Your Decisions on Medical Care at the End of Life

Talk openly with your loved ones while you’re still well and use advance directives to maintain control.

Just as you want control of your everyday decision-making during your life, you want it at the end of your life. 

Anne, a 59-year-old woman with advanced breast cancer, completed an advance directive when she was 50 to retain control over her end-of-life decisions, according to a report in the New England Journal of Medicine. 

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Anne wrote down what she wanted before she was diagnosed, but just after her parents died unexpectedly from lung cancer and a stroke. Her advanced directive included the instruction that she would not be intubated if she was terminally ill, and that legally her only her sister would make that decision for her.

Anne also wanted to discuss treatment options that would give her maximum time with her family, and wanted to pursue therapy “that (would) help her make it to next spring ‘and beyond.’”

“Anne's primary care physician needs to take the lead in initiating conversations about her goals,” the report said. “Anne has opened the door to conversation. A starting point at (a doctor’s) visit might be to review the advance directive that she completed nine years ago and to explore what is most important to her, helping match future care and treatment to her goals.”

That’s the advantage of an advance directive. 

“Americans are a people who plan…. The one area that most of us avoid planning is the end of our life,” adds a report by the Family Caregiver Alliance (FCA). “Yet, if we don't plan, if we don't at least think about it and share our ideas with those we love, others take over at the very time when we are most vulnerable.” 

If you’re ill and need to consider how you want your end-of-life treatment to go, completing an advance directive before you get to that point is a good place to start.

You need to confront your fears first, which could involve (among other matters) the possibility of pain, loss of dignity during treatment, not being clearly understood, being alone, being overly sedated, leaving unfinished projects behind, and dying in a strange place. 

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“Once you know that you want to explore these topics and make some plans, most experts suggest that you begin by talking,” the FCA adds. That means talking openly with family and friends about how you want the picture at the end of your life painted. 

You should also ask your doctor when you can talk about “ideas and questions” concerning end-of-life treatment and medical decisions. 

“Tell him or her you want guidance in preparing advance directives. If you are already ill, ask your doctor what you might expect to happen when you begin to feel worse. Let him or her know how much information you wish to receive about your illness, prognosis, care options, and hospice programs,” the FCA says. 

The National Institute on Aging (NIA) concurs that the simplest, “but not always the easiest,” way is to talk about end-of-life care before an illness. 

“As hard as it might be to talk about your end-of-life wishes, knowing your preferences ahead of time can make decision-making easier for your family,” the NIA says. “You may also have some comfort knowing that your family can choose what you want.”

A durable power of attorney for healthcare form and a living will are other forms of advance directives, as is a do not resuscitate order. Durable power of attorney for healthcare lets you designate a specific person or persons to make medical decisions on your behalf if you can’t. A living will is instruction to health professionals in general on matters such as resuscitation. A do not resuscitate order, or DNR, tells hospital staff not to perform life-saving measures, such as CPR.

After you complete your advance directives, you should review them periodically to make sure they still reflect your current wishes. You can easily complete new documents to update your instructions; the changes become legally binding.

Whatever your medical condition, “understand that you have the right to make your own decisions about your care,” the FCA says. 

“There is much that we can plan and attend to in advance of our own death,” the FCA adds. “We can make our wishes known about where we want to be, who we want to be with and what we want to happen to us and around us.”

“But financial and legal planning and medical advance directives must be made with the knowledge that some day other people will have to implement our wishes and live with the results. For that reason our plans should, when possible, allow for flexibility and trust in the discretion of our surrogates.”

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