Guide

Americans are independent; they like to control their own lives. However, they rarely think about the final phase of life and, as a result, often are unprepared to face heart-wrenching decisions. Marilyn Webb suggests in her book The Good Death: The New American Search to Reshape the End of Life that while a good death was once a matter of sheer luck, now it "has more to do with the decisions we—and our healthcare providers—make about our medical treatment and terminal care . . ."

Research shows that people have strong feelings about how end-of-life decisions are made. They worry about how their decisions will affect their families both emotionally and financially. They want to work with their doctors to decide the right treatment. They fear their doctors will stop caring for them when the end is near. They want emotional and spiritual support, as well as good medical care. Most of all, they want to die as peacefully as possible, free from extreme pain, suffering and prolonged dependence.

Most people first deal with end-of-life issues not with their own medical crisis but with the death of a relative or close friend.

The Morrison Family

Tim and Nancy Morrison are in their 30s with two young children. Work and their children's activities fill their days. But a phone call from Tim's mother gives them pause. She tells them that after a two-year bout with cancer, Tim's boyhood friend Dave just died. Tim is shaken to learn that Dave stopped his cancer treatment several weeks ago.

Tim couldn't understand why Dave gave up the fight. He had never been a quitter before, and it was hard for Tim to accept that his friend had stopped the treatment.

Nancy, on the other hand, reflected on how sick Dave had been with the cancer treatment. She could imagine that some people, like Dave, would finally decide that it was no longer worth it.

They talked about what each of them might have done in Dave's position. To their surprise, they discovered they actually had very different views about how they would make this kind of decision.

Nancy and Tim went to bed that night thinking of Dave and his family and wondering, "What if . . . "

Both Tim and Nancy had lost grandparents, but they had never thought about their own deaths until Dave died. His death prompted them to think about and discuss their views about dying. Realizing that one of them might have to be the decision-maker for the other, they talked over their own beliefs about what is important at the end of life.

Why, you might ask, should young, healthy people like Tim and Nancy bother with end-of-life planning when they have no need now?

There are several reasons. First, "advance care planning" allows you to think about important issues when you don't need to make immediate decisions and aren't under great emotional stress. It's also good to know that your loved one understands your wishes should you unexpectedly become unable to speak for yourself. And if you become the decision-maker, you don't have to guess what your loved one wants; you're prepared to act based on what you know. Finally, if you and your family have different views, advance care planning can help avoid serious family conflict.

As it did for the Morrisons, the subject often arises when a close friend or relative dies. News coverage of the death of a celebrity, magazine articles or community meetings on the subject may also bring it to your attention. As you begin advance care planning, consider these questions:

Sharing your views with those important to you is a good way to explore this topic. This also can help you identify the person best able to speak for you if it becomes necessary.

If you have a doctor, it is helpful to make sure he or she knows your specific views about end-of-life care. You may want to schedule an appointment to talk to your medical caregiver – such as your primary care doctor, nurse practitioner or specialist.

Also, you may want to complete a document called an advance directive , such as a Durable Power of Attorney for Health Care. This allows you to state in writing who will speak for you if you can't speak for yourself and to indicate your preferences about end-of-life care. Or you can complete a Living Will, which states your wishes about life-sustaining measures if you are terminally ill or permanently unconscious. All states have at least one type of advance directive as a legal document.

Completing an advance directive is particularly useful if there is any chance that family members may not know what you want or may not agree on the type of care you should receive. An advance directive can affirm what you've thought about and talked about with people close to you.

Advance care planning is a process rather than a single decision. Most likely you will face a series of choices as your health and personal goals gradually change over time. However, if faced with having to make decisions now—for yourself or for a loved one—there are things you can do to make sure the last months, weeks or days of life fit with your or your loved one's values about living and dying.

The Thompkins Family

Ada Thompkins is an 82-year-old retired teacher with three grown children and seven grandchildren. After losing her husband several years ago, Mrs. Thompkins' physical and mental abilities gradually declined, leaving her in need of increasing help from her children. The Thompkins are a close-knit family with a long tradition of shared activities.

Three years ago, when Mrs. Thompkins suffered a severe stroke that left her unable to move her body or talk, she was placed in a nursing home, where her family visited every day. Hospitalized several times for pneumonia, she now has a permanent feeding tube, is very weak, and no longer recognizes her family.

Mrs. Thompkins has returned to the hospital, where she is receiving intensive treatment for her heart condition. When her oldest son Fred arrives, he worries, "I just don't know if this is what Mom would have wanted." For all their closeness, the family has never discussed their personal values about the last months of life. They have never talked about dying.

Situations like this are common. So are the questions they raise: If this were your mother, would you know how she wants to live her last phase of life? If you were Mrs. Thompkins, what would you hope your children would do? Unlike the Morrisons, who started talking about their views on dying as young adults, the Thompkins don't know their mother's wishes. Since she can no longer communicate, her family has to imagine what she might want.

When a family makes these kinds of decisions for a loved one, they need to consider several things:

It is sometimes difficult for people to accept that a loved one is dying, especially since doctors usually can't predict how much time a person has to live. The subject of dying is often avoided for fear that it means "giving up." Yet, when family members are helped to face what lies ahead, they are better able to seek the care best suited for their loved one. The first step is understanding the person's medical condition now and what may come later.

If you are the decision-maker for a loved one like Mrs. Thompkins, you will want to ask the doctor:

In general, there are three goals of treatment for someone in the last phase of life:

All of us hope that medical science can provide cures. And if it cannot cure, we hope at least it can help improve health. Yet when a severe illness, terrible accident, or advanced old age occurs, it may no longer be possible to make a person well. At that point, continued treatment may be able to support life and keep the person comfortable.

But for some people, the treatments or machines that support life also may cause or prolong suffering. When that happens, life-sustaining measures—such as breathing machines, CPR, feeding tubes, IV fluids and antibiotics—can be stopped or not started. What doctors call comfort care becomes the focus. Comfort care aims at controlling pain and other symptoms while preserving dignity and addressing the emotional and spiritual needs of the patient and family.

Although this comfort care approach should always be offered to those near the end of life, patients and families often don't know about it. Hospice programs specialize in comfort care, but it can also be provided by other healthcare teams. If your doctor doesn't discuss comfort care with you, be sure to ask.

When the time comes, judging a loved one's quality of life can be difficult. Even if you believe your loved one would not want to continue having life-sustaining measures, it can be hard to let go. You may feel guilty that you have not done everything you could or you may worry about money problems. There may be unsettled family issues that affect your feelings. Talking with a spiritual leader or a counselor can help you with these concerns.

You and your family do not have to face these choices alone. Your doctor can give you medical information and advice. Nurses, social workers, chaplains, support groups and your faith community can also help with emotional support or the day-to-day problems of caring for someone who is dying—whether in a hospital, nursing facility, or at home. Talking to these caregivers as early as possible will help you or your loved one receive the end-of-life care you want.

Sometimes, you may not agree with the doctor about the best course of action. If this occurs, speak openly about your concerns. If you are still unsure, you may want another doctor's opinion or to speak with a patient assistance employee from your hospital or health plan.

In some cases, hospital ethics committees—doctors, nurses, chaplains, community members and others—can help you and your family with these concerns and help solve conflicts.

If you or your loved one is very ill, many doctors may be involved. This can make it hard to stay well informed and talk clearly with all of them. If this happens, you need to be forthright—setting up meetings with the doctors, writing down your questions in advance, keeping notes, and being available when changes occur. Nurses can play an important role in helping you with this process. If there are many family members, you might also consider naming one as the main contact person to talk with doctors.

All those involved in caring for a person who is dying—family members, doctors, nurses, social workers, clergy and other support staff—have a role in making sure that end-of-life care is humane.

The checklists on the following pages
tell you what you should expect from
your doctor, as well as those actions
you should take yourself.

Whether you are in the early stages of planning like the Morrisons, faced with decisions for a dying family member like the Thompkins, or somewhere in between, you can help to shape the dying process. Advance care planning, good communication, and shared decision-making are important ways to obtain end-of-life care that will bring peace of mind to you and your family.

All states recognize at least one type of advance directive. There are two main types, and you can change or cancel them at any time.

Most communities have hospice programs that provide medical, psychosocial, emotional and spiritual support for dying persons and their families, and support for grieving family members. If you qualify, Medicare and many health plans pay for hospice services. To learn more, ask your doctor or hospital for the name of your local hospice or contact the National Hospice Organization (NHO). The NHO can provide general information and location of hospices nearest you. The NHO Helpline is 1-800-658-8898 or through the Internet (http://www.nho.org)

Communities of faith offer support to dying persons and their families, including health ministry programs, parish nurses, and clergy trained in pastoral care. Many religious communities also study end-of-life issues, addressing decisions such as stopping medical treatment or using feeding tubes. Ask your religious leader for more information.

In addition to public libraries that provide books and articles on end-of-life issues, your community also may have a consumer health library that offers free health education materials and provides research assistance.

If you belong to a health plan, contact its health education department for materials, including printed information and videos on topics such as decision-making and advance directive forms.

This 45-page booklet provides detailed information about life-sustaining methods, as well as the emotional and spiritual aspects of end-of-life decisions. Cost: $3.50 plus S/H. Call (703)707-0169 for ordering information or e-mail: [email protected]

This 57-page booklet provides a thoughtful, clearly presented overview of many of the major issues facing patients and families at the end of life. Cost: $6.95. Call Twenty-Third Publications at 1-800-321-0411 or e-mail: [email protected]