Only about 30 percent of us have prepared a healthcare “living will” to give loved ones and healthcare providers our intentions for medical care when we can’t communicate and are close to death.
This seems to be another paradox to the notion that we are moving towards healthcare consumerism, a world in which people want to take a more active role in their care.
If there is ever a good time to have a say in your care, it is at the end of life when families tend to be the most dysfunctional, providers are looking for guidance and the costs are highest.
Why do so few people take the opportunity to exercise control?
“We don’t do death very well in the United States,” says Sherry Henry, an advanced practice nurse who provides palliative care, or end-of-life care, at Piedmont Hospital. People tend to be uncomfortable talking about dying and reluctant to think about the realities of something that will happen to all of us, she says.
Hospitals and other healthcare institutions are required by federal law to promote and support the use of living wills, commonly called healthcare advance directives. Patients at Piedmont are asked on admission if they have a living will and, if they don’t, if they would like free help in preparing one.
Nate Brown, a lead patient representative at Piedmont, estimates that he is called to complete about 25 advance directives a month for patients and their families. Depending on how much the patient has thought through the answers in advance, it can take from 10 minutes to an hour. Occasionally he is contacted by people in the community, who aren’t hospital patients at the time, and he will complete the advance directive for them and keep it on file.
The advance directive, a legal document, lets the patient voice their wishes, even when they can no longer speak. “It is so wonderful when you can ask a patient what they want,” says Sherry Henry, referring to having the advance in hand for a patient who can no longer communicate, when family and providers are struggling with what to do next.
Doctors are trained to keep people alive, says Dr. Leigh Hamby, a board certified general surgeon and the Chief Medical Officer for Piedmont Healthcare. The healthcare system is generally programmed to keep our heart beating by any means necessary, unless we say that it is okay to stop.
My grandmother decided it was time to stop in her mid-80s after seven years on kidney dialysis. With her quality of life diminishing and her body rapidly failing, one day she told her doctors that she wouldn’t be continuing her three-times-a-week dialysis treatment. The decision meant that within days she would go into a coma and die.
After an initial attempt to change her mind, the doctors agreed and the staff at the nursing home did all they could to make her comfortable. Family flew in from all over and enjoyed several days of visiting and sharing a lifetime of memories before my grandmother gently went to sleep.
Sometimes being a good consumer is about knowing when to say “enough.” Unfortunately, many of us wait until it is too late.