Taking charge at the end of your life

Many people fear death because of the dread of pain and suffering, the feelings of abandonment and helplessness. A major tenet of this book is that these issues can be mitigated by approaching them as a family. As Dr. Russell Meier, director of palliative care at Mt. Sinai in New York, observed in the PBS documentary On Our Own Terms,

“How we die, the circumstances under which we die,
what happens before we die is under our control.”

To which I would add:

“Only if you take the initiative to sit down with your family and talk through the facts of life in the last chapter of life . . . while you and your spouse are still physically and mentally able to lead that discussion.”

There are several ways that you can take charge at the end of your life.

First, make it clear to your children how you would approach potential decisions at the end of life. Certainly that is one of the major objectives of the Other Talk, yet in a recent study by the National Hospice Foundation, “75% of Americans have never taken the time to articulate how they wish to be cared for.”

Second, prepare your family for the potential for stiff resistance to your wishes from the medical community. Walter, one of my research respondents, was hounded by the doctors, calling him at work, 3-4 times a week, to keep his father with stage IV cancer in the hospital for more tests and treatments. Another example is my wife, who was accused by a doctor “If you don’t put in the feeding tube, you’re killing her.” Her mother, completely ravaged by Parkinson’s, was having weekly bouts with pneumonia.

Essentially, the traditional mindset of the doctor is to always heal. As a result, the focus is on the illness rather than on you. Here’s how two doctors that I interviewed described the situation:

“There’s always another layer of hope that we’ve created in medicine. We’ve got so many alternatives, if they don’t have to pay for it and there’s no downside, then they don’t want Grandpa to miss an opportunity that he might live.”

“Thanks to medicine’s prowess in sustaining life, it is harder than ever to know when it’s time to die.”

Third, establish your preference for cure vs. comfort when the end is near. Let your children know whether you want to fight for life to the very last breath or live intensely in the time remaining. If you are in the latter group, that means turning to hospice for pain management but also being prepared for psychological problems (anxiety, worrying, depression, fatigue, fear of being a burden) that are actually more prevalent than pain but, in most cases, ignored.

Fourth, create a will that deals with money and property but also talks about unresolved emotional issues within the family. Then be sure to cover all the items that you have put in the will during the Other Talk. Not taking this last step could profoundly and adversely affect your family for generations.