Advance directives and family involvement in changing them

Ethics and Advance Directives

Ethics of Changing Advance Directives

Adults have the right and obligation to make decisions concerning their final days in advance. Whether or not to decline life support if death is imminent, or if a coma state becomes permanent is usually an ethical opinion which has already been formed and the adult who makes a directive concerning their own life under those conditions may make this action permanent by creating a living will or a previously prepared power of attorney, or directive which appoints a health care representative which the doctor may ask the patient to prepare in advance and keeps in the patient's file. It is the view of the writer of this paper that a person's advance directive should be followed, no matter how difficult it may be for the family or medical personnel.

As many health facilities would put it, the following are the questions that one must ask oneself as one is deciding on what decisions must be made during end-of-life circumstances:

Who would you like to make treatment decisions for you, if you become unable to so?

How do you feel about ventilators, surgery, resuscitation (CPR), drugs or tube feeding if you were to become terminally ill? If you were unconscious and not likely to wake up? If you were senile?

What kind of medical treatment would you want if you had a severe stroke or other medical condition that made you dependant on others for all your care?

What sort of mental, physical, or social abilities are important for you to enjoy living?

Do you want to receive every treatment your care-givers recommend? (University of Michigan Health Systems, p. 1)

If a patient is put into a circumstance where they cannot and are not able to make the decisions above, that is the time that an advanced directive is utilized, if it is available. The appointment of a person who holds durable power of attorney or health care representative includes the patient's choice of a person they trust who may feel the same as they about end-of-life decisions to be their health care representative, to stand in their stead, as it were, when they are no longer able to direct their own care. It also includes the directive to consult with the doctor, or several doctors, on the best path to choose if there are complex circumstances. In this case, many doctors feel that if a patient stands a chance of recovering and retaining quality of life, then they would direct the health care representative to sustain life support. However, if quality of life would be significantly impaired, doctors who have experience may counsel the health care representative to withdraw life support and allow the patient to die from natural causes. Since relatives often do not share one's same views on end-of-life scenarios, the appointment of a health care representative may extend to close friends or even the minister of one's church.

Living Will also is a legal document which directs whether or not one wishes to be sustained on artificial life support. It may also include appointment of someone one trusts to make wise health care decisions on one's behalf in case one is unable to do so. A Do-Not-Resuscitate (DNR) order may be part of the Living Will as directed in certain circumstances.

In 1991 the U.S. government passed the Patient Self-Determination Act (PSDA) requiring all health-care institutions that receive Medicare of Medicaid to provide patients with information about their state's laws and their rights to execute advanced directives, but it did not require the states to adopt or change existing laws. The information given must state the health institution's policy on withdrawing or withholding life-sustaining treatment. Violation of this law can lead to loss of federal funding for the institution.

It is a legal and binding agreement and contract which the patient has signed and should not be thrown aside for emotion's sake. The reason these documents are necessary is that, should one be sustained in a coma, or even if one is conscious, but at a point where there is a choice of dying or living with terminal illness and pain so much so that quality of life may be compromised. Living with serious handicaps that are so extensive as to make life unbearable impacts every aspect of life for the patient and those around him or her. Emotions may be part of the scenario, as are spiritual questions. Living with excruciating pain, or living on drugs to alleviate pain are both untenable in many people's minds.

To put one's wishes in writing in an advance directive of some sort normally allows the person who made it to decide in advance how health care will be administered. It can spare an anguished family from making decisions which are heart-wrenching and may lead to guilt and recriminations later. However, in cases where families disagree with these directives and wish to change them, ethical questions arise.

When advance directives are legal, that is, they are signed when the person is of sound mind and body, before a notary public and witnesses, then there is little anyone can do to change the directive. However, if the advance directives are made at the point when the patient enters the hospital and are not legal in all aspects, family members may claim that the decisions were made when the person was not of sound mind and body and are therefore not legally binding. In this case, family members may, and sometimes do, change the directives to the medical personnel to keep the patient on life support.

There is merit in the decision to keep a patient on life support when decisions are made while the patient is under the stress of severe illness, perhaps in fever and pain, in that these elements often create a desire to die, whereas when one recovers from an illness, one can make better judgments not based on the present illness. In the throes of a delirium or when experiencing high fever and agonizing pain, all one wishes is to be released from the suffering by any means, even death. However, if one recovers from the illness one may go on to live a full and pain-free life and wonder why one wished to die at that point. In such circumstances where decisions are made that are influenced by emotional and physical states of mind and body from which one may recover, but does not wish to at that particular moment, the decisions of relatives or friends and doctors who can see the circumstances more clearly may be more valid and reasonable than the patient's

However, if the decisions are made on the basis that that one does not know whether the person will live or die and in order to alleviate any guilt they may feel in the future for condemning their relative to death, relatives opt for extreme life sustaining measures, then the reasonableness and validity of this decision may be compromised.

This paper will not address psychiatric advanced directives, since the question of who may decide for a person experiencing mental incompetence or capacity involves many more issues and usually do not involve life-sustaining measures.

When a person is suffering from a disease or condition, such as dementia, and it was clear from their directive that they did not want to live with this condition, and then they develop pneumonia or have an accident that puts them in the hospital, does one treat them, or honor the person's original wishes and allow them to die from the secondary illness or condition? They expressly stated that they do not wish to continue in the state in which they now live and one should allow them to die from the accident or deadly illness. However, this is the very problem which relatives face when they admit an elderly patient with dementia or Alzheimer's disease. They have to decide whether to treat the second condition, as the following study debates:

Dementing illness poses a special problem for the implementation of advance directives. Suppose a now-incompetent person potentially changes her preferences regarding treatment. Suppose further that she is not competent to create a new advance directive, nor can she clearly articulate new preferences or revoke the existing directive. Should her existing directive have authority? Two different accounts offer different responses to this problem. On the first account, existing advance directives do have authority because only competent persons have a right to autonomy and thus a right to plan for their future. Following existing advance directives is a legitimate exercise of precedent autonomy. This first view is predicated on certain assumptions regarding personal identity. Proponents of precedent autonomy, most notably Ronald Dworkin, presume personal identity survives dementing illness. According to the second view, precedent autonomy does not have authority over conscious, incompetent persons because as a result of dementing illness, the now-incompetent self and the prior, competent self are different persons. This second view is also predicated on a fact about personal identity -- that personal identity does not survive dementing illness. According to this second view, contemporaneous autonomy trumps precedent autonomy because honoring precedent autonomy imposes preferences and values of a different person, the formerly competent self (Buccafumi, p. 14).

The role that patient's families, doctors, health aides, pastors, chaplains and administrators, health educators and others play is crucial. Few people have executed an advanced directive, much less appointed a healthcare power of attorney by the time they enter a hospital with a debilitating condition. An informed consent form only marks the fact that a conversation has taken place in a health facility. The process that needs to or ought to take place concerning a patient's wishes and ensure one's wishes are empowered are part of the process involved as one fills out the advanced directive for themselves. In California the state has consolidated statutes for advanced directives and added some rights and included the best features of past laws. A patient may appoint a power of attorney for health care, or use a form to state what one's wishes are, which includes the ability to use extreme life-sustaining measures in having one's life prolonged, and/or have pain relief. An agent may be appointed to make sure these directives are carried out. Advanced directives may also expressly allow the hospital and relatives to use extreme life-sustaining procedures.

To love a person is to learn the song in his heart and to sing it when he has forgotten it," is what Sue Rubin believes the ethics of advanced directives is all about (Rubin, 2001). In other words, when a patient may no longer be able to communicate their wishes, the advanced directive and the agent named in an advanced directive does it for them.

Value assessment in ethics is the first point of departure in the differences of opinion concerning end-of-life decisions. Intervention-based approaches are the most common way that end-of-life scenarios are viewed. When a person sees all the types of medical interventions that may be used during illness and chooses what one would do in certain situations, then records these in detail for their doctors and relatives to use in medical emergencies, it is hard to decide when the actual event occurs what the person may have meant. An procedure-based approach does not ask if there is a point at which the person does not wish to go below. The bottom line is not really visible in an intervention-based approach. The false illusion that one may control every medical procedure one is going to be subjected to before one draws their last dying breath is sadly evident in the intervention-based approach.

Value-based approaches are now becoming more acceptable. It is dynamic and changing, as one experiences life. To allow a patient to change one's directives from time to time is important, as people may make broad, sweeping statements in their directives, yet when one gets down to details, one might make exceptions for certain circumstances. Choking, for example, may not require DNR orders, yet some people have a standing order for DNR in every situation, while others say that they certainly would want to be resuscitated if they choked on a peanut. An incurable, progressive, degenerative disease where treatment only prolongs dying, on the other hand, may present a different scenario where a patient may wish a DNR order to be carried out (Rubin Video).

When one allows relatives to decide and interpret a patient's wishes and make decisions which go against what the surrogate decision-maker or the patient would have wished, it is wrong. For instance, according to Donald "Dax" Cowart, who suffered burns over most of his body as a young man, in 1970, and begged the doctors to stop treatment and allow him to die, he should have had his wishes honored. As an attorney, later, he fought for the right for a patient to determine his or her own treatment or to be allowed to die if they felt this was best. He saw the doctors who treated him against his wishes as being paternalistic and was an early spokesman for the concept of patient individualism and determinism (McGee, p. 1).

When a patient receives CPR or a life-sustaining procedure against the patient's wishes as expressed in an advanced medical directive, a hospital may be liable. Interns, aides and other personnel who meet an incoming patient with a life-threatening condition need to check to see if that patient has an advance medical directive that may preclude use of some procedures. In a study of the care received by 47 critically ill elderly patients who were received in a hospital, 19 of them had advanced directives. Two of these (11%) received CPR, in spite of the directions in their advanced directives. All other things being equal, the standard of care was not influenced by whether the patient had an advanced directive or not. The conclusion of the study was that an advanced directive does not alter the quality of care given to a patient, but that hospital personnel need to find out if a patient has a legal advanced directive upon admission and abide by it (Goodman, p. 704).

Many hospitals are now putting an ethics committee in place which is available to help patients and families discuss ethical issues regarding the care of a dying patient. If there is disagreement concerning the interpretation of authority in a patient's living the ethical or medical team should meet with the family to clarify what is at stake. Exploration of the family's rationale for disagreeing with the living will is done, examining whether any new concepts have interfered since the living will was put into place and whether or not the family members have different ideas of what should be done. Sometimes the impression of what is occurring is mistaken and a revised look at the patient's best interest is reviewed, given the patient's commitments and values, compared with those of the family. Perhaps the family disagrees with the physician in interpreting the advanced directive. In this case the family, ethical committee and medical team may meet to discuss the exact terminology used in the living will.