Health Care Decisions: Will Your Wishes Be Known During End-of-Life Care?

Caregiver, patient expert
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In my view, everyone over the age of 18 ought to have appropriate health care and financial documents that will assign a trusted person to speak for them should they, for whatever reason, be unable to speak for themselves.

But most people wait until they're well into middle age before taking care of this important legal work.

For those who die young, or are disabled because of an unexpected event such as a car accident or ill-fated dive into an unfamiliar lake, it’s too late. Their families may have to fight in the courts and in hospital wards in order to carry through with the decisions that they believe this young person would have wanted them to make.

For those fortunate enough to live well into middle age, life experience does tend to indicate that appointing Powers of Attorney for financial issues and health care is wise. And even then, many still put it off.

Marianne McCarthy’s story: A case of early onset Alzheimer’s

“My husband Ron, a lifelong academic, was diagnosed at age 56 with younger onset Alzheimer's disease (also known as early onset Alzheimer’s disease or EOAD) while he was still teaching. We’d always combined our finances, and though we were not wealthy in any sense — academics at small colleges and social worker spouses do not make a lot of income — we were good managers of the financial part of our lives.

“Fortunately, we saw the signs and symptoms that Ron was having cognitive problems before a formal diagnosis was made, so we postponed the visit to a neurologist until after we had signed both health care and financial documents. If we had waited until after Ron’s formal diagnosis, he would have been legally considered incompetent and would have been prevented from signing the appropriate forms.

“The third elder care attorney was the right one for us. She told me I needed to be concerned not only about Ron's health care and death, but my own possible death, as well, since we had a dependent child. It was time to find our son a guardian.

“Just six months after the EOAD diagnosis, Ron suffered a near fatal heart episode of sinus arrest ('Your husband died but we resuscitated him') with a subsequent history of grand mal seizures every four to six weeks requiring emergency medical care for potentially life-threatening difficulty with breathing. Thank God for the discussions Ron and I had about health care and the legal documents to prove it.

“Ron's illness was very expensive. Our life often required weekly and monthly doctor visits for monitoring. The copays for this constant medical oversight were expensive, yet I was grateful that we had the documents in place to care for him. His decline was devastating on us all, and I am proud that we continued to do just as much as possible to keep him alive until the last four months of his life when we knew it was time for comfort care. Ron died at age 62.”

Gratitude for having done the legal work

Marianne says that she’s still not over the experience, and certainly not over Ron’s death. She never will be. She wonders about the future of her son with his genetic connection to EOAD, and her own future, financially. Yet she’s grateful that they continued to search for an elder law attorney who could help them get their health care and financial documents in place so that at least the legal issues were off her shoulders.

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Carol Bradley Bursack is a veteran family caregiver having spent over two decades caring for a total of seven elders. She is a longtime newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories as well as a contributor to several additional books on caregiving and dementia. Her websites can be accessed at www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook Minding Our Elders.