I’m Not Afraid of Death, but I’m Afraid of Dying

I’m not afraid of death, but I’m afraid of dying. I’m afraid of having full awareness but being trapped in an unresponsive body and having no ability to interact with the world around me. Conversely, I’m afraid of having a fully functioning body which lacks the cognitive skill to participate meaningful with my environment. I’m afraid of pain, social isolation and the loss of dignity that comes with having to rely on others for the most basic of tasks like wiping my own bottom. There’s so much to be fearful of. For these reasons I listen carefully to the arguments of euthanasia and assisted suicide.

With advances in medicine, people are living longer than at any other time in history. As we advance in age, our fate is largely determined by medicine and our ability to perform the eight activities of daily living – being able to, without assistance, use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk. In addition, if you cannot shop, feed yourself, do your own housekeeping, do laundry, manage your medications, make phone calls, travel and handle your own finances, then you cannot safely live independently. When our health fails, we will need help.

At that point, the goal is to have a satisfying quality of life. But the problem is that we prefer not to think about it. We may have saved money for old age and trust that the people we love will make sound decisions on our behalf. But most of us are not fully prepared.

Most often we think of three options: an assisted living facility, living with family members, or traditional nursing homes. I’m reading of alternative models of care in which people live in “pods” that look more like college dorms than a nursing home, shared private housing, and intentional community housing consisting of people of varying ages.

Most people think that entering hospice care implies a passive resignation to death. I’m learning that hospice care often prolongs life in addition to providing an improved quality of life. Palliative care is specialized medical treatment for people with serious illnesses. Its goal is to improve the quality of life for the patient and the family. We have a right to good palliative care at the end of life to control pain, reduce symptoms of illness, and support psychological and social well-being. One study showed that people who saw a palliative care specialist stopped chemotherapy sooner, entered a hospice sooner, experienced less suffering at the end of their lives and lived 25 percent longer than the people in the study who did not see a palliative care specialist.

We need to have more conversation about our end of life preferences before it’s too late. Wise people will have prepared a living will, also called an advanced directive, regarding their end of life wishes rather than leaving it to the doctors or family members to guess. They will also have declared a power of attorney for who will make decisions for them in case of an emergency. For help with a living will, I recommend a tool called “Five Wishes” that can be accessed through www.agingwithdignity.org.

So, how do we have the tough conversations about end of life care? According to Atul Gawande, in his book Being Mortal: Medicine and What Matters in the End, you ask and listen to the following questions: If time becomes short, what is most important to you? What do you understand your prognosis to be? What are your concerns about what lies ahead? What kinds of trade-offs are you willing to make? How do you want to spend your time if your health worsens? Who do you want to make decisions if you can’t?

After reading Being Mortal, my thinking shifted. Assisted suicide may be an option left on the table, but the focus is quality of life as we age. Atul Gawande makes the point that our goal is not a good death but a good life to the very end.