Category: Death and Dying

compassion and choices/Death and Dying
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Two guys in one hospice room

by Fran Johns

Hal is down to about 80 pounds, blind, bedridden, unable to feed himself, incontinent for the past six years and in a VA hospice. There he receives good care and dozens of daily meds that keep him alive. At the request of a friend of his, I visited him recently to talk about his options. They are, essentially, keep doing what he’s doing – or let what’s being done to him keep on being done – for as long as his remaining cells agree, or stop eating, drinking and accepting all medications but pain control and shorten that period ahead. As it turns out, Hal, a long-time supporter of aid-in-dying, chooses the former; that is surely his right.

As I was leaving, though, the man in the other bed asked me to talk with him. “I heard everything you said,” he told me. “I’m dying. It’s taking too long. Can you help me?”

Well, no, I can’t help him much at all. And that makes me sad for us both, as he is clearly in need of help: pain control, advocacy, methadone, comfort care and social contact. The latter two he is getting to the extent possible; round-the-clock methadone, which is what I think he really wants, is not exactly mandated by the VA. But somebody should be listening to him a little more carefully.

Joe, I’ll call him, since he didn’t ask me to share his story, is 66 but could pass for older. He has cancer in his liver and elsewhere, he says. “It’s pretty much all over, but I think it started in the liver. I’m in a lot of pain. I get a shot of methadone every night at six and that helps for about three hours; after that I just try to hold out until the next shot. I don’t want any more of this.”

Joe reached over, opened a drawer to the little table beside his bed and pulled out several folders. He has an appointment for dental work in three weeks, and is scheduled to begin chemotherapy. “How can they make me do all this?” he said. “I don’t want any dental work, and I don’t want chemo. I just want out of the pain.”

At some point, many of us just want out of the pain, and welcome death as the inevitable way out. Others of us, luckier or sometimes wiser, welcome death because its time has come and that’s what we mortals do, we die. Might not always be the worst thing that happens.

The hospice where Hal and Joe are is part of a huge VA medical center at which excellent care is provided. Since I know nothing of Joe’s history, and since everything I know about the medical center is positive, I can only assume they are doing the best they can for him. Perhaps they see him getting better, going home – although he told me he has no home, no family, no close friends – or to somewhere outside the center’s campus. At a sprawling center staffed with skilled, caring people whose aim is to heal and to cure, there may be few people available to talk to Joe about dying, or to help him gently do so.

A lot of progress has been made toward end-of-life care, but the ability to face death with honesty and compassion eludes us. And until we find a way to do so people like Joe will be around to break the hearts of those who meet them.

compassion and choices/Death and Dying/End-of-Life/Health
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Dementia, the last taboo

by Fran Johns

Dementia, the elephant in the conversational room, has begun to lift its trunk and trumpet around. Ask anyone over 60, or almost anyone whose parents are over 60, to list the Big Fears, and dementia will be up there at the top. But precisely because it defies solution, can’t be predicted and won’t go away, it has long been among the great taboos for meaningful public discourse.

Perhaps that’s beginning to change. There are a few answers emerging as alternatives to warehousing, or being warehoused, in an institution somewhere when Alzheimer’s or other dementia takes over. Some of them make very good sense. All of them require consideration with a cold, clear eye while still sane and healthy, and that’s when the elephant in the room needs to be shoved aside so conversation can happen.

At a recent meeting of advocates for improved care and expanded choice at the end of life, a small group gathered to discuss raising awareness for Compassion & Choices, one of the leading organizations addressing these issues today. The talk quickly turned to the subject of advance directives – everyone in the room had such documents in place – and from there to dementia.

“I suppose if my Alzheimer’s gets really bad I won’t care any more,” said one, “but I absolutely hate the idea that the images my friends and family will be left with won’t be images of who I am at all.” Said another, “To me, it’s the money. I just don’t want every last penny I want to leave my family going instead to some nursing home.” And a third added, “My husband has promised to slip me poison.”

Actually, there may be better solutions, even if they remain only partial solutions. Compassion & Choices now offers a “Dementia Provision” document that may be attached to one’s advance directives, stipulating that in the event he or she winds up with dementia the signer declines all measures that would prolong life. Author/ethicist Stanley Terman is taking this concept farther (devising stronger, more explicit instructions) for those wanting to avoid prolonged life after dementia strikes. While I don’t always agree fully with Dr. Terman (except for his inclusion of a story of mine in The Best Way to Say Goodbye; I don’t get royalties) I applaud his dogged search for answers, partial or absolute, to a problem that defies easy solution. The conversation is also being aided and abetted by some good new books, including John West’s The Last Goodnights, and everything starts with the conversation.

If the conversation continues, the elephant may leave the room.

Death and Dying
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Transiency

by Fran Johns

The sad thing about John Updike’s being dead, other than the loss in general, is the loss in literary size. Like my #1 literary hero Reynolds Price, Updike could do it all: novels, essays, short stories, poetry, critiques, nonfiction, it was enough to make you want to hang up your computer forever. But the other thing, Updike being almost exactly my own age, is the timing. When I read his obituary I was just back from a trip east to give a eulogy for my greatly beloved sister Mimi (Updike was, in fact, exactly in between Mimi’s age and mine) and working on a eulogy for my also beloved old, old friend, JoAnn. Those being two eulogies too many for one young year.

Mimi had grown frail with a multiplicity of complaints in recent years, and did not have a lot of enthusiasm for a long decline. So when a cluster of strokes and heart attacks lifted her rather swiftly heavenward it was probably fine with her, if not good for the rest of us. JoAnn, though, was six years younger than Updike, a hearty, joyous soul who had survived breast cancer decades ago and a recurrence somewhat later. One night she sat down on the edge of her bed, readying for a night’s sleep. Some tiny something, a piece of plaque somewhere, broke off into her blood stream and the next moment she was dead. Most of us would sign up for this swift, painless exit, but not right now please.

Being very kind to one another has taken on a new urgency. Planes crash, fires and floods and earthquakes happen, people who are supposed to be here suddenly aren’t. Being kind, spreading a little ray of joy when you find one, noticing the smell of approaching rain – so the IRA has tanked and the stimulus package can’t be fathomed; still, maybe it’s worth paying attention to the smell of almost-rain.

A few blocks up Arguello Boulevard from our house, in the storied space that is now the Presidio National Park, sculptor Andy Goldsworthy recently created a breathtakingly lovely new work titled Spire. Made of trees felled in the effort to return the Presidio to its natural state, Spire is surrounded by newly planted young trees. As those trees grow, they will eventually cause Spire to disappear, blending back into the forest. It’s all a part of this mystical effort to keep the planet spinning as intended: forests come and go, the universe continues. Which seems quite a comfortable arrangement.

John Updike could have worked this into a darned good story.

Death and Dying/friendships
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Sorrow

by Fran Johns

When my daughter Pam was 17, she had a group of incandescent friends – Julie, Catherine, Kim, Martha, Polly and others – who lit the spaces of our lives. They went on to college, jobs, marriages and adventures, lost track of each other at times and got back together at high school reunions. They encountered heartaches and obstacles, found success and contentment and joy.

A few weeks ago, Kim’s daughter Ally, who was born within several months of my own beloved first granddaughter, died in an auto wreck. She was 17. Ally was, according to all reports from her grief-stricken friends, one of those incandescent teenagers herself, a pretty, outgoing, church-going, clean-living young woman of limitless promise. It is an unfathomable sorrow. Akin to the ache that envelops the room as those photos of smiling young service men and women roll silently across the NewsHour screen every Friday, with only their names, ages and hometowns suggesting the overwhelming sadness that their loss now creates.

When Pam and Kim and the others were about 17, their friend Mark was killed in a motorcycle accident. The only son of a very dear friend of mine, I remember Mark as filled with a more macho but equally vibrant incandescence; his loss remains, especially for his family and for those contemporary friends, a giant sorrow.

Here, though, is what sorrow does. It unites. It makes humanity understandable, it makes gentleness essential. Why would anyone who knew Ally or Mark ever want to be unkind? How could any of us fail to cherish the people we see and the day we greet?

It does nothing to lessen the loss. But whether we knew them or not, this is a parting gift from Ally and Mark.

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