Personal Choice: Caring for the End of Life

By Tom Dooling, Esq.

Fall 2008

Sooner or later, we all die. Sometimes death comes quickly and unexpectedly; sometimes it carries us off gently to a better place. But because of improvements in modern medicine, frequently doctors can keep us alive much longer than otherwise would have been possible.

And sometimes, doctors can keep us alive when there’s really no point to it, and all that’s happening is death is being postponed.

In the last few decades, many people have reacted strongly to the thought of dying in a hospital on a

respirator, with stomach tubes in our nostrils, needles in our arms, and catheters inserted to carry off our wastes. Many people would rather die naturally, at home, in their own bed, with their family around them. Control over when and how we die is intensely personal. No one wants somebody else to decide when to give up, turn off the ventilator, withdraw the feeding tube and pull the plug.

Making the decision for someone else is equally a very hard thing to do. The problem isn’t helped a lot by the fact that another unintended result of a law intended to protect our privacy, the Health Insurance Portability and Accountability Act of 1996, more commonly known as HIPAA, can also serve to separate us from the people we love best when we’re alone in a hospital bed, in pain and afraid.

Very personal choices In Montana, everyone has a right to choose whether they want their life prolonged artificially or to die naturally. And everybody has a right to have the people they care for and who care for them be able to visit them in the hospital. But because these are very personal choices, it is necessary to make those choices while we still have the ability, the capacity to do so.

Under Montana law, people with capacity can create a declaration under Montana Uniform Rights of the Terminally Ill Act. That declaration tells doctors that if a patient is terminally ill and is going to die within the next few days or weeks, no artificial measures to prolong life should be undertaken. But if you are terminally ill and have not made such a declaration, somebody else may have to decide. For people lucky enough to have living parents, a spouse, children, or brothers and sisters, the decision can be made by them. But for people who have lived in group homes all their lives, whose closest friends are their house mates and staffs, it’s a different story.

Without an advance directive giving a trusted friend, close relative or preferred staff a durable medical power of attorney, which allows him or her to see you and make decisions about your health, the decision about when and how you are going to die may be made by somebody who doesn’t really know you.

The situation is complicated even more by the fact that some doctors and some hospitals give up a little more easily, a little too quickly, when their patient has a developmental disability. Do not resuscitate Sadly, doctors who don’t know a person with a disability may think their quality of life is so low that there isn’t much point to keeping them alive, so they write “do not resuscitate” orders, which say that if a person with a disability stops breathing or their heart quits beating, no effort will be made to get them going again.

Over the last two years, Disability Rights Montana has helped eight people with disabilities who were in the hospital dying. The doctors and, in some cases, the families had given up, and the decision had been made that it would be in the patient’s best interest to die.

“The patient has suffered long enough,” one doctor wrote.

But six of those eight people are still alive and living active and happy lives because someone took a second look and determined it was too early to give up. Disability Rights Montana urges all “caregivers” and all people with disabilities to create advanced directives to make sure that when the time comes, people who care are making the right decisions.

Every person with a disability who can communicate and understands about living and dying can create an advanced directive. Staff should encourage them to do so and check every year to see if one is still appropriately in place. And every person with a disability, who can, should also execute a Durable Medical Power of Attorney, choosing the person they would like to have by their bedside if they were sick and maybe dying in a hospital.

Tom Dooling is a former staff attorney with Disability Rights Montana.

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