End of Life Decisions

I’m sad to hear news that Senator John McCain passed away at the age of 81. He was diagnosed with brain cancer last year. He spent the final months of his life out of the public eye, reflecting on the meaning of his life and accepting visitors. He planned his own funeral services. Senator McCain made a decision to discontinue medical treatment on August 24, 2018 and died the next day in his home surrounded by his family.

Senator McCain had a rich, satisfying and meaningful life. In a memoir published in May, Senator McCain wrote that he hated to leave the world, but had no complaints. “It’s been quite a ride. I’ve known great passions, seen amazing wonders, fought in a war, and helped make peace. I’ve lived very well and I’ve been deprived of all comforts. I’ve been as lonely as a person can be and I’ve enjoyed the company of heroes. I’ve suffered the deepest despair and experienced the highest exultation. I made a small place for myself in the story of America and the history of my times.” He bravely made a decision to stop life-sustaining treatment.

How does one come to a decision to discontinue medical treatment, knowing that it will hasten death?

The right to refuse end-of-life care was guaranteed to Americans in 1991 with the passage of the federal Patient Self-Determination Act (PSDA). It guaranteed that Americans could choose to refuse life-sustaining treatment at the end of life.

When you choose not to receive aggressive medical treatment, you are generally choosing what you believe will be a better quality of life, rather than a longer life that may be less pleasant. You have decided to stop futile, unnecessary or invasive treatment that may harm more than help.

You are still entitled to palliative care, which can be administered to people who don’t want to be kept alive. Palliative care focuses on relieving pain at the end of life but does not extend life. You continue to receive medical treatment that is aimed at comfort care, not cure, designed to treat pain and suffering.

When to stop aggressive cancer treatment is a very difficult decision. Many believe that cancer patients should not be subject to harsh and painful treatment. Yet, three out of four cancer patients in their last month of life, under the age of 65, received aggressive treatment and only a handful got comfort-based hospice care instead. Dr. Otis Brawley, the American Cancer Society’s chief medical officer said “there are hundreds, if not thousands, who undergo too much therapy and too much suffering for every one person that we have who ends up having a miracle.”

Are people who choose to stop medical treatment just giving up? No. You’re not giving up if you don’t do treatment. You’re still fighting for your life, in a different way. You’re fighting to have good, purposeful, meaningful days. It is a patient’s right to make these decisions for themselves.

It is a reality that some patients are unable to make this decision. They may lack sufficient knowledge regarding their condition. Or, their condition may involve cognitive impairment. Ideally, this decision is based upon information about the patient’s clinical state and circumstances, the available research evidence as well as patient’s values and preferences, including their preference regarding their role in decision making. Some people prefer that others make a decision for them.

It can be overwhelming to make healthcare decisions for someone who is dying and are unable to make their own decisions. Even when you have written documents, the documents may not cover every situation that arises. According to the National Institute of Aging (NIA), two approaches are useful. First, put yourself in their place and try to choose as they would choose. This is called “substituted judgment”. Second, is to decide what would be in the best interests of the dying person. This is known as “best interests”. If possible, combine both approaches.

NIA also recommends that if you are making decisions for someone at the end of life and are trying to use one of these approaches, it may be helpful to think about the following questions:

• Has the dying person ever talked about what he or she would want at the end of life?
• Has he or she expressed an opinion about how someone else was being treated?
• What were his or her values in life? What gave meaning to life? Maybe it was being close to family—watching them grow and making memories together. Perhaps just being alive was the most important thing.

If you are struggling with end-of-life decisions, I strongly recommend you read Understanding Healthcare Decisions at the End of Life at nia.nih.gov. This guide includes questions to ask your doctor and medical staff, practical advice on issues you may face, family involvement, working with medical staff and more.