Ethical Issues in Terminal Health Care

Part Four: Patients Have Rights, But Doctors Have Rights, Too

by Ed Newman

Anyone who watches any amount of television on a regular basis has noticed that T.V. commercials repeat themselves. Sometimes tiresomely. Whether it's cars or burgers, soft drinks or detergents, marketing gurus across America believe that without repetition, their messages will quickly be lost amidst the forty-two zillion other messages competing for our half-attentive minds. And to a large extent they are right. We often need to hear a message repeated, because we often don't "get it" the first time. Either we failed to notice it, or we failed to realize it's significance.

For this reason, we are returning to the subject of living wills, patient rights and self-determination in terminal health care.

In December 1991 the Federal Patients Self Determination Act went into effect. In essence, this piece of legislation mandates that all hospitals, nursing homes and home health care providers are required to inform patients of their rights as patients and their ability to make an advance directive (living will) regarding their health care prior to treatment.

A living will is a document which tells your physician or health care provider what types of treatment you want if you become terminally ill. It can outline the types of treatment you want and what you don't want. In addition, it can also name a person as a proxy to make these health care decisions for you.

It is noteworthy, however that while living wills have been widely discussed for years, and that Minnesota has had an Adult Health Care Decisions Act in force since 1989, there are still many questions and concerns about what living wills mean. And many people still have fears about the implications of putting their wishes in writing. Perhaps some clarity can be brought to the situation by understanding when and how these advance directives are used.

Doug Lemons, Director of Social Services at St. Luke's Hospital, explained. "Keep in mind the context for which the Living Will was developed. It is not in the emergency room, it is not in the operating room, but it is after the fact, when the patient is perhaps out of intensive care and being kept alive with machinery. It is that situation for which living wills were created."

According to the law, a living will becomes legally enforceable when the patient can no longer decide treatment decisions for him or herself and is terminally ill. This means that the patient is in an incurable or irreversible condition for which treatment would only prolong dying.

"Some people," said Mr. Lemons, "fear that if they should have a car accident and they are in the emergency room, that the doctor would say, 'Oh, he's got a living will. Just let him die.'
"That can't happen and it won't happen, because as people move into the emergency room, they are there for emergency care. The living will doesn't apply at that point. The living will applies once the patient gets to his room on a respirator."

Another situation where living wills are not enforced is in the realm of surgery. To illustrate, Mr. Lemons shared this example. "Recently someone came into the hospital for surgery who has a terminal condition, and they came in for an operation to relieve some of their pain. In order to get through the operation they were put on a respirator -- and their living will says they do not want to be kept alive on a respirator. Their proxy came up into the ICU and here is this person being kept alive on a respirator. Is that a violation of the living will? No. It is a continuation of the surgery. In order to get through the surgery, because the heart had stopped -- and this is typical sometimes in this situation -- she had to have help in breathing. 24 hours later she was awake, and 72 hours later she was returning to her pre-operative state.

"Was the respirator a violation of her living will? No. She came into the hospital to relieve some of her pain. This procedure was necessary to achieve this goal.

"If, however, we later could not wean her from the respirator, then the decision would have to be made by her proxy, because she did not want to be kept alive on and on and on and on. So here, at this point, we follow her dictates [as specified in her living will.]"

While the trend in health care over the past twenty years has been toward patient empowerment, physicians are still ultimately responsible for the health care decisions made in a patient's treatment. Some people are surprised to learn that a physician is not required to follow the dictates specified in an advance directive. "Under our living will statute your health care provider can choose not to follow all or part of your living will," said Legal Aid Officer Dale Lucas, senior attorney for the Senior Law Office. "You have two choices then. You can choose to stay with that medical provider or you can choose to find a different one. But that medical provider has to tell ou about this right away when you provide a copy of your living will to the medical provider."

The reason for this becomes more clear when one recalls the history of physician/patient relationships.

At one time, the typical model for medical care was the Theocractic Model. "It was as if the physician was God," says Carolyn Schmidt, "and had all the answers. That became somewhat more gentle as care became more sophisticated. We entered what might be called the Paternal Period, where the physician was like a father who knew what was best for his patient."

As medical care became still more technical the model changed to what we might call an Engineering Model. In this scenario, the physisican was approached in much the same way as one would contract an engineer. Because the engineer has more knowledge than you, you trust him to take over and do what is correct.

More recently, said Ms. Schmidt, "a realization has been made -- especially among the younger doctors who are graduating from medical schools now -- that health care consumers are much more sophisticated and aware due to the spread of knowledge through the media. The ideal model has now become a Cooperative Model where the physician and the patient both have input about the nature of that care."

In this new approach to health care, patient and physician work as a team. The benefit to health care consumers is an empowerment to a degree that has never been experienced before. However, just as there are limits to free speech -- we are not permitted to shout 'Fire!' in a crowded theater -- so there are limits to patient rights.

In the Cooperative Model, Ms. Schmidt said, "you are working in a team. And whenever you work in a team, you are two persons, and both of those persons have rights. Patients know what they want done to their own bodies, and those are very real rights. But the physician knows what he is able or willing to do, both in accordance with his own personal morality and with his knowledge of the practice of sound medicine. It would do real violence to him to have to go against either of those."

The bottom line is that there are times when the expressed directives in a living will cannot be carried out in good conscience by one's physician, and the physician is not obligated to do so. It is the doctor's right to refuse a particular service.

Nevertheless, if this were to happen, the law states that your doctor is required to indicate this. Said Mr. Lucas, "The medical provider has to tell you and document this in his file that he can't follow all or part of the living will."

Some people have wondered if a living will is necessary at all, since Durable Powers of Attorney are a legitimate option for health care decisions. (A durable power of attorney is a signed, dated and witnessed paper naming another person to make decisions for you. Any competent person over 18 can be chosen. The person does not have to be attorney.)

According to Dale Lucas, one advantage of the durable power of attorney is that you don't have to be terminal for it to go into effect. However, since the durable power of attorney was created chiefly for financial matters, Mr. Lucas adds, "I wouldn't feel totally secure that the durable power of attorney for medical care would be followed." The purpose of this document is specifically for appointing someone to be an agent on your behalf.

Why, then, have a living will? "The reason people have a living will," said Mr. Lucas, "is because they don't want to place that tremendous burden of repsonsibility on a loved one to make that decision. Other people think they do want a proxy decision maker. So there are two schools of thought on that. It's an individual decision that has to be made. I, for instance, have a living will and did not name a proxy decision maker."

In Minnesota, there is a Living Will Form which has been approved by law and should be available from your doctor, health care provider or attorney. This form asks questions to help you clarify what you want and do not want in the realm of terminal health care.

You are not required to have all the statements filled out. For example, if desired you may skip everything and simply indicate the name of your proxy, the person who will speak on your behalf should you become incapable of making your treatment decisions known.

After the living will is completed, it must be signed by you and two witnesses or a notary public to become legal. Witnesses who will benefit from your estate are not valid. Finally, you must give your living will to your doctor or health care provider and you should ask your doctor to write out an order to carry out the terms of your living will.

A lot of people equate a living will with "pulling the plug." But according to Mr. Lemons, "A living will does not mean 'Pull the Plug.' It can also mean Tape the Plug to the Wall, put the tubes in, do everything possible, because it's your will."

Another concern being raised has to do with the effect one's living will might have on insurance premiums. Can one's insurance rates go up if they request total care instead of minimal care during their final days? Will insurance companies have a low option plan that encourages people to request No Code Blue or DNR on their charts? "In the state of MN the law says no insurance company can adjust their rates based upon a living will," said Mr. Lemons. "That's good news."

A living will does not have to be complicated. It may, in fact, be a simple statement such as this: "If in the opinion of two doctors I am brain dead I do not want to be kept alive." Having one's intentions spelled out in black and white helps clarify what one truly believes.

You may feel that a living will is not for you at all. It's not, in fact, required by law. It is simply a tool to help ensure that you get the kind of health care you want. If you do not have a living will, your nearest of kin will be consulted. In any case doctors are still committed to utilizing their training and experience toward making the best decisions possible in every aspect of your care. Whether you wish to use this tool is an option only you can decide.

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Any information in this article pertaining to legal or medical matters is not to be construed as professional advice. Copyrights remain the property of the authors.

Original versions of these articles originally appeared in The Senior Reporter in the spring of 1992.


Part One: Issues and Their Implications
Part Two: Ethics Committees
Part Three: Local Perpsectives on the Right-to-Die Debate
Part Four: Patients Have Rights, But Doctors Have Rights, Too
Part Five: The Pros and Cons of Physician Assisted Suicide

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