk.

77. First of all, the consent of the patient. He "should be informed about the experimentation, its purpose and possible risks, so that he can give or refuse his consent with full knowledge and freedom. In fact, the doctor has only that power and those rights which the patient himself gives him."

This consent can be presumed when it is of benefit to the patient himself, that is, when there is a question of therapeutic experimentation.

78. Secondly, there is the risk factor. Of its nature, every experimentation has risks. Hence, "it cannot be demanded that all danger and all risk be excluded. This is beyond human possibility; it would paralyze all serious scientific research and would quite often be detrimental to the patient…. But there is a level of danger that the moral law cannot allow."

A human subject cannot be exposed to the same risk as beings which are not human. There is a threshold beyond which the risk becomes humanly unacceptable. This threshold is indicated by the inviolable good of the person, which forbids him "to endanger his life, his equilibrium, his health, or to aggravate his illness."

79. Experimentation cannot be begun and generalized until every safeguard has been put in place to guarantee the harmlessness of the intervention and to lessen the risk. "The pre-clinical basic phase, carried out carefully, should give the widest documentation and the most secure pharmacological-toxicological guarantees and ensure operational safety."

To acquire th

ese assurances, if it be useful and necessary, the testing of new pharmaceutical products or of new techniques should first be done on animals before they are tried on humans. "It is certain that the animal is for the service of man and can therefore be the object of experimentation. However, it should be treated as… meant to cooperate in man's good but not to be abused." It follows that all experimentation "should be carried out with consideration for the animal, without causing it useless suffering."

When these guarantees are in place, in the clinical phase experimentation on the human person must be in accord with the principle of proportionate risk, that is, of due proportion between the advantages and foreseeable risks.

Here a distinction must be made between experimentation on a sick person, for therapeutic reasons, and on a healthy person, for scientific and humanitarian reasons.

80. In experimentation on a sick person, due proportion is attained from a comparison of the condition of the sick person and the foreseeable effects of the drugs or the experimental methods. Hence the risk rate which might be proportionate and legitimate for one patient may not be so for another.

It is a valid principle — as already said — that "in the absence of other remedies, it is licit to have recourse, with the consent of the patient, to means made available by the most advanced medicine, even if they are still at an experimental stage and are not without some risk. By accepting them the patient might also give an example of generosity for the benefit of humanity." But there must always be "great respect for the patient in the application of new therapy still at the experimental stage … when these are still high-risk procedures."

"In desperate cases, when the patient will die if there is no intervention, if there is a medication available, or a method or an operation which, though not excluding all danger, still has some possibility of success, any right-thinking person would concede that the doctor could certainly, with the explicit or tacit consent of the patient, proceed with the application of the treatment."

81. Clinical experimentation can also be practiced on a healthy person, who voluntarily offers himself "to contribute by his initiative to the progress of medicine and, in that way, to the good of the community". In this case, "once his own substantial integrity is safeguarded, the patient can legitimately accept a certain degree of risk."

…In any case, it is a duty to always interrupt the experimentation when the results disappoint the expectations.

117. A terminally ill person should be given whatever medical assistance helps to alleviate the pain accompanying death. This would include the so-called palliative or symptomatic treatment.

The most important assistance is "loving presence" at the bedside of the dying person. There is a proper medical-health presence which, though not deceiving him, makes him feel alive, a person among persons, because he is receiving, like every being in need, attention and care. This caring attention gives confidence and hope to the patient and makes him reconciled to death. This is the unique contribution which doctors and nurses, by their being human… — more than by their expertise — can and should make to the dying person, so that rejection becomes acceptance and anguish gives way to hope.

In this way human dying is withdrawn from the phenomenon of "being overly medicalized", in which the terminal phase of life "takes place in crowded and activity-dominated environments, controlled by medical health personnel whose principal concern is the biophysical aspect of the illness". All of this "is being seen increasingly as disrespectful to the complex human state of the suffering person."

118. "Before the mystery of death we are powerless; human certainties waver. But it is precisely in the face of such a checkmate that….What seems meaningless takes on meaning and worth."

When this "checkmate" takes place in the life of a person, in this decisive hour of his existence, the witness of the health care worker's faith and hope…has a determining role. It displays new horizons of meaning, that is, of resurrection and life, to the one who sees the prospects of earthly existence being closed to him…To make faith and hope present is for doctors and nurses the highest form of humanizing death. It is more than alleviating a suffering…

Death with dignity

119. The right to life is specified in the terminally ill person as "a right to die in total serenity, with human…dignity."

This cannot be interpreted as the power to kill oneself or to give this power to others, but to experience dying in a human…way and not flee from it "at any cost". This right is being explicitly expressed by people today in order to safeguard themselves at the point of death against "the use of techniques that run the risk of becoming abusive."

Contemporary medicine, in fact, has at its disposal methods which artificially delay death, without any real benefit to the patient. It is merely keeping one alive or prolonging life for a time, at the cost of further, severe suffering. This is the so-called "therapeutic tyranny", which consists "in the use of methods which are particularly exhausting and painful for the patient, condemning him in fact to an artificially prolonged agony."

This is contrary to the dignity of the dying person and to the moral obligation of accepting death and allowing it at last to take its course. "Death is an inevitable fact of human life": it cannot be uselessly delayed, fleeing from it by every means.

120. Aware that he is "neither the lord of life nor the conqueror of death", the health care worker, in evaluating means, "should make appropriate choices, that is, relate to the patient and be guided by his real condition."

Here he will apply the principle — already stated — of "appropriate medical treatment", which can be specified thus: "When inevitable death is imminent, despite the means used, it is lawful in conscience to decide to refuse treatment that would only secure a precarious and painful prolongation of life, but wi

thout interrupting the normal treatment due to the patient in similar cases. Hence the doctor need have no concern; it is not as if he had failed to assist the person in danger."

The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him: their undue suspension could be real and properly so-called euthanasia.

121. For the doctors and their assistants it is not a question of deciding the life or death of an individual. It is simply a question of being a doctor, that is, of posing the question and then deciding according to one's expertise and one's conscience regarding a respectful care of the living and the dying of the patient entrusted to him. This responsibility does not always and in all cases involve recourse to every means. It might also require the renunciation of certain means to make way for a serene…acceptance of death which is inherent in life. It might also mean respect for the wishes of the patient who refuses the use of such means.

The use of painkillers for the terminally ill

122. Among the medicines administered to terminally ill patients are painkillers. These, which help to make the course of the illness less dramatic, contribute to the humanization and acceptance of death.

This, however, does not constitute a general norm of behavior. "Heroic behavior" cannot be imposed on everyone. And then, very often, "pain diminishes the moral strength" of the person: sufferings "aggravate the state of weakness and physical exhaustion, impeding the impulse of the spirit and debilitating the moral powers instead of supporting them. The suppression of pain, instead, brings organic and psychic relief…"

"Human…prudence suggests the use for most patients of medicines which alleviate or suppress pain, even if this causes torpor or reduced lucidity. With regard to those who are unable to express their wishes, one can reasonably suppose that they wish to take painkillers and these can be administered according to medical advice."

The use of painkillers with the dying, however, is not without its problems.

123. First, their use might have the effect, of not only alleviating pain, but also of hastening death.

When "proportionate reasons" so require, "it is permitted to use with moderation narcotics which alleviate suffering, but which also hasten death." In this case "death is not intended or sought in any way, although there is a risk of it for a reasonable cause: what is intended is simply the alleviation of pain in an effective way, using for that purpose those painkillers available to medicine."

124. There is also the possibility that painkillers will cause unconsciousness in the dying person. This use must receive special consideration.

"Without serious reasons, the dying person must not be deprived of consciousness."
 Sometimes the systematic use of narcotics which reduce the consciousness of the patient is a cloak for the frequently unconscious wish of the health care worker to discontinue relating to the dying person. In this case it is not so much the alleviation of the patient's suffering that is sought as the convenience of those in attendance. The dying person is deprived of the possibility of "living his own life", by reducing him to a state of unconsciousness unworthy of a human being. This is why the administration of narcotics for the sole purpose of depriving the dying person of a conscious end is "a truly deplorable practice."

It is a different matter when there is a serious clinical case for the administration of analgesics which suppress consciousness, as when there is violent and unbearable pain. In this case the anesthetic is said to be licit, provided certain conditions are fulfilled: that the dying person has fulfilled or could still fulfill his moral, family and religious obligations.249

Telling the truth to a dying person

125. Telling the truth about the diagnosis and prognosis to the dying person, and more generally to those suffering from an incurable illness, poses a problem of communication.

To inform someone that they are dying is difficult and dramatic, but this is not an exemption from being truthful. Communication between a dying person and those in attendance cannot be based on pretense. This is never a human possibility for the dying person and does not contribute to the humanization of dying.

The person has a right to be informed of their condition. This right is not lessened where there is a diagnosis and prognosis of a terminal illness, rather, it is heightened.

This information, in fact, is linked to important responsibilities which cannot be delegated to another. There are responsibilities bearing on the treatment to be applied with the informed consent of the patient.

With the approach of death comes the responsibility to fulfill certain duties in one's relationship with the family, settling possible legal matters, resolving obligations to a third party…

The person cannot be abandoned to unconsciousness in the decisive "hour" of his life, taking him away from himself and from his final and most important decisions. "Death is too essential a moment for its prospect to be avoided."250

126. The duty of being truthful with the terminally ill patient demands discernment and human tact on the part of medical personnel.

It cannot consist of a detached and indifferent communication of the diagnosis and relevant prognosis. The truth must not remain unspoken, but neither must it be given in all its bare, crude reality. It should be given in line with love and charity, calling all those who assist the patient in various ways to be attuned to this [relationship].

There is the need to establish a relationship of trust, receptivity and dialogue with the patient, seeking the appropriate time and words. There is a way of speaking that is discerning and respectful of the patient's moods, and it should be in harmony with these. There is a form of conversation wherein questions are ta

ctfully handled and even provoked, so that the patient is gradually brought to an awareness of his condition. If one tries to be present to the patient and sensitive to his lot one will find the words and the replies which make it possible to communicate in truth and in charity…

127. "Each case has its own requirements, depending on the sensitivity and ability of each person, of his or her relationship with the patient and the patient's condition; to provide for the patient's possible reactions (rebellion, depression, resignation, etc.), one will prepare oneself to face them calmly and tactfully."251 It is not the exactness of what is said that is important, but the relationship of solidarity with the patient. It is not simply a matter of giving clinical facts, but of meaningful communication.
In this relationship the prospect of death is not presented as inescapable, and it loses its anguishing power: the patient does not feel isolated and condemned to death. When the truth is presented to him in this way he is not left without hope, because it makes him feel alive in a relationship of sharing and communion. He is not alone with his illness: he feels truly understood, and he is at peace with himself and with others. He is himself as a person. His life, despite everything, has meaning, and dying unfolds with optimistic and transcendent meaning. [The Charter for Health Care Workers, 1994:
http://www.wf-f.org/healthcarecharter.html]

Two Sources of Advanced Directives which are Respectful of Human Life:
1. National Right to Life Committee –
http://www.nrlc.org/euthanasia/willtolive/index.html
[Free]  At the bottom of the page, click on "Download the Will to Live" for your state.

and the

2. International Task Force on Euthanasia and Assisted Suicide
 
http://www.internationaltaskforce.org/adneeds.htm and http://www.internationaltaskforce.org/order_info.htm
 [$8 for large packet if info, including 3 sets of the advanced directive per person — includes postage]
 [Ron Panzer for Hospice Patients Alliance, 
http://www.hospicepatients.org]