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Our Deepest Fears | Living Wills Can Fail | Surrogates Can Let You Down | A Legal Peaceful Choice | Why Caring Advocates

“Many Care About Me--But None Will Care For Me”

On November 11, 2004, Maryland’s longest serving Supreme Court Judge, Robert Hammerman, died at the age of 76. He died of a self-inflicted gunshot wound to his chest, ironically across the street from the skilled nursing home he never wanted to enter. Far from impulsive, he had made the decision to commit suicide 16 months before. The night before he died, he sent out a 10-page letter to 2200 people. The type-written note that he had been composing for months began, “Dear friends and family, I owe you an explanation…”

The long and rambling letter confused some readers so for purposes of clarity, I have added emphasis to the selected excerpts below:

“The reason is simple – my health. The fear that in the not too distant future I might be committed to a nursing/assisted living facility – a fate I am not prepared to accept…. Alzheimer’s has attacked me. There has been no formal evaluation. I fear it and have not sought one…. [Yet] all the symptoms are in place. For one who all of his life has enjoyed an exceptional memory, it has seen degeneration at a quicker and quicker pace for two or three years or so…. This has been embarrassing and difficult to deal with in all aspects of my life. The most common things – every day – I find great difficulty with…. What particularly grieves me is the loss of memory…. My mind was a total blank as to the letter – and still is to this day…. I thought of a perfect meeting for the Lancers Club. Try as I might, I have yet to remember it…. I could cite so many more [instances].
“The simplest tasks are now becoming more and more difficult to do. Confusion is my daily companion…. I am in a constant state of worrying about my forgetfulness…. For a long time [a neighbor] was forgetful – and then like a light bulb – it was full blown Alzheimer’s…. The thought of Alzheimer’s is dreadful to me. I would need institutionalization.
“There are happily certain people who care about me – but none able to care for me…. In truth, it is breathing, not really living…. To be institutionalized for a period anywhere approaching 10 years would be extraordinarily expensive – a total and tragic waste of ‘living’ and of resources…. ‘the slippery slope to darkness’… the slope is there with me on it….
“The sight of [my judge friend] helpless, being strapped into the bed was more than I could take. Our [mutual] close friend told me, ‘If [Judge _______] knew what lay ahead of him, he would never have let it happen’ …. The awareness that I could become disabled that would require me to be shipped out to assisted living or worse… I could not accept.
“I love life deeply…. There is so very, very much that I want to see unfold, but it is time to leave.”

=== === === ===

Some could argue that Hammerman’s suicide resulted from a Depressive Disorder. His letter mentioned he thought he could have done more in his life, he compared himself unfavorably to his father, and his retirement was forced. Yet the intensity of depression from these issues seems insufficient cause for suicide, especially since the judge still had many opportunities to serve as a “pro-temps” and to continue his active interest in the Lancers Club, the organization he founded; that is, provided he still had adequate mental capacity.

On both the personal and the professional level, I felt compassion for Judge Hammerman’s increasingly impaired mental functioning and his worry about the future consequence of his impending disease. While the symptoms he reported were most likely Alzheimer’s, a thorough medical evaluation could have possibly discovered a treatable cause for his dementia. But I could understand his fear of being tested and his resignation as so little could be done for his neighbor or his friend.

Others could argue Robert Hammerman’s long-considered explanation is an effective argument for “rational suicide.” He documented well his increasing forgetfulness and he had intimate knowledge of the ravages of Alzheimer’s disease through experiencing his mother’s and the other judge’s illnesses.

Certainly, Hammerman’s was a tragic call for a need that is still unmet in our society: Where can you turn if you want to live as long as possible but still be certain that you can avoid prolonged institutionalization in a state of indignity?
Many people worry that if society continues to neglect this huge and growing need, the consequences will be emotional “bankruptcy” to caregivers as well as financial bankruptcy to society.

The most tragic aspect of suicide is that it causes a premature death. Oregon’s Death with Dignity Act was acceptable to lawmakers and voters because it requires two doctors to certify that the patient is terminal, defined as having a life expectancy of six months or less. In contrast, when a teenager commits suicide, the grief is intensified by a whole lifetime of adulthood that has been lost. But to patients with terminal diagnoses, every month, even every day is valuable.

Recall the joke, “Who would want to live the age of 90?” The answer is, “Just about everybody who is 89!” Not always.

Dr. Sherwin Nuland told the story of how a wife reflected about her presently incontinent husband [1994, page 101; emphasis added]. Previously dignified and modest, he had always been proud of his appearance. She remarked that now he had “to be undressed to clean off the filth that profaned the pittance of humanness still left to him… It’s such a degrading sickness! If there was any way he could have known what was happening to him, he wouldn’t have wanted to live.” In contrast to quoting rabbis who often end their memorial services with, “May his memory be for a blessing” [page 242], Nuland wrote about this consequence of the indignity of end-stage Alzheimer’s: “A life that has been well lived and a shared sense of happiness and accomplishment are ever after seen through the smudged glass of its last few years” [page 105].

Judge Robert Hammerman could not stand the idea of spending up to ten years in an institution, strapped to a hospital bed, which he considered would be “a total and tragic waste of ‘living’ and of resources.” Although he wrote, “I love life deeply,” he went on to say, “There is so very, very much that I want to see unfold, but it is time to leave.” Why was it time? In my opinion, ONLY because “There are happily certain people who care about me – but none able to care for me.” --In other words, the reason is that no mechanism could assure him that he would not be forced to live in a prolonged state of indignity.
The judge’s story is similar to the premature death of 54-year old Janet Adkins who died a decade earlier. Since then, extra attention has been given to this disease after the death from Alzheimer’s of America’s “great communicator,” Ronald Reagan, but little has changed.

As baby boomers age, millions of people will arrive at a point in their lives where they might wish for a way that they can feel certain that our society can provide a mechanism “to care for them” in a special way. When they reach a point they decide is far enough down that trajectory of irreversible and progressive indignity, some of them may want to be sure that their proxies will have the power to effectively refuse food and fluid on their behalf. If those diagnosed with early Alzheimer’s can have such confidence in their proxies, then they can choose to live as long as possible rather than feel they must die prematurely, like Adkins and Hammerman.

What kind of mechanism could people who are recently diagnosed with Alzheimer’s have confidence in? --Especially people who do not feel they can identify proxies whose qualities and energies are close to the ideal described in Chapter 9?

First of all, they must believe that external legal challenges can be met. Second, they must have confidence in the specific person and the alternates who will serve as their advocate.

One goal of this book is to delineate the variety of obstacles so that those who wish, can proactively plan to overcome them. Still, many may need some advice, particular at these two critical times: when they are creating their Advance Directives, and when become the designated proxy and must make some tough decisions and see that they are implemented. What might be ideal is a group of counselors whose backgrounds are in law, medicine, and ethics; who have experience working with terminal patients and their families; and who work together as a team.

In addition, for people like Robert Hammerman, who do not have several people they can ask to designate as their proxies, perhaps similar groups of local professionals could make the commitment to serve in the capacity of proxies for making medical decisions. Their role would be similar to that of bank trust accounts who offer an alternative to one person like a close relative as the designated durable power of attorney for making financial decisions. The institutional nature of such an organization, might sound somewhat impersonal at first, be could have several advantages: A clause in the Advance Directive could permit another professional in the group to name her successor proxies so there will always be someone willing and available to serve as the patient’s advocate. An important question is, could this professional “stranger” also be personable and knowledgeable? That should be possible by creating a thorough semi-structured interview so that patients can provide an in-depth view of their personal values and their specific goals as they relate to their last wishes. The combined experience of professionals from several fields could result in knowledge that is comparable to the efforts of close relatives, without as much worry about causing them emotional toll, or if they “love too much.” (The analogy is to tell your dark secrets to a psychologist, or to confess to your priest – whose professional status makes up for their being strangers, at first.)

Perhaps, if Janet Adkins had confidence in such a professional organization, she might have chosen to live several more useful and pleasurable years, and she would have continued to enjoy playing tennis with her son, instead of letting Dr. Kevorkian kill her. Perhaps Robert Hammerman might have been able to see more unfolding of life, and remained somewhat active in his favorite organization, the Lancers Club.

So I end The BEST Way to Say Goodbye-- a Legal Peaceful Choice at the end of life, with a proposal to extend life by establishing an effective social mechanism whereby people with terminal or devastating chronic diagnoses will not have to live in fear and take their lives prematurely, with the hope that their last months or years can be reduced in worry, increased in pleasure, and thereby willingly prolonged. Ironically, the guarantee of a certain amount of control over the timing of dying might in many cases allow patients to not only enjoy life more from less anxiety and worry, but permit them the freedom to decide to enjoy life longer.