“What’s your exit strategy?” a new friend asked me at supper last month. Our conversation was about our hobbies and passions, which for me always leads to extreme statements like, “bicycling is my savior.” I don’t enjoy thinking about how I would find joy in my life if cycling was taken away from me. My answer was “fishing and boating,” but my thoughts unfortunately turned, and headed down the road of reflecting on aging, the loss of health, loss of function, and our common path toward decline.
[dropcap]I[/dropcap]’m a family physician. I’ve been with my practice, The Family Health Centers, on a journey with my patients since 1995. I see my patients’ bodies decline. I feel my own body starting to decline. How do I face this? How do I guide them when I have not been there myself? I do the best I can. I learn from my patients and the stories of their lives. I learn from my friends, family, and mentors in medicine.
My father was a passionate eccentric (some would say crazy) physician who, like many physicians, never considered retirement or that he might have an illness. My mother was his balance with intelligence and good sense that led to his success. I’m the youngest of their children so they choose me as their Health Care Power of Attorney (HCPOA) and full Durable Power of Attorney (POA) just as they entered their roller coaster of decline.
I’d love to tell the adult children of my aging patients that being the point person for their parents’ medical and financial care is fun and easy and no big deal. But, it wasn’t and isn’t usually. I suspect only a few of us are blessed with organized compulsive parents who plan ahead and clean up their lives before the decline.
I have great, smart, considerate siblings, so my parents could have picked any of their children to direct their lives. As the youngest, I was the last to leave the home and knew the older version of them a little better than my siblings. I also have no children myself. Perhaps since my parents were relatively older, it was natural that we had conversations over the years about their vision of themselves in the later years. I knew their wishes well. They really didn’t have to write it down. They picked me as HCPOA. They knew that I knew.
[quote float=”right”]I said, “hey, let’s move you and mom back up to North Carolina. You will be around the grandkids, and we’ll go into practice together.” I hired my father an “assistant” to keep him occupied with tasks tied to setting up our new imaginary practice.[/quote]My father wanted nothing to do with not being able to work, innovate, pursue hobbies, and drink beer. He could never envision himself as disabled in mind or body. My mother’s main goal was to not ruin any of her children’s lives. She had worked and sacrificed herself (stayed married to my father and quit law school) for her children’s success. “Put me in a nursing home and go on with your lives.”
My father had been fairly out of control for several years with active alcoholism and probably a list of untreated mental illnesses. But, with my mother’s skills, they did well. Then mother’s mind went. Untethered, father led them in to an enormous financial mess and then his mind headed yet further into dysfunction. My mother knew her cognitive function was inadequate and asked for help and stepped out of managing their lives. Her decline was slow, passive, and peaceful. Parkinson’s Disease. My father had no insight into his dysfunction and his behavior became increasingly bizarre.
Timing is everything. As HCPOA and Durable POA, you can only step in and take over as your parents allow. HCPOA and Durable POA are not guardianships. You can speak for your parents but they can also speak for themselves. As my father’s mind dysfunction progressed, I met with a lawyer to see if guardianship was possible. The legal definition of incompetence, however, is almost impossible to obtain if a person is functioning independently. He was still a practicing physician.
Eventually, there was a breakthrough. He was malfunctioning just enough to believe me when I said, “hey, let’s move you and mom back up to North Carolina. You will be around the grandkids, and we’ll go into practice together.” I drove down to Florida within a day and picked them up before he could change his mind. We siblings set them up in an apartment near my brother. I hired my father an “assistant” to keep him occupied with tasks tied to setting up our new imaginary practice. My mother had a caregiver who cooked and helped her dress and stay clean. My brother checked on them daily. Their youngest grandchild got to be with them often. I proceeded to sell their home and business which provided the money for their care. We talked daily of work and the practice we were to have together. I got him flying lessons. They both continued their decline but with safety nets in place. We moved them to a higher level of care when timing was right.
[quote float=”right”]Nationally, 18% of adults have an Advanced Directive such as a Living Will, Health Care Power of Attorney, MOST form, or a Do Not Resuscitate (DNR) order. That is an interesting statistic given that 100% of us will die.[/quote]A couple of years later when he was suddenly septic and near death, at a hospital the admitting internist recommended immediate dialysis. I said, “my father has dementia so bad that he can’t work or play or remember when family has visited. No.” We asked for hospice care and brought him back to their assisted living center with his wife. My sister and mother were with him when he died at their apartment. Mother continued her slow decline until she could no longer move, speak, nor eat. It was painful to watch. With a Medical Orders for Scope of Treatment (MOST) form to guide her care at the Skilled Nursing Facility, an infection finally came along that we did not treat and she died.
Nationally, 18% of adults have an Advanced Directive such as a Living Will, Health Care Power of Attorney, MOST form, or a Do Not Resuscitate (DNR) order. That is an interesting statistic given that 100% of us will die. I participate in the Western North Carolina Advanced Care Planning initiative, which has a grant to help create community systems that help people complete an Advanced Directive.
There are many barriers that keep people from completing an Advanced Directive. First of all, death and health decline are not pleasant things to think about or talk to our loved ones about. It is a difficult conversation. Here in North Carolina, Living Wills and Health Care Power of Attorney documents require a notarized signature with two witnesses. It seems challenging enough for most people to take the time to talk with their loved ones and complete a form about end of life. Then they have to organize a trip to a notary with witnesses. Your family physician is the perfect person to have a conversation with regarding Advanced Directives. Unfortunately, visits with your physician are not often structured to allow time for this discussion.
I tell my patients, “we don’t get a choice how we leave this world, but if we are blessed with an option to leave quickly and painlessly once our joys have left us, we should not pass up the opportunity.” Complete an Advance Directive. Pick a HCPOA who knows your vision for life and is emotionally strong enough to honor your vision. Consider a MOST form or DNR to guide caregivers once life’s joy is gone or nearly gone. I have an exit strategy from cycling, but hope I won’t have to implement it for many years. I’ve also had an Advanced Directive and HCPOA since I was 30 and revise it periodically as I enter different stages of my life. I have no children but have friends and siblings designated as my HCPOA who know my vision of my life and who can take over when I can no longer direct my care. I urge you to plan your “exit strategy” while you are in the best of possible health. In the meantime, savor every mile. You may not be able to see the end of the road, but you do have the power to choose some of the turns near the end.
Wendy is a physician at The Family Health Centers, the largest independent family practice in Western North Carolina. Ideally, an Advanced Directive should be completed as early in life as possible and when there is no health crisis.