Making Decisions Today For Health Care Tomorow

Krista Hostetler 11-25-96






I. Introduction

A. Objective
B. Background information

II. Living Wills

A. Definition
B. History
C. Content
D. Difficulties With Living Wills

III. Durable Power of Attorney

A.Definition
B.Advantages

IV. Natural Death Acts

A.Purpose
B.Statutes
C.Complications as a result of them

V. Recent Developments

A.Uniform Rights of the Terminally Ill Act
B.Patient Self Determination Act



INTRODUCTION

Today, 80-85% of Americans die in medical institutions. Of those, 70% require decisions about whether to apply, withhold, or withdraw medical treatment (Makar 58). Due to this ever increasing number, the right to die is one of the most popular and controversial topics in medicine today. The issue comes down to personal beliefs and ethics and the fact that there is so little clear-cut legislation on this topic confuses it even more. Advance Directives provide, in theory, for self-determination and put the patients mind at ease with the knowledge that they have decided for themselves the extent of health care that they wish to receive. Also, for the family, the process of watching their loved one suffer through unwanted medical treatment is eliminated. In practice, however, there are a lot of inconsistencies and legal barriers that place limits on their usefulness.

Some would argue that there is a limit to the amount of self-determination a patient retains even with an advance directive. They would say that a part of self-determination is that the patient makes an active, mental decision about his/her health care, and that advance directives dont fulfill this requirement. Regardless, it is clear that it is better than having no voice whatsoever in the decision. Also, in regard to attitudes toward self-determination today, many people waive this right either because they dont know that they have a choice or because they feel that they dont have a right to question a doctor or make medical decisions themselves (report Abram et al. 49-50).

Alan Lieberson, author of the Living Will Handbook, describes a progression that our society has taken that has led to the necessity of advance directives. This is that since our society places a very high value on human life, it is becoming more and more important to preserve life, even when the quality of life is decreasing. Prolongation of a patients life started to reflect on the physicians ability. The relationship between this and huge advances in medical technology in the 1960s that introduced new machines that could be used to temporarily restore health led to several problems. One is that these machines began to be put to use even in cases where there was no hope of recovering with the previous quality of life. Second, even physicians who didnt want to use these machines sort of got trapped into using them in emergencies, when it was unclear what the outlook for the patient was. Once the machines are hooked up, it is difficult for legal reasons to get them turned off (Lieberson 27). In this way advance directives are economically wise because they eliminate a lot of unwanted, but previously unavoidable expensive health care (report, Abram et al. 56-57).

LIVING WILLS
In 1976, California passed the first living will act. The legislators felt that for terminally ill patients, the loss of dignity and the amount of pain and suffering that they endured in receiving life-sustaining treatment often outweighed the medical benefits that they received (Lieberson, 13). Another problem that the state hoped to correct for with the development of advance directives is that there wasnt any legal accountability on the medical profession to heed patients requests toward life-sustaining procedures.

A few clarifications in terminology should be made at this point. Advance directive is the general term used to refer to several types of documents that a person can draw up in order to have a voice in what can and cant be done to them medically in the event that they are incapable of making the decision. Advance directives can be split broadly into instruction directives that state specific procedures that may or may not be used and proxy directives which specify a third person to make decisions for the patient when they are incapable of doing so themselves. According to the Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, having the capacity to make decisions requires 1) possession of a set of values and goals, 2) the ability to communicate and understand information 3) the ability to deliberate and reason about ones choices (report 57).

Two of the most familiar advance directives are living wills and durable power of attorneys. Living wills are documents which govern the withholding or withdrawal of life-sustaining treatment from an individual in the event of an incurable or irreversible condition that will cause death within a relatively short time, and when such person is no longer able to make decisions regarding his/her treatment (Makar 58). These are generally instruction directives that sometimes outline specific treatments that can or cant be withheld but sometimes are much more vague and call for only the withdrawl of life-sustaining procedures that only serve to artificially prolong the dying process (Abran et al. 39). This ambiguity leads to a lot of problems that will be described in further detail.

The structure of a living will document is pretty standard and includes the following. First, a legislative declaration or intent. Second, a list of definitions. These definitions would include things like terminal condition, illness, disease, life-support systems, etc. Third, a standard living will form declaration is included that is written up by the state and filled out by the patient. Finally, directions for execution must be laid out, including things like who may sign as a witness, how many witnesses there must be, etc.

The extent to which a person can control the amount of treatment they will receive is limited to a certain extent by so called state interests, and here is where some of the roots of the problems with living wills lie. The first of these interests is the preservation of life. What this means in terms of self-determination is that the government wants to be able to decide to what extent life is worth preserving. In the case of a terminally ill patient, there comes a point where this interest is outweighed by the patients right to privacy. This of course raises the question of whether or not the government really has the right to make decisions about a patients quality of life. A second state interest is the protection of innocent third parties. For example, the government wants to be able to step in and force an expectant mother to receive a blood transfusion or a single parent to accept life-support. A third state interest is the prevention of suicide. This statement that lead to the decision of making euthanasia unlawful applies here in cases such as the one where a criminal who was committed to a life sentence was not allowed to starve himself rather than serve it. A fourth state interest is that of maintaining the integrity of the medical profession. A good example of this is where someone tried to refuse a blood transfusion for a bleeding ulcer. The court insisted that the transfusion be given because otherwise this would constitute inappropriate care on the part of the hospital. Problems arise due to misinterpretation of these state interests by people creating advance directives as well as by health care workers. Beyond that there are questions as to the business of the state in interfering with such personal aspects of patients lives.

Besides questions surrounding state issues, it was also very unclear whether health care workers were actually legally bound to carry out the terms of living wills. If they did carry them out, there was a chance that they could be prosecuted for it later. A lot of judgment calls had to be made and if the doctor did what he/she thought the patient would have wanted but the family didnt agree, there werent laws to protect the doctor(Abram et al. 139).

Perhaps one of the most frustrating problems with living wills is that there is a narrowness in definitions that leads to misunderstandings. For example, the term terminal condition is technically defined as an incurable and irreversible condition that, without the administration of life-supporting treatment, will result in death within a relatively short period of time according to the attending physician (Lieberson 15). Where most people might consider Alzheimers, end-state lung, kidney, or liver failure, or AIDS to be terminal illnesses, these are technically not included. One can list an endless number of cases where the patient just barely falls through the cracks due to the specificity of this definition. I will list two. First, there are approximately 10,000 patients in the US who are in a persistent vegetative state and wont regain consciousness, but who can live for many years with artificial nutrition and hydration. Therefore they dont meet the requirement of being expected to die within a short time period. Second, the definition for terminal illness also excludes those people who have unbearable pain but not a rapidly fatal condition. In some cases it may seem even more appropriate to let some of these people refuse treatment than some of the people who actually do qualify (Lieberson 15).

A second commonly misunderstood term is life-sustaining treatment. The definition for this is any medical procedure or intervention that, when administered to a qualified patient, will serve only to prolong the process of dying. Many times a procedure that is often used as life support does not qualify as such because it serves more than one purpose, i.e. it also gives nutrition, treats infection, supplies oxygen, etc. (Lieberson 15).

To conclude, it is generally fair to say that the usefulness of living wills is limited both by technicalities in wording and definitions as well as by legal barriers and lack of accountability(Lieberson 14).


DURABLE POWER OF ATTORNEY
The second most common form of advance directive is durable power of attorney. A power of attorney is a document by which one person (the principal) confers upon another person (the agent) the legally recognized authority to perform certain acts on the principals behalf. These apply to things such as decisions about selling property as well as to medical decisions and are very legally binding. They can be general (allowing the agent to act in all matters) or specific (for just one procedure). The problem with powers of attorney is that they go out of effect when the principal becomes incapacitated. For this reason, durable powers of attorney were created.

Today, durable powers of attorney are looked at as a good solution to some of the problems created by living wills. In Michigan, no living will acts have been passed because of the problems associated with them. In 1990, the durable power of attorney act was passed because it is looked at as a way for patients to have the solidity of having their words in writing with the knowledge that there is someone who will be there to make sure that their will is not compromised (Right to Life 1).
NATURAL DEATH ACTS
Another modification that was made on living wills was natural death acts. They were formed in order to give legal recognition to living wills, to add some standards to the existing system so that less would be left to judgment by health care workers. Once again, in the process of trying to correct the system, more limitations and confusion were to be created.

The basic idea of the natural death acts is that they allow each state to set forth statutes that make living wills binding. These often place requirements on a waiting period before the will goes into effect, require that the patients death be imminent, etc.(Lieberson 23). One of the best ways to really understand what these entail is to take a closer look at the problems associated with them.
First, there is no consistency from state to state. If a living will was created in Indiana, it may not be effective if you are in a California hospital. Second, there is often a waiting period between when the patient decides that they want no further treatment and when that decision can go into effect. In theory, this should allow the patient to have a chance to change their mind. If a patient is diagnosed as being terminally ill and they decide that they dont want to have any further life-sustaining treatment, they have to wait a certain length of time before any treatment can be discontinued. The major problem here is that often, the patient becomes unconscious before the waiting period is up, therefore nullifying the decision because the terms of the will were not closed (Abram et al. 142).

A third problem is that most of the time, death must be imminent even if doctors use the procedures the patient doesnt want. Therefore the living will serves no purpose. If the declarant is going to die anyway, there is no reason to avoid that procedure. Because of this statute, many people for whom the concern of a prolonged, undignified dying process is the greatest are exactly the people who aren't covered.

RECENT DEVELOPMENTS

So it seems that for all of the effort, we are still not being given a great choice when it comes to making medical decisions about our future. However, there is no question that more people are helped than hurt by choosing to create a living will or adopt a durable power of attorney. And progress is still being made.

In 1985, URTIA (Uniform Rights of the Terminally Ill Act) was formed to try to standardize living will statutes. Almost all advances that they have tried to make have been heavily criticized. However, they have been able to create a set of statutes that six states have adopted. More recently, in 1991 the Patient Self-Determination Act (PSDA), was passed to require all organizations that are providers of Medicare and Medicaid to make their patients aware of the options they have regarding advance directives. Specifically, this means that these institutions must 1) have documentation as to whether each patient has completed an advance directive, 2) provide education for their staff about advance directives, 3) see that there is no discrimination in treatment based on whether a patient has an advanced directive or not (Peer Review Systems 1).

Once again, new problems surfaced in spite of the attempt to make amends.
For one thing, even though the PSDA requires institutions to document whether or not their patients have advance directives, it does not require them to document what the specific wishes of the patients who do have them are. Recently, studies have been conducted that have shown that caregivers arent even aware of which patients have executed advance directives. In a recent study by the Journal of the American Medical Association, it was found that only 74% of the time were advance directives available for a total of 114 patients that were known to have living wills. Equally disturbing is that even when advance directives were available, they only influenced treatment 86% of the time. (Armitage 1).

Since problems with the Patient Self-Determination Act have come about, the agency that oversees Medicare and Medicaid, the Health Care Financing Administration has come up with additional regulations. These arent anything wildly different than those put forth by PSDA, but generally increase the accountability of health-care institutions in their duty to inform patients and staff (Armitage 3).

Even with all the opposing views and often negative attention surrounding this topic, it appears that overall there is growing support of advance directives today. Often, it is recommended that a combination of living will and durable power of attorney document is drawn up. There is now access to receive information, guidelines, etc. about advance directives through the internet. With the ever increasing cost of health care and the relative ease of creating an advance directive, it is safe to say that the benefits gained by them more than make up for the confusion and inconsistency surrounding them.



Works Cited



Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical Research, Abram, Morris B. Chairman. Deciding to Forego Life-Sustaining TreatmentWashington D.C.:U.S. Government Printing Office, 1982.

---. Making Health Care Decisions (Report) Washington D.C.: U.S. Government Printing
Office, 1983.

Alexander Law Firm. Medicare and Advance Directives. U.S.. Government Printing Office, 1993. Available: http:/www.seamless.com/alexanderlaw.

Arnitage, Matt. Opus Communications Health Wave. 1996. Available:http://www.opuscomm.com/nls/samples/balsample.html.

Lieberson, Alan D. The Living Will Handbook: The right to decide your own fate. Mamaroneck, New York: Hastings House, 1992.

Makar, Marjorie Conner, BSN. Consent and Right to Die. CME Resource Sacramento, CA: 1994.

Peer Review Systems. Health Care Quality Improvement Program Advance Directives Final Report. December 1995. Available http://cme-1.med.ohio-state.edu/prs/adv-fnl.htm.


Right to Life of Michigan. Living Wills and Durable Power of Attorney. Available:http://www.rtl.org/lwpda.htm.