Your life, your choice:
Advance Care Planning for Serious Illness
Life is good when you talk about death
Cancer was a third wheel in my marriage almost from the beginning. My husband was diagnosed with advanced prostate cancer in 1996, three years into our marriage and three months after the birth of our first child.
Medical literature tells us that prostate cancer rarely occurs before age 40. This was little comfort to my then 39-year-old husband. The internet was relatively new and I read everything I could about prostate cancer. Based on the location, size, and aggressiveness of his tumor, the diagnosis was discouraging. He outlived the odds, but died in 2012. He was 55.
Although I lived with someone with a terminal illness for most of our marriage, we never talked about the possibility of his death. Important issues about his last days were never discussed, like when to stop treatment, whether to allow extraordinary measures, who should be at his bedside when he died and whether he wanted a wake. This lack of preparation was the result of a perfect storm: a patient who believed he could stay alive if he fought hard enough, physicians who did not want to take away hope and a young family that demanded most of our attention and energy. Our silent storm made his final days more difficult, and complicated my grief.
My experience inspires me to share my story in order to help other people view end-of-life differently. I believe my experience with dying and grief could have been better if we had talked more openly about death, if my husband had been helped to understand that his terminal illness was not a personal failure and if I had known his final wishes. Based on my experience, here are three things that need to change in order to transform the way we die:
1. Talking about end-of-life should be as natural as talking about our weekend plans. Death does not need to be scary. Death is the most human of all experiences. Our species has a 100% death rate. But we don’t talk about death, as if avoiding the topic will negate its inevitability. We should share our wishes for end-of-life long before it is imminent. And we should document our wishes so our families don’t have to guess. Our wishes should include not only the extraordinary measures we would want, or not want, but also our wishes for arrangements after we have died.
2. We must stop viewing illness as a fight and death as defeat. This can lead to perverse incentives, where patients pursue aggressive treatment that only prolongs suffering. Modern medicine has become so effective that doctors don’t want to admit that there are some problems they cannot fix. Admitting that someone cannot be cured is not a failure for the doctor or the patient. Choosing hospice or palliative care does not mean a person is “giving up.” Instead, it is exercising the ability to make choices about how best to live our final days.
3. Hospice care providers need to be flexible and modify their plans based on patients’ wishes. Palliative care and hospice care are relatively new medical disciplines and are still evolving. We need to temper “best practices” with an understanding that everyone is different. Hospice care is good at providing a wide range of services, from pain management to spiritual counseling, but should also include training for family members so that they can understand the mechanics of dying and what to expect when death comes.
Talking openly about death will make final days more peaceful for both patients and families and will help the grieving process. Let’s start talking about dying.