The New Old Age - Caring and Coping
November 11, 2010, 9:00 am
Beginning the Most Difficult Conversation of All
By ZOE FITZGERALD CARTER
Courtesy Zoe FitzGerald Carter The author’s mother, Mary FitzGerald Carter, in Vermont in 1985.

I often think back on the tumultuous year that lapsed between my mother’s announcement that she wanted to “end things” and the night she succumbed to a lack of food and water, along with an intentional overdose of morphine.

What, I wonder, could my sisters and I have done differently? Should we have tried harder to talk her out of it? Insisted that she talk to a psychiatrist? Made sure she didn’t have access to lethal drugs or medications?

These are the kinds of difficult questions that face the friends and relatives of sick and elderly people who express a wish to end their lives. As my sisters and I can testify, the emotions stirred up by such a request can be intense and overwhelming. In our case, they ranged from sadness that our mother found her situation intolerable (she was suffering from advanced Parkinson’s disease), to disappointment that she was “giving up,” to anxiety at the prospect of being there when she did it.

Not surprisingly, our first response was to try to dissuade her. Only later did I learn that while this reaction is normal, experts say it is not the most constructive.

“People say, ‘Oh Mom, don’t talk like that. You’re going to be fine,’ instead of pulling their chair up to the bed and saying, ‘I’m here for you. I won’t abandon you. Together we can work through this’,” said Barbara Coombs Lee, president of Compassion and Choices, a national right-to-die organization.

So what should we do when a loved one first expresses a wish to die? Listen carefully, experts say. Respond calmly, and be sure to let your loved one take the conversational lead.

“The first thing is to be curious,” said Dr. Susan Block, head of the department of psychosocial oncology and palliative care at the Dana Farber Cancer Institute in Boston. “Many patients with serious illnesses have transient thoughts about ending their lives. I think what they are often saying is that there is something causing them a lot of suffering or they have worries about what suffering lies ahead.”

“Ninety-five percent of the time a patient brings it up, the request to have help dying fades away if you engage in this listening process,” she added.

What are you listening for? Dr. Block suggests that families work through some possible issues, beginning with the physical. Is the family member uncomfortable or in pain? If that is the most serious issue confronting her, is there anything more that can be done about it?

“Pain can be the easiest thing to address,” said Ms. Lee. “Even if the person is not dying, they can have a disease burden that really affects the quality of their life, like with rheumatoid arthritis. We want to figure out what we can do to make them more comfortable.”

Whether or not physical discomfort is the primary issue, it’s also important to figure out what’s going on emotionally. Is your loved one anxious or depressed? Is hopelessness driving the request to end life? If so, then the patient may not be able to make clear a judgment about this decision.

“Every patient requesting a hastened death in a sustained way needs to see a mental health clinician,” said Dr. Block. “It would be tragic if someone under the influence of depression, who was seeing things as bleak and purposeless, ended their life.”

The challenge, however, is to differentiate between treatable depression and the predictable effects of living with a serious or debilitating disease. “A lot of symptoms of depression are the same symptoms people have with a terminal disease,” said Ms. Lee. “There is a loss of appetite, weight loss, sleeplessness. And then there is appropriate situational depression. You should be allowed to grieve your own impending death.”

Some emotional strains may not be clinical, in the strictest sense. Maybe the family member who wishes to die is fearful because she’s witnessed someone dying in a particularly painful way. Perhaps she worries about being a burden to her family. Maybe she is experiencing a kind of spiritual crisis, a sense of meaninglessness or anger with God.

“Just talking about it and sharing the burden can be really helpful” for these patients, Dr. Block said.

Even after you ascertain that the desire to die seems well considered, the conversation probably has only just begun. In my mother’s case, we talked for over a year about why she wanted to take her own life. She was articulate, persuasive and unwavering throughout. Although she was unhappy about her physical condition — she was by then confined to her bed — she did not seem despondent or clinically depressed.

Instead, as she repeatedly explained to us, she was choosing to end her life because she found her physical limitations intolerable and saw only further indignities and suffering ahead.

Although I was enormously sad, ultimately I accepted that she had the right to make this choice. Two weeks after I called to tell her that I supported her plans, she stopped eating and drinking. My sister and I were at her bedside to the very end.

Zoe FitzGerald Carter is the author of “Imperfect Endings: A Daughter’s Tale of Life and Death.”