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End of Life Issues

Community Approach To Death

Pam Kircher, M.D.
Balance Conference, 2002

Death is not quite the taboo topic that it was thirty years ago, but there are still some barriers to acknowledging death both in the medical community and in the community at large.

Prior to the discovery of antibiotics in the 1940s, most people who got seriously ill died. People often died at home, so most people had seen or been affected by a home death by the time that they were a teenager. If a person went to the hospital, it was expected that they would die there.

With the burgeoning technologic discoveries of the last half of the twentieth century, the age at which people died increased dramatically. It began to be seen as a failure of the doctor and, indeed, of the system if anyone died. People who went to the hospital were expected to return home feeling well. The actual death rate (one per person) was ignored. Death was considered an error on someone's part. Death was confined to ICUs and usually occurred in isolation without the presence of family and other loved ones at the moment of death. An entire generation of people grew up without ever being present when someone died. Death became a far-off consideration, not a part of every day life.

That was the situation in the medical profession when Dr. Elisabeth Kubler Ross (EKR) worked at the Chicago hospital where she began talking to dying people. At that time, the medical profession thought that it was "bad medicine" to tell people that they were dying. Families were told, but instructed not to share that information with the dying person. People were dying in isolation even if family members were present. No good-byes were to be said. No "unfinished business" was to be finished. Cheerful masks were to be worn at all times. The dying were uniformly depressed—a condition thought to be brought on by the dying process itself, not by the way that the dying were being isolated and deceived.

When EKR spoke with the few cheerful people who were dying, she discovered that they had been in contact with a cleaning woman that was familiar with death in her own family and who wasn't afraid to let people talk about what was on their minds. These people didn't feel isolated and alone because they had someone with whom they could be frank. Thus was born the whole hospice movement in the U.S. and the move toward being present with the dying.

The first hospice was built in the U.S. in the late 1970s and now nearly every town in America has at least one hospice. The understanding is that hospice is the compassionate answer for both dying patients and their families. However, still, the hospice option is grossly underutilized. Choosing hospice requires that you recognize that, short of a miracle, your life is in its final stages. This seems to be more difficult for doctors to accept than it is for their patients to accept. Even now, patients frequently call the hospice and ask if the hospice will call their doctors to see if they can obtain hospice services. They somehow feel intimidated about bringing the hospice option up to their physicians. It is easier to call a stranger and ask them to bring it up to the doctor. The idea of dying as a medical failure and "taking away hope" is still alive and well in the medical profession. I am definitely not a proponent of telling someone that they have a specific time to live. I have done enough hospice work to say that no one can predict these things. There is way too much involved. And, I have seen what I would call true miracles in my time in hospice, so I never "guarantee" a death. But I do say, if things continue as they are going at this point, it doesn't look as though you will live much longer. If that is the case, are there things that you want to do while you feel strong enough to do them? People deserve the time to prepare for death. The last few days, weeks, and months of life can be the most powerful time in a person's life as they review their lives and make sense of all that has happened. Physicians do their patients a disservice if they do not offer them the support that hospice can give them and their families so that they can have a comfortable and productive last period of their lives.

As more and more people have been touched by hospice care over the last thirty years, there is beginning to be a different view of death in the community. Most people who have observed a hospice death have seen that death is generally peaceful. They often feel much less anxious about their own deaths if they have been with a loved one at the moment of death. People who have visited with loved ones are beginning to see that some of our American values are not the values that we will wish we had embraced as we look back at our lives as we are dying.

There has been a burgeoning of books about death and dying in the past ten years or so. The television series by Bill Moyers, "On Out Own Terms" was very helpful in encouraging people to discuss their wishes with their families. The bar association of Colorado has developed an annual free opportunity within individual communities for lawyers and medical professionals to discuss Advance Care Directives with the community and to provide an opportunity for people to complete them at that time. If you are not aware of an annual event like this in your community, please contact the Bar Assn. or ask your lawyer about it.

I believe that asking about Advance Directives should be a part of every annual exam done by a primary care physician. It is just as important as a vaccination update or a stool blood exam. If it is done in this routine manner, it begins to bring home the message that death is inevitable, but we can retain some control and dignity if we plan ahead. It is a natural part of preventive medicine. In this case, we are preventing things being done to us that we don't want done if we are in a position that we can't talk about it at the time. Because not all eventualities can be foreseen, it is important to have a durable medical power of attorney. That should be someone who understands your wishes and is willing to make decisions for your health based on your wishes (not theirs) if you are unable to express your wishes yourselves. This implies that enough conversation about your wishes has taken place so that your representative can truly carry out your wishes. These frank discussions are a blessing to the loved one representing you because they allow them to be clear about your wishes and not feel guilty after they make a decision. Without advance directives, decisions fall to the next-of-kin that may be too upset and overwhelmed with the situation to be able to consider all of the options and make a decision that you would have wanted.

In addition to encouraging hospices and advance care planning, many communities are also instituting volunteer programs that track people who are not terminally ill, but who are declining physically and may be dying in the next year or two. A pioneer program in Gig Harbor, WA by Dr. Mimi Pattison initiates this process by a single question asked doctors about each patient. "Would you be surprised if they died in the next year?" If the answer is "no," the person is connected with a volunteer who simply checks on them periodically. If the person's health declines, the volunteer may offer more help such as grocery shopping and light chores or companionship. They may take them to the doctor's office if driving becomes problematic. It is one way that a community can truly be supportive of its members who need a little extra help. Most of these people go on to utilize hospice care in the last few months of life. The hospice care option has increased in these communities. I believe that it is not only because potential candidates have been identified, but that people who have received volunteer services realize the value of team support and simply ask for more (i.e., hospice care) when they need it.

There are several things that physicians can do to encourage community awareness about dying issues. They can encourage local churches to view the "On their own Terms" series. They can speak about hospice and advance planning to churches and civic organizations (or ask hospice personnel to do the same.) They can encourage their own patients to attend the annual Advance Care Directives sessions. They can make ACD updates part of their annual exam. And, finally, they can make sure that they and all of their family members and other loved ones have ACDs of their own. It is amazing how many doctors have not completed their own Advance Directives.

Community awareness about dying issues is a reflection of the level of cultural awareness of dying issues. We are moving toward greater awareness, but there is still much to be done. The practicalities of Advance Directives are essential. The outcome will be more peaceful deaths as people realize that their wishes are being observed. Conversations about death and dying among loved ones lead to a greater openness on all topics of deep significance to individuals, and, hence, to a sense of greater connection. The importance of greater connection between individuals is the great gift that the dying have given us. Hence, our attention to preparation for dying will result in richer lives with greater meaning and joy.


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