The retirement center where I live is gradually being transformed into a warehouse for patients with advanced Alzheimer’s disease. Independent residents are being relocated, rooms remodeled, and security doors and systems installed.
Patients with severe dementia are fed and tended as well as possible in their individual situations. They’re entertained, offered social stimuli and activities, and encouraged to exercise. Otherwise, they’re painfully observed as nature takes its inevitable course and they slowly wither away and die.
As I reported recently, more than 5 million Americans have Alzheimer’s/dementia. On average, a new case develops every minute. When they die, a third of senior citizens have some degree of dementia. Beyond the personal toll on friends and loved ones, government programs of Medicare and Medicaid pay two-thirds of the long-term care costs for patients who die with end-stage dementia. We all pay dearly. Differently. In every case.
I don’t ordinarily make New Year’s resolutions. But this year I resolve to do what I can to stimulate interest in learning how mentally competent people can protect themselves from dying later from the ravages of end-stage Alzheimer’s.
In a word, the open secret to self-protection is “preparation;” derived by paraphrasing the proverb: A stitch in time saves nine. Prior to the 1970s, a mentally incompetent persons’ affairs could only be legally managed via guardianship. That was a cumbersome and sometimes slow court process requiring proof of incapacitation and the need for protection. When a judge was satisfied, a guardian was designated.
Guardianship didn’t allow for previously competent persons to designate their wishes in advance of becoming incompetent. In other words, at least supposedly, guardians began protecting their wards with a blank slate. Prior wishes and desires for future health care didn’t endure through the guardianship-court decision and were contestable. Decisions were made using a best-interest standard: Given his current situation, what decision would best serve an incompetent patient’s best interests?
The durable power of attorney concept was created in 1969 by the National Conference of Commissioners of Uniform State Laws. In 1980 the Uniform Durable Power of Attorney Act (UDPA) became law. Today all states recognize some version of durable power of attorney.
In health care, the durable power of attorney (dpa-hc) process begins with a competent person designating someone to act as her health-care agent, or advocate as its also called. The agent, presumably knows and understands the person’s values and goals. If/when she becomes temporarily or permanently incapable of making or expressing her own wishes, the agent is empowered to step in and make them on her behalf.
After finding someone who agrees to act as a health-care agent, the competent person fills out a dpa-hc form, available free on line, in clinics, hospitals, doctors and lawyers offices. There is no need for a court or an attorney to become involved in a dpa-hc.
The final step in the process is the competent person and her health-care agent signing the completed form. In Michigan, the signatures must be witnessed by two people who are not relatives or involved in health care.
I recently changed my health care agent. My new agent, two witnesses and I completed the form while having a beer and waiting for our food at our weekly old-guys dinner get together. We all signed the dpa-hc form. It was a done deal.
Copies of dpa-hc have the same legal standing as originals. On admission, hospitals and health care facilities are required to ask for a copy of the dpa-hc. I have plenty of copies of mine and make sure all who might need them have one.
In the future, in piecemeal fashion, I’ll have more to say about the principles of durable power of attorney and self determination in reducing the dread and emotional and financial costs of dealing with incurable conditions like advanced Alzheimer’s disease.
I’m encouraged by the progress being made in law and science as our generation builds on the legacies of the past in bring humankind out of the dark ages.