2
RIGHTS OF THE DYING PATIENT

In order to plan for the best care at the end of life, it is vital to understand your rights as a patient. These are numerous, which most people do not realize. The majority of these rights, which ensure comfort and dignity and allow patients to remain in control at life’s turning points, are protected by court decisions that have become established case law, based on constitutional rights and common law. As a result, the rights enumerated in this chapter are legally and ethically not controversial. Every patient and family member should be aware of them.

WHAT ARE YOUR RIGHTS?

Absolute or near-absolute rights, protected by our courts:

• If you are no longer able to participate in medical decision making, you have the right to have your medical proxy (agent) speak for you with the same authority that you yourself would have if you were still able to make decisions. This presumes that you have made in writing such a delegation of authority, a subject covered in the chapter on legal matters and medical planning. The appointment of an agent ahead of time is essential if your wishes about end-of-life care are to be carried out.
• You have the right to have pain and suffering relieved with sufficient medication and vigorous pain management. This is not codified in law in many states, but it is almost universally agreed upon by organizations that promulgate national medical standards of practice (e.g., Joint Commission on Accreditation of Healthcare Organizations). At life’s first turning point, comfort care becomes the focus of treatment rather than restoring health. Even though relieving pain and suffering with large doses of medication can run the risk of an earlier death, pain relief is a priority at this stage in life, and adequate pain relief is essential to ensuring your comfort and dignity. This right is placed under the “absolute or near-absolute” category, although I recognize that it is sometimes not respected. Some doctors are still excessively wary about using enough medication to relieve symptoms, and patients or their agents may occasionally need to insist that this is standard medical practice and must be observed. You should ask your doctor, nursing home, hospital, or hospice what their policies are regarding pain management, since such policies may have a huge effect on your future comfort.
• You have the right to refuse all unwanted treatment. This is true even if refusal might bring about death more quickly. The refusal by you or your legally appointed agent of any undesired treatment or procedure is an absolute right. No one can carry out any medical action that affects you without your consent, no matter what it is. The only exception to this might be in the instance of someone administering emergency care to you if you are suddenly not able to speak in your behalf and the attending person does not know your circumstances, or a very special and infrequent circumstance of some sort that has required the intervention of a probate court.
• You have the right to refuse any unwanted treatment that has already begun. This can be more difficult psychologically than refusing a treatment before it has been started, but ethically and legally there is no difference between discontinuing an already established treatment and not having begun it in the first place.
• You have the right to refuse all nutrition and hydration. This is also an almost absolute right, and it can be of great importance if a dying person wishes to shorten the period of terminal suffering. Refusing all liquids leads to dehydration and an earlier death. This is discussed at length in the chapter on hastened death.
• You have the right to refuse cardiopulmonary resuscitation (CPR). CPR is known as a “heroic measure” in medicine. Most people want heroic measures only when restoring health is the goal of treatment. Insuring this requires special do-not-resuscitate orders in accordance with state public health department regulations regarding emergency care, discussed later in the book.
• You have the right to change doctors. Doctors vary in their willingness to discuss end-of-life options, and they vary in their comfort level with patients who want to maintain control. Change doctors if you are not entirely satisfied with this critical member of your health care team. You are a customer who is purchasing a product (health care), and you have every right to choose who provides that care. Sometimes, due to local circumstances, HMO restrictions, or geography, this freedom of choice may not be easy to bring about, but if there is a choice available, you can make it. I have found that patients are often embarrassed to bring up the subject of changing doctors, but they should not be. This involves emotions and personal considerations, but the patient as a consumer has the right to make the decision.

Agreed-upon rights, but not necessarily backed by specific law in every state:

• You have the right to have valid advance directives considered. Advance directives are formal, written decisions made prospectively about your end-of-life care, directions that indicate your wishes in advance. Living wills, medical proxy designations, and do-not-resuscitate (DNR) orders are examples that are all discussed in the chapter on legal matters and medical planning. The degree to which they are binding is discussed in that chapter. Living wills, simple statements of your wishes, may or may not be binding. Other forms of advance directives have more legal force. The situation can vary from state to state and situation to situation, although the basic principles are generally recognized.
• You have the right to be fully informed of all treatment options available to you for end-of-life care. Ask your doctor about all the options, especially palliative treatment. He or she should inform you of the risks and benefits of each option (whether palliative or curative in aim) as well as the probabilities of treatment success. This is part of “informed consent,” which is now the subject of many regulations by governmental agencies and standard-setting groups (e.g., Joint Commission on Accreditation of Healthcare Organizations), plus case law. The doctor has an obligation to inform the patient fully about his or her illness and treatment options and procedures. Not informing the patient fully is substandard medicine.
• You have the right to know the ways in which undesired lengthening of life can be avoided in situations of suffering at the end of life. This is discussed in detail in the chapter on hastening death. In a way, it falls under the right to informed consent, noted previously, but you will find few laws or regulations that specifically address undesired prolongation of life. Rather, it is what a conscientious doctor would discuss with the patient. Your doctor should raise this issue, and, if he or she does not, ask about it yourself. If suffering is intolerable despite all efforts directed at relief, you can inquire about legal options for hastening death and not prolonging the dying process. Your doctor—due to personally held beliefs—may not agree to assist in legal ways of hastening death, but you certainly have the right to ask. Organizations, such as Compassion and Choices and Final Exit Network (both discussed later in the book), can discuss legal options on this subject if your doctor will not. Very few patients actually ever need aid-in-dying, but every patient should think through this critical question in advance.

HOW CAN YOU ENSURE YOUR RIGHTS ARE HONORED?

Although the previously mentioned rights are well established and generally not controversial, they are often disregarded, most often because patients and families do not realize what their rights are. Even doctors sometimes need to be reminded and educated about these rights of the dying patient.

There are ways in which people can ensure their rights are respected and their wishes for end-of-life care are met.

• Knowing your rights is basic and most important. You need to be prepared to stand up for them—insist on them.
• Discuss your rights with family and caregivers. Talk about potential problems.
• Always remember that you alone are ultimately in charge of what is done and not done as long as you are competent. This is a very basic concept that confuses many people.
• Make your wishes clear so that you do not leave decisions to others who may make choices for you that you would not want. Indicate your wishes ahead of time with advance directives. This helps you stay in charge when you are no longer competent. If you become unable to make medical decisions, your appointed agent (proxy), speaking on your behalf, can protect your interests. This person needs clear prior instruction by you and needs to act vigorously in your behalf. (Living wills, medical proxy designations, and DNR orders are discussed in Chapter 12 on planning ahead with advance directives.)
• Define goals and stay focused on the goal of treatment—one of the most important ways of ensuring rights are met. Is restoring health the goal? Or, have you reached the turning point where comfort care becomes the goal? If definition of goals is done as a formal exercise, the protection of rights and care of the patient are made much easier.
• Keep treatment in the simplest setting possible (i.e., home, hospice facility, nursing home, and hospital, in order of increasing complexity). The simpler the setting, the more easily rights can be ensured. This dictum tends to be true as long as proper and sufficient palliative care can be rendered in the simpler setting. Sometimes, it might not be possible to get the needed degree of palliative expertise in the simpler setting, and, in this case, one might give up some degree of control in the more complicated setting as the price to be paid for the expertise. In the next chapter on comfort care, we shall see how increasing complexity of treatment increases the difficulty of protecting rights. Most of the time, rights are most easily protected at home when home care is workable and feasible. Avoid transfer to the hospital unless it is clearly necessary for the control of symptoms.
• Ask for a referral for hospice care. The hospice movement has matured greatly in the last twenty years, and expert advice on and assistance with end-of-life problems is now available from hospice units in almost all communities. This does not replace one’s usual health care team, but supplements it. Hospice is used to working closely with other health-care providers, and they can provide invaluable help.

THE OFFICE VISIT: AN OLDER PERSON CONFUSED ABOUT RIGHTS

Alice was a charming woman in her mid-seventies, extremely devoted to her husband George, who had suffered a very bad stroke the previous year. This was evident from the way she spoke of him—lovingly and gently. Her son Wilbur accompanied her to my office, and I was instantly won over by them. The patient himself, too disabled to come with his family, must have been a wonderful man. He had to have been, to have such a wife and son.

Alice had been referred by a psychiatrist colleague of mine who had called to ask if I would speak with them about their options for George at the end of his life. Following the stroke, George had been unable to speak. Communication was reduced to questionably meaningful nods of the head. He choked on food and water and was fed via a gastrostomy tube into his stomach. He had had repeated aspiration pneumonia, which precipitated hospital admissions and antibiotics. He had been in several fine institutions, starting with a famous tertiary center where he was on a respirator, ending with his present nursing home. Whenever George had a threatening fever or respiratory difficulty, he would be rushed back to either an emergency room or a hospital ward for aggressive treatment. He remained totally, completely, and hopelessly disabled.

Alice was confused as to what she should do. She had a properly executed medical proxy that gave her complete authority to speak on her husband’s behalf, but she did not really understand that she had that power, and, if she had known, she did not know what to do with it. She was distressed at George’s predicament and felt desperately that something needed to be done—but was not sure what that could be.

We talked for an hour, and I gave her my thoughts. At the end, as Alice and her son left, both expressed profound appreciation for what I had told them and said that no one in all their multitude of medical contacts had ever spoken to them about my suggestions. They left with new resolve to address George’s predicament in a different way—and they seemed relieved and somewhat encouraged.

What had I told them? I discussed what to me were simple concepts and plans of action, none profound or controversial. They were the rights listed previously, all commonsense statements that simply needed to be clarified and understood by the wife and son. I told them not to feel guilt for a firm decision to render comfort care only. George was slowly dying from his stroke, and they were not killing him by saying no to further aggressive intervention. I emphasized that there was no difference, ethically or legally, between a treatment discontinued and a treatment never started in the first place. I urged them to identify the medical person in charge (it needed to be one doctor). Above all else, I pointed out how important it was to work with that person to define the goals of treatment, which were no longer to restore health but rather to provide comfort measures only to ease the dying process.

The rights that exist for patients at the end of life are powerful rights, but they are of no avail if not understood and championed.