Does there need to be specific language in an advance directive regarding Alzheimer's?

Yanotk asked...

I recently had some brain seizures (non-epileptic, determined to be encephalitis) and as a result, I had an Advance Medical Directive (AMD) prepared, which I now realize doesn't deal with Alzheimer's disease. As a result of my seizures I spent a lot of time in hospitals, rehab centers and assisted care and observed several people with Alzheimer's disease. I don't feel that there is any quality of life involved and I would prefer having a "comfortable" death as defined in a New York Times Sunday Magazine article recently.

My question is, is there standard wording in an AMD related to the desire for a "comfortable death," in the event of Alzheimer's disease happening to me?

I guess what I am looking for is going to a hospice which would administer drugs for a short-lived period. Can a person, or his/her agent, make such a request and would the request be upheld and done?

From what I gathered from the article putting someone into a hospice for a comfortable death occurs frequently, but it seems to me that many of the Alzheimer's cases I saw, the people were in good physical health. Is that a problem in relation to a comfortable death scenario?

Expert Answer

Barbara Repa, a senior editor, is an attorney, a journalist specializing in aging issues, and the author of Your Rights in the Workplace (Nolo), now in its 10th edition.

Your question, and what you witnessed from the inside out, highlight the serious gaps that exist between the legalities of medical directives and the realities of disease and medical care.

The forms and formats for advance directives differ somewhat from state to state"”but most allow the make to direct medical care decisions if he or she is: close to death from a terminal condition or permanently comatose. A few states add in various other medical conditions, such as being "close to death," or "experiencing extraordinary suffering."

The "problem," as you point out, is that Alzheimer's patients, even those in the late stage of the disease, do not meet the technical requirements of these directive, which only go into effect at the end of life, and only when the patient is unable to express his or her wishes. In fact, many of those diagnosed with Alzheimer's live on a decade or longer after the diagnosis.

The same issues arise with hospice care, which by definition, usually only begins once a person is diagnosed as having six months or less to live.

But all of this is not to say that you should not complete an advance directive specifying the medical care you wish to receive and naming another person to oversee those wishes.

If you are concerned about care during the late stages of Alzheimer's, be especially mindful of the provisions that address comfort care"”or care aimed to relieve pain and discomfort, which is also called palliative care and most often the type of care that hospice provides. Some directives also invite those completing them to add more detail describing the kind of care they want to receive if they are in a particular condition. And that would be the place to record your feelings about your care if diagnosed with Alzheimer's. If your state does not solicit these freeform comments, it still may be wise to put your thoughts in writing and attach them to your completed directive.

And while it's not essential to appoint another person as your healthcare agent to oversee your care if you can't express those wishes, it may be important to name someone you know and trust for the job if you are concerned about Alzheimer's.

Finally, do not neglect the essential step of informing other essential people"”all of the doctors who regularly attend you, family members, close friends, and any healthcare agent you name"”about your wishes and making sure they know about your directive.

Going through these hoops may be the best you can do to ensure that you receive final medical care in keeping with your wishes, whether or not you are diagnosed with Alzheimer's disease.