Category: Death and Dying

Death and Dying/Dying Unafraid
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Modeling how to die

by Fran Johns

My remarkable friend Mary died yesterday, after showing us how to do it. Not when, mind you, because she was far too young and energetic, just how. How to question and oppose, to look at options, and eventually to accept the fact that life is fine and finite and go with grace into whatever lies ahead.

Diagnosed with pancreatic cancer barely a year ago, Mary began what would be a studied exploration of traditional and alternative interventions to see if she might wrangle some extra quality time on the planet she had carefully nurtured throughout her life. Almost as importantly – most importantly to her host of concerned friends – she and her husband Tom signed up on CaringBridge. Immediately, her host of friends also signed on, forming a sort of cybercircle around the family.

As the journey progressed, they would post pictures and notes about their travels and travails, filled with exuberant photos, irrepressible humor and a clear-eyed view of our shared mortality. Friends and relations would sign in with their own comments. Sometimes the latter would include off-beat ideas for something else to fling in the face of the disease; more often they would be notes about how Mary and Tom were brought spiritually into other circles when they couldn’t be physically present. Sometimes they would be long and rambling; more often they would be simple affirmations of how the couple and their family were being held close in so many hearts.

It was an extraordinary gathering. With their three grown children and a few others on site, there was relatively little taking-of-casseroles over these months, though Mary was always the first to show up with a giant jug of homemade chicken soup whenever some affliction struck at my house (and many others.) The cybercircle kept us regularly informed, assured us that we were part of the journey, and served, I believe, as a constant reminder to Mary and Tom that dozens and dozens of their friends were at their virtual side along the way. It helped that both of the central characters – and they were central characters in all the best senses – were thoughtful and eloquent writers.

While preparing for a new round of treatment, Mary and Tom learned that her tumors had returned with a vengeance. So instead of setting out for one adventure they settled in for another. Hospice was called in, their children gathered even closer. Postings in cyberspace documented the passage of those days, from occasional sunset walks into the nearby hills to readings of comments from friends, as Mary grew weaker, that might win what Tom described as the ultimate honor, “the coveted arched eyebrow.”

As she died, Mary’s family fluffed the pillows and “administered magic drops and potions, all of which helped only sort of.” Afterward, Tom opened the window as a friend had prompted, “to free her spirit, not that she needed any help from me” and hung their Revolutionary War era ‘Liberty’ flag out front. And sent a final note into cyberspace for the ever-expanding circle of friends: “All hail, Mary, so very, very full of grace.”

compassion and choices/Death and Dying/Healthcare
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A Novel Path to Better Healthcare

by Fran Johns

Here’s a revolutionary idea: “Ask the patient.”

This suggestion was made recently by the President’s Council of Economic Advisors Chair Christina Romer in a speech on “The Great Credit Freeze and the U.S. Economy.” The talk was all about improving healthcare while slowing down the growth of its cost. We know we can’t reduce costs, Dr. Romer said; what we hope to do is reduce the rate of increase. And one way to contain healthcare costs might be to find out what the patient wants. Imagine.

This comment was not in direct response to a question, but could well have been. Dr. Romer was asked, by more than one audience member, about how to address excessive expenditures at the beginning and end of life. A grossly disproportionate share of costs, she conceded, “are spent on the last six months of life. And one thing we’re not doing enough of is letting patients express what they want.”

If the issue were not so grim and sorrowful it would call for a “Well, duh.”

It would be hard to find many people who would say they’d like their last few days on this planet to be spent semi-conscious or in pain and distress, hooked up to a tangle of wires and tubes in a blue-lit hospital room. But this is in fact the system we have created: we focus on prolongation of life without regard to quality, we aid and abet doctors who equate death with failure, we never talk about our own mortality as if in silence we can become immortal. Most of us would choose to die at home, properly medicated for pain and surrounded by our loved ones; most of us will die in an institution

Audience members had a wide assortment of questions, and Dr. Romer had plenty more to say. But finding out what the patient wants, and acting accordingly, is surely one excellent path towards better care – and even contained cost growth, and everyone in America could begin that process today.

It is an easy solution, even if only a small, partial solution, to this piece of the muddled medi-puzzle of our healthcare system: talk. Tell your doctors, caregivers, loved ones what you do or don’t want. Write it down. Use the forms universally available (Advance Directives, POLST, others.) You might even wind up with what you want in your final days. Christina Romer is on your side.

compassion and choices/geriatrics/Healthcare/physicians/seniors
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Health Literacy

by Fran Johns

Health Literacy, which is as much about common sense as about the three R’s, can nevertheless be a matter of life and death. Rebecca Sudore M.D. covered the issue in a recent talk to a group of healthcare professionals and volunteers in which she included video clips and verbal summaries of cases that bring chills: a woman who didn’t know she was having a hysterectomy until after the fact because she was afraid to ask questions, people who suffered or died simply because they could not read the details about medications or procedures. Health Literacy may be a field still in its infancy but it is a topic, as well as a separate professional discipline, for which the time has come.

Dr. Sudore, whose youthful energy and unassuming demeanor belie an impressive list of credentials in geriatric scholarship and practice, is passionate about the subject. Among the messages she shared, here are just a few:

Health Literacy is defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.” In other words, if you’re sick or wounded, it’s a pretty good idea to understand what should or should not be done to you – and literally millions of Americans do not.

Millions? Really? Yep, between 40 and 44 million of us are somewhere around a fourth-grade learning level, cannot read signs or medication bottles, poison warnings or the schedules of city buses. Try to imagine making it through the day, if you were in this group, with a bad cold or an infected finger. Another 50 million or so of us are hanging around 4th to 8th grade level, which means we have trouble with “executive functions” such as simple forms or reading a magazine. I hold an advance degree, and don’t even get me started on the difficulty-with-forms issue. If that form, though, means whether or not you agree to a hysterectomy it’s a lot more serious than exchanging data or filing your taxes. Healthcare workers, and sometimes family and friends, must pick up where education or language skills leave off.

Patients, Dr. Sudore explains, are critically hampered not only by lack of education and skills but by shame, fear and a host of other issues. Doctors, often part of the problem, are hampered by lack of time and health-literacy training, and other issues of their own.

Dr. Sudore and her fellow crusaders are out to change all that. They preach keeping messages simple, using plain language, an “Ask-Tell-Ask” method of communicating. Dr. Sudore was pleased, recently, to encounter a physician who caught himself hurriedly saying “Any questions?” to a patient and then corrected the phrase as she had told him, “What are your questions?”

It may be a way off, but Health Literacy is gaining ground.

Death and Dying/Family and Friends
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Missing Uncle Porter’s Funeral

by Fran Johns

His buddies, John F. Kennedy and Lyndon Johnson, are on either side of my Uncle Porter in the photo. Uncle Porter is smiling the sly grin embedded in my heart, his arms around the other two, who are leaning in close, perhaps to catch one of the pearls of country wisdom he regularly doled out or – more likely – waiting for the punch line of a good joke. The photo was sent a few years ago by his daughter Lynn, who had made copies for her cousins; it occupies a prominent spot on my refrigerator door. It is pure Porter Hardy, Jr. In those days he was a U.S. Representative, Virginia gentleman, country farmer and my favorite uncle.

But I missed his funeral. He knew this in advance. I had moved to San Francisco toward the end of Uncle Porter’s life, a long way from his home in Virginia Beach but really not a difficult trip in those pre-9/11 days of air travel. Uncle Porter had escaped one brush with death a few years earlier – he was a heavy smoker for many long years – but had reached a point at which his lungs and his life were fast coming to an end. My sisters and I, along with other family members, were talking about making arrangements for the funeral, which seemed likely to be soon.

I had always loved talking with Porter across the miles, but the conversations of late had been brief because his lungs wouldn’t allow many words. After one such conversation, as I hung up the phone my husband said, quietly but reasonably, “Why are you waiting for his funeral?”

I picked up the phone and called him back.

“Uncle Porter,” I said, “I’m not coming to your funeral. I’m catching a plane this weekend instead, if that’s okay with you.” The old, familiar cackle responded. “We’re not going anywhere,” he said. “It’d be good to see you.”

A few days later I was on a plane to Richmond. I picked up a car for the short drive to the retirement home Porter and his wife, my lovely Aunt Lynn, called home in their late years. The waters of the Chesapeake Bay, where Uncle Porter taught be how to pick up softshell crabs at ebb tide, and the flat countryside once the site of the nearby family farm where he taught me to milk a cow, are nearby.

We spent a memorable hour, that afternoon, sharing family stories with all the breath he could muster. That night we had dinner in his room, cut short because his energy was gone, but the next morning he was well enough to join Aunt Lynn and me in the dining room. I would not take all the gold in California for those moments.

Two weeks later my husband and I were having breakfast at a London hotel, where we were staying during a long-planned visit. In the International Herald Tribune we read of Uncle Porter’s memorial service in Virginia, attended by fellow farmers and fellow dignitaries, along with a host of friends and all of my family. True to my word I had missed the funeral. But I had lived something better that I would wish for everyone: a goodbye hug and some cherished memories . I look at the picture on my refrigerator, and can imagine Uncle Porter chuckling over the joyful time we snatched from the jaws of death.

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