Grief: A mind/body conundrum

Physician treating a patient. Red-figure Attic...
Image via Wikipedia

This is a cautionary tale.

The main character, a woman of a certain age, became concerned about suddenly being short of breath. Nine months earlier she had defended her title in a 5k community road race, so it didn’t seem to make sense that she would be huffing and puffing after one block on a slight incline. She worried more and more, and finally went to see her primary care physician.

“No,” said the doctor, “this should not be. We’ll start with a stress test to check out the heart, and then go with a pulmonary function test. Recent x-rays haven’t shown anything wrong with your lungs, but we’ll want to make sure.”

The patient aced the stress test, which relieved everyone. Subsequently, at the end of the pulmonary function tests she did the six-minute walk, as instructed, regular pace, and the nurse who had been following along in case she conked out said, “Well, you’ve got no shortness of breath, and I’m exhausted.”

In between, an interesting thing had happened. During a visit with her niece, who is a family practice physician in another state, the medical dilemma happened to come up. “Well,” said the niece, rather gently, “you’re doing all the right things: seeing your doctor, having a stress test first, checking pulmonary function. But when all is said and done you did just lose a sister to respiratory failure, while you were still grieving the loss of another sister almost within the same year…   It could be that your body is just trying to tell you something.”

Almost immediately I felt better. Went ahead with the pulmonary function test just to err on the side of caution, but by then I was feeling so much better that just walking around that hospital corridor at what felt a leisurely pace was still enough to wear out a nurse who is 10 years younger. She hadn’t told me she was required to follow. And of course, at the start of it all, I hadn’t thought to mention anything about sibling loss to my primary care doctor. Communication is good.

Soon afterwards, I attended a meeting at which the keynote speaker was Lyn Prashant, founder of an organization called Degriefing. Among the handouts was a page headed “Common Grief Reactions,” featuring lists of physical, emotional and mental responses to grief. Number 5 under Physical? You guessed it: shortness of breath.

Who knew? Certainly not this writer, who has only spent the past three decades intensely involved with end-of-life issues. Hospice volunteer, part of an AIDS support group throughout the 1990s, currently a chapter board member and client volunteer for Compassion and Choices, author of dozens of articles and one book about end-of-life issues. Never heard of any of those physical manifestations of grief — or if I had, they were too abstract to register.

That was then, this is now: Loss, sorrow, grief — is it all in your head? Maybe not.

Doctors, neckwear & the male brain

Bob-baldric
Dr. Liner in his Baldric

This space is happy to offer up-to-the-minute insights, today’s concerning connections between neckties, germs, the male brain and other organs.

First, reporter Rebecca Smith writes in today’s Wall Street Journal that neckties may be helping spread flu germs, and many people inside and outside the health care industry think they should go.

“The list of things to avoid during flu season includes crowded buses, hospitals and handshakes. Consider adding this: your doctor’s necktie.

Neckties are rarely, if ever, cleaned. When a patient is seated on the examining table, doctors’ ties often dangle perilously close to sneeze level. In recent years, a debate has emerged in the medical community over whether they harbor dangerous germs.

Several hospitals have proposed banning them outright. Some veteran doctors suspect the anti-necktie campaign has more to do with younger physicians’ desire to dress casually than it does with modern medicine. At least one tie maker is pushing a compromise solution: neckwear with an antimicrobial coating.

BUT HOW ABOUT JUST SWITCHING TO THE BALDRIC?

My friend Robert Liner MD, a distinguished physician/piano player/tango dancer/fellow board member of Compassion & Choices of N.CA and general Renaissance man, made this switch some time ago. In rather characteristic Liner fashion, he then established a company which produces Baldrics in order that others may enjoy them.

Earlier Baldrics were worn by most respectable Scots so they would have something handy from which to hang their swords. But for the 21st century, as Liner writes on his company web site:

We are re-inventing the Baldric for present day men and women on the go. I originally conceived the idea of the Baldric as a new fashion statement for men. Instead of a constricting necktie, a man could dress up with a Baldric. Instead of carrying a sword, the modern man could employ his Baldric to carry his sword equivalent: a cell phone, I-Phone, Blackberry or other p.d.a.. Additionally, in place of a bulky wallet, he could keep credit cards, folding money and small personal items easily accessible in a secret pocket in his Baldric. The Baldric is a hybrid: it’s a necktie alternative that performs like a sleek, modified, minimalist messenger bag.

Contacted today about the germ issue, Liner reports he had indeed heard of such. “Of course, it’s seemed to me,” he muses further, “that the more significant problem with neckties from the point of view of health and world peace is the possibility that neckties reduce blood supply to the male brain. This may account for a good deal of what looks like irrational behavior on the part of my sub-species. This can especially be a problem during adolescence and at other times (ie. most of the time) when demand is placed upon the male circulatory system to divert blood to an organ that is not the brain but sometimes functions in place of the brain. Under these circumstances, the male blood stream can hardly afford to have any restriction placed upon the “choke point” by a necktie so that what little blood is left available to go north to the “main brain” is impeded, resulting  in chaos on a global scale.”

Considering the problems of H1N1 and other viruses, and the potential for advancing world peace as Dr. Liner suggests might happen with fewer neckties, this space hereby blatantly endorses the Baldric.

Doctors, lies and half-truths about dying

Is it painful? Will I be okay? Do I have any options? It’s hard to get answers to the first two of those questions about life’s end unless you know a really good psychic.  But as to the last one: Yes. The problem is, no one wants to talk about them.

When they do talk about them, medical professionals ignore reality, dismiss those with whom they disagree, and stop little short of outright dishonesty. For confirmation of this fact you are welcome to skip the next few paragraphs, which are included for the sake of trying to report facts while still a little angry.

A recent panel discussion at the Commonwealth Club of San Francisco was billed as a debate on the ethical issues of making end-of-life decisions. “A Good Death: Intersection of Policy and Practice” featured four experts in end-of-life policy and care. The focus was on palliative care, which has been the Big New Thing in medicine for the past decade or so. Palliative care — read: address the symptoms and keep the patient as pain-free as possible — has been around since about the beginning of time. Someone figured out, though, that if you gave it a fancy name and made it a medical specialty, which it now is, you could encourage doctors to concede that dying is part of the process and that dying patients might be better off, occasionally, if they were not treated to death. This was a step in the right direction.

The discussion, moderated by Steven Z. Pantilat MD, Professor of Clinical Medicine at the University of California San Francisco and Founding Director of the UCSF Palliative Care Program, addressed all of the proper, traditional issues: the importance of having advance directives, the need for open conversations with family and loved ones, the significance of cultural diversity around the end of life. The issues of hastened dying and physician aid-in-dying, of concern to many in the audience according to unscientific exit interviews conducted by several of us, were firmly brushed aside. A majority of Californians favor legalizing physician aid-in-dying and would want that palliative choice for themselves, but that’s what no one will talk about.

Panelists included Judy Citko, J.D., Executive Director, California Coalition for Compassionate Care , Sharon Fernekees-Jeans, Licensed Clinical Social Worker; Manager of Social Work Services and Spiritual Care, Eden Medical Center, Castro Valley, CA. and Kathe Kelly, R.N., B.S.N., O.C.N. City of Hope Nursing Research & Education, Duarte, CA.

“There really is no ‘good death’,” Pantilat said, likening life to a plane trip in which there is intense focus on the take-off (birth), followed by life experiences as the trip and concluding with attention needed for the landing at death. “The medical system wants to keep us aloft forever, with a bias toward prolonging life at all costs,” he said. Palliative care is in response to this philosoophy, which has led to “a source of suffering rather than the relief of suffering. In 2000, it was offered in one in five hospitals; now it is one in three.” Citko, explaining that “people are dying differently than in the past,” said that “today, most people have multiple chronic conditions.” Palliative care addresses this by allowing for curative treatment, as opposed to hospice care which requires forgoing curative treatment.

Panelists talked extensively about the need for advance directives and for conversations about medical treatments and end-of-life wishes.

Then came the audience questions. A number of sincerely posed questions (I read several of them) about aid-in-dying, or hastened dying for those who are near death and might wish to opt out of further suffering, brought this dismissal from Dr. Pantilat: “Regardless of what you say, if they have good care people don’t want that option.” This is simply not true. For 10 years the people of Oregon have shown that they want that option. In a poll taken when Californians were trying to pass a Death with Dignity law, despite well-funded opposition from the California Medical Association (to which a tiny percentage of physicians actually belong) and the Catholic Church, showed that a large majority of Californians want that option.

Citko, along those same lines, commented that there was “an undercover movement” afoot addressing aid in dying. I consider Citko a friend and I admire her expertise, but I had a Joe Wilson moment there. A long-time board member and committed volunteer with Compassion and Choices of N.CA, I am part of no undercover movement. Compassion and Choices is a widely respected nantional nonprofit, absolutely above ground and law-abiding. Among other things, we offer free consultation and support to dying individuals who want to know their options.

Recently I visited a comparatively healthy 93-year-old man who had called Compassion and Choices. He had had gall bladder surgery a few weeks earlier. “I will not go back to the hospital,” he said. “I’ve had a good life, and I want to have a good death.” I talked to him about his legal options should a life-threatening event recur. Shortly thereafter his daughter, a nurse who had met with us and taken notes, sent me an e-mail that sums up why we Compassion and Choices volunteers continue to work for this cause.

“You were like water for a thirsty man,” she wrote. I believe, despite Dr. Pantilat’s assertion that it does not exist, this man will have a good death. I wonder why so many people out there want to deny their fellow creatures such a small, humane thing.

Boomers & the high cost of dying

As health reform slogs along, a few critical pieces are already gone for good — or for now, at least. One of the saddest is coverage for end-of-life conversations; one of the saddest elements of our culture in general and healthcare mish-mash in particular is the tendency to treat death as a curable disease. Timothy Egan, in a recent blog for the New York Times, makes an eloquent case for injecting a little reality into all this.

In the last days of her life, Annabel Kitzhaber had a decision to make: she could be the tissue-skinned woman in the hospital with the tubes and the needles, the meds and smells and the squawk of television. Or she could go home and finish the love story with the man she’d been married to for 65 years.

Her husband was a soldier who had fought through Europe with Patton’s army. And as he aged, his son would call him on D-Day and thank him – for saving the world from the Nazis, for bequeathing his generation with a relatively easy time.

That son, John Kitzhaber, knew exactly what his mother’s decision meant. He was not only a governor, a Democrat who served two terms in Oregon as it tried to show the world that a state could give health care to most of its citizens, but a doctor himself.

At age 88, with a weak heart, and tests that showed she most likely had cancer, Annabel chose to go home, walking away from the medical-industrial complex.

“The whole focus had been centered on her illness and her aging,” said Kitzhaber. “But both she and my father let go that part of their lives that they could not control and instead began to focus on what they could control: the joys and blessings of their marriage.”

She died at home, four months after the decision, surrounded by those she loved. Her husband died eight months later.

The story of Annabel and Albert Kitzhaber is no more remarkable than a grove of ancient maple trees blushing gold in the early autumn, a moment in a life cycle. But for reasons both cynical and clinical, the American political debate on health care treats end-of-life care like a contagion — an unspeakable one at that.

Kitzhaber, having seen the absurdities of the system — Medicare would pay hundreds of thousands for continuing treatments but not $18 an hour for an in-home caregiver to help her die as she chose — was among the thousands of us who were distressed to see the debate get sidetracked by misinformation and outright lies. He knows the truth: that changing the way we treat dying people is the only way real economies and compassionate reform will happen. He is not only a politician, currently running for a third term as governor of Oregon, the state that has shown us the way, but a physician. And he’s smack in the middle of the Baby Boomer generation. Egan cites the recent Newsweek cover article by Evan Thomas, “The Case for Killing Granny,” and its on-target line about this being the elephant in the room, “Everybody sees it, but nobody wants to talk about it.

John Kitzhaber, M.D., politician, and son who watched both parents die in a dignified way, cannot stop talking about it. His parents’ generation won the war, built the interstate highway system, cured polio, eradicated smallpox and created the two greatest social programs of the 20th century — Social Security and Medicare.

Now the baton has been passed to the Baby Boomers. But the hour is late, Kitzhaber says, with no answer to a pressing generational question: “What is our legacy?”

The Way We Die Now – Timothy Egan Blog – NYTimes.com.

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.