Looking at one's own end-of-life issues

A tough story eloquently told by California physician Martin Welsh adds poignancy to the fight for legalized physician aid in dying, and emphasis to the need for patient choice as a consideration in health reform. Dr. Welsh speaks in clear language of his current dilemma:

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.

For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients’ end-of-life wishes. But after a quarter-century as a firsthand witness to death, I’ve developed my own perspective.

It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.”

That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Dr. Welsh suggests, for himself and others, making a list of 100 things that make life worth living, ordinary things one does every day.

Some are routine, some are “chores,” some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone.

Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.

Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 — is life still worth living? Of course.

But suppose you get to where you’ve lost, say, 90 things, and now with each thing taken away, a bad thing is added…

At some point, no matter who you are or how strong, you can lose enough things that matter — and acquire enough negatives — that the burdens will outweigh the joys of being alive…

Recognizing he’ll reach that point one day, Dr. Welsh looks his destiny squarely in the eye:

…as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.

Celebrations, changes and challenges

The quietude of this space of late is in direct proportion to the activity, at long last!, over at my new blog on True/Slant.com. Boomers and Beyond (you’re invited to visit) looks at issues of concern to seniors and, increasingly also to their boomer children. Health and healthcare, housing, fitness, economic survival, liesure & recreation. We’re open to suggestion. True/Slant is a still-developing all-journalists news aggregate site I think will continue to grow stronger and more useful. With the necessary little www preceding it, trueslant.com/franjohns will take you to my page.

In the meantime, I hope to keep an occasional post over here at the Celebration site. It’s a joy to have a spot in cyberspace on which to ponder anything that might seem worth pondering; it’s even more joyful to get paid (!) for it.

Hope you’ll surf over to True/Slant whenever you can. Hope I’ll still find time to post, here, things that seem too far-out or too quirky to toss up on a serious news site. Over here on Celebrations, I still need to get to the meringue cookie issue.

Palliative Care: Rush Limbaugh vs the Grannies

The patient was in four-point restraint, which means his hands and feet were tied to the bed. He was shouting over and over, in Spanish, “Help me!” but no help came. Until Diane Meier happened upon the scene.

The back story, she learned, was that the man had end-stage cancer for which he had declined treatment. After he fell at home, his adult children had found him on the floor and called 911, landing him back in the hospital. There, among other interventions that were put into play, a feeding tube had been inserted through his nose. When he repeatedly pulled it out, his hands were tied. After he then pulled it out three times with his knees, his feet were tied. You could say these treatments were being performed over the patient’s not-quite-dead-body.

“Why,” Dr. Meier asked, “is it important to have the feeding tube?” The attending physicians answered, “Because if we don’t, he’ll die.”

It was at this point that Diane Meier, M.D., F.A.C.P., already honored for her work in geriatrics and for her personal and medical skills, became a crusader for palliative care. “A light bulb went off,” she told a group of physicians and other professionals in the field today in San Francisco. “I realized it was an educational problem, and thus a solvable problem.” She saw that the doctors and nurses were only doing as they had been taught, and the results were distressing also to many of them. “All I did was say ‘It’s all right to care about your patient.'”

Meier’s pioneering efforts to shift care of critically ill patients from aggressive, often futile treatment to comfort care focusing on the patient instead led to formation of the Center to Advance Palliative Care, which she currently serves as Director. They also resulted in a MacArthur Fellowship she was awarded in September, 2008.

“The MacArthur,” says the self-effacing physician, “was in recognition of the tens of thousands of people working in palliative care.” But those tens of thousands are not enough to have eliminated the tragedies of patients such as the unfortunate man cited above. Walk the halls of almost any hospital, nursing home or similar institution in the U.S. and you will hear the incessant “Help me!” cries of people being treated over their almost-dead bodies.

Helping them with comfort care rather than aggressive treatment, though, is referred to by the Rush Limbaughs of the world as “Killing off the grannies.” It is a handy sound bite, and it is tilting the balance against sanity in our lurch toward health reform. Unless Mr. Limbaugh can convince me I’d rather be 4-point-restrained with a tube inserted in my nose than gently treated with comfort care when I encounter my next critical illness, this particular grannie would appreciate his butting out of my rights. Palliative care should be a right.

It is, unfortunately, a campaign of the political right to keep palliative care out of health reform. They will prevail, Dr. Meier said, unless voices of sanity are raised, whether Democrat or Republican. She urged her audience, representative of a wide variety of compassionate groups, to help get the message out and get the calls, e-mails and letters in. Legislators behind the three bills working their way through Congress, she said, need to hear from the citizenry.

The citizenry is unquestionably in favor of comfort, and where palliative care can be understood it is welcomed. Hosting Dr. Meier’s informal talk were the California HealthCare Foundation, the California Coalition for Compassionate Care, Archstone Foundation and the University of California, San Francisco, four of many organizations committed to making palliative care understood, available and effective.

The question of whether they or Rush Limbaugh will prevail is as yet unanswered. Having Mr. Limbaugh forming our health policy, though, is almost as scary to this granny as 4-point restraint.

Health Reform 101 for Seniors

At an annual reunion gathering of California Senior Leaders today at the University of California, Berkeley, AARP California Executive Council member Bob Prath (himself a CA Senior Leader) made a valiant effort at outlining key segments of the proposed Health Reform bill which are of primary concern to over-50 generations.

Those segments include, in no specific order of significance or degree of complexity: guaranteed access to affordable coverage for Americans 50 to 64; closing the Medicare Part D coverage gap (known to insiders and more than a few others by now as the “doughnut hole”); approving generic versions of biologic drugs; preventing costly hospital readmissions by creating a follow-up care benefit in Medicare to help people transition to home; increasing funding for home-and-community-based services through Medicaid to help people stay in their homes and out of institutions; and improving programs that help low income Americans in Medicare afford needed drugs.

If that list of details seems daunting, it was not so to the Senior Leaders. Word had already circulated that Prath had read the entire 3,000+ pages of the bill, and no eye was going to glaze over. Covering it all, though, despite a carefully prepared power point presentation, was somewhat of a challenge in the after-lunch time whittled down to less than 30 minutes by the irrepressible tale-sharings of the reunion attendees.

Prath was asked, afterwards, for suggestions of where and how anyone over 50 might find concise and useful information, short of undertaking his own feat of studying 3000+ pages. Much, he says, can be learned through Health Action Now, and those worried about exorbitant drug bills can get some good, practical help from a nifty AARP brochure, “Don’t Dump Dollars into the Doughnut Hole.”

More enlightenment from the time-squeezed power point will appear in this space over the next few days.

A Novel Path to Better Healthcare

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.

Health Literacy

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.