Tag: Medicine

General interest
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Doctors, lies and half-truths about dying

by Fran Johns

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.

General interest/Health/Money
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Cancer, Viruses & Informed Consent

by Fran Johns

A commentary about cancer screenings and surrounding questions posted yesterday brought a thoughtful reader response: “Science, including public health,” wrote davidlosangeles, “is an evolving process.”  Unquestionably so.

What we the consuming public need to understand is not the science as much as the personal responsibility. Today’s New York Times features another story on the front page of the Business section (some of us still follow old-fashioned newsprint) by Duff Wilson about “Research Uproar at a Cancer Clinic”, namely the highly regarded Carle Foundation Cancer Center in Urbana, IL. It’s another instance of respected professionals questioning each others’ respectability — or protocols, or carefulness, to use gentler terms than are actually being used. One of the issues raised is that of informed consent, and here is where we the consuming public come in. Whether we are cancer patients, CFIDS sufferers or mostly healthy people susceptible to the usual ails, it is incumbent upon the individual to know what he or she is agreeing to, and to know as much as possible about the projected outcome. We’re all in a giant clinical trial here on the planet. Nobody really knows about the outcome, but participation in mini-trials along the way can be valuable and is certainly laudable. Just know what you’re doing.

I am a continuing participant in the Women’s Health Initiative study now well into its second decade, though the primary issues are over and done with. I didn’t try any new hormone replacement therapies or drastic lifestyle changes, mainly because I’m pretty wimpish, but I read every word of the small print in the reams of documents that came along and tried hard to appreciate what the pitfalls and premises were. It was a valuable study, and hopefully will continue to turn up usable data.

Other studies are underway, and more will undoubtedly begin, regarding the current hoopla over XRMV, and H1N1. And heaven only knows how many other viruses, techonological advances, genetic possibilities and scientific wonders are out there to create great harm or great benefit.

Since the benefits are to the buyers, it’s appropriate that the buyer beware.

General interest/Health/Money/Politics & Causes/USA
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Healthcare coding for Ayurveda – Why not?

by Fran Johns

Having taken up brain fitness (see below) a few days ago, this space today offers a few notes on Emotional Vibrancy and Wellbeing in this modern day and age. They come straight from a lecture of the same title by Sudha Prathikanti, MD presented by the UCSF National Center of Excellence in Women’s Health and the UCSF Osher Center for Integrative Medicine. Dr. Prathikanti, UCSF Professor of Psychiatry, Consultant in Integrative Medicine and an exceptionally lovely young woman, clearly has achieved balance in her mind/body systems. Plus, she has a power-point lecture clear enough for lay listeners within her mostly-medical-professional audience to comprehend.

Emotional vibrancy and well-being, Dr. Prathikanti explains, “spring from a life lived in balance where one’s spirit is strong and resilient, with the capacity to embrace and grow from the pain and loss which are a natural part of human life.” Whereas western medicine tends to approach disease as a battle to be joined and conquered, she says, almost all other cultures from Native American to Asian have a more holistic approach. If you’re feeling a little out of balance, these glimpses into Ayurveda — the wisdom tradition of India — might help.

Ayurveda, Dr. Prathikanti explains, is a full medical system based on the concept that we humans are made up of the five basic elements (5 Great Bhutas) — earth, fire, water, air and space. We embody three life sources (3 Great Doshas): Vata, Pitta and Kapha. Each dosha has specific expression; we come with all three in unique individual constitutions, and they are initially in balance. It’s when they get out of whack that trouble comes.

OK, perhaps this is sounding obtuse, but stick with it; you may discover something useful.

Vata (air, space, water) is all that moves — the beating heart, the blinking eye, the wandering mind. Pitta (mostly fire, a little water) has to do with heating — those digestive enzymes busy cooking up dinner, the fiery intellect. Kapha (earth/water — think clay) involves all that binds, the joints, body mass, memory. Ayurveda will seek to determine at what point your mind/body function was at its best — say, that summer you worked as a lifeguard on the beach and were doing graduate school classes at night — and keep you in that good balance.

Dr. Prathikanti conjured up three sample people and gave them a case of severe grief to illustrate how the different doshas work when things get out of balance. Vata, slightly built and having a quirky, creative mind, under such stress might wind up jumpy and restless, change jobs too much, have trouble making decisions. Pitta, owns her own business, the fiery mind etc, could wind up smoking and drinking and eating too many hot tamales. Kapha, earthy homemaker, might eat and sleep too much, become listless and withdrawn. The process of recovery would address each of these issues in ways to regain balance.

None of this is likely to make it into the health reform bill. But since we have finally begun to acknowledge that AMA-guided traditional American medicine may not know everything there is to know — Kaiser, when I considered acupuncture recently for a chronic pain issue promptly sent me to their Chinese Medicine class — perhaps a little ancient Indian wisdom will be useful.

By the end of the lecture I had figured out I’m a predominant Vata married to a definite Pitta, and is that good? Dr. Prathikanti assured me that understanding one’s doshas and keeping them in balance is indeed advisable, but she rather gently suggested that having a consultation with an ayurvedic practitioner for starters is wise.

In other words, it’s a good idea to know what you’re talking about. Still, we offer the above as a toast to your health.

General interest/Health/Money/Politics & Causes/USA
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Pills vs. Time: The Power of Patience

by Fran Johns

Another interesting article about slowing down our rush-to-treatment healthcare mentality (see Pills & Perils below) appeared in Tuesday’s ‘Personal Journal’ section of The Wall Street Journal. This one is a lot simpler: do nothing, just wait. WSJ‘s Melinda Beck is writing less about serious afflictions than about the minor problems that plague us all; still it points once again to our cultural tendency to Do Something, whatever it is.

What cures colds, flu, sore throats, sore muscles, headaches, stomach aches, diarrhea, menstrual cramps, hangovers, back pain, jaw pain, tennis elbow, blisters, acne and colic, costs nothing, has no weird side effects and doesn’t require a prescription?

Plain old-fashioned time. But it’s often the hardest medicine for patients to take.

“Most people’s bodies and immune systems are wonderful in terms of handling things—if people can be patient,” says Ted Epperly, a family physician in Boise, Idaho, and president of the American Academy of Family Physicians.

“I have a mantra: You can do more for yourself than I can do for you,” says Raymond Scalettar, a Washington, D.C., rheumatologist and former chairman of the American Medical Association. But, he says, “some patients are very medicine-oriented, and when you tell them they aren’t good candidates for a drug they’ve heard about on TV, they don’t come back. I have colleagues who say, ‘You can take this pill and get better in two days, or do nothing and get over it in 48 hours,’ ” says Dr. Scalettar.

Of course, we know this. Most of us have some genetic strain of either the leave-it-alone-it’ll-be-better-in-the-morning or the shut-up-and-tough-it-out approach to all aches and pains. But we also have those constant messages from the TV set, and increasingly from the computer screen, that say one little pill will make it all better, right this very minute. And we are a right-this-very-minute society.

Almost all viral infections resolve on their own, unless you have a compromised immune system. As a rule of thumb, Dr. Epperly says, infections in the nose, throat, stomach and upper respiratory tract tend to be viral. Infections elsewhere in the body are likely to be caused by bacteria, and those can get worse without antibiotics. About 80% of urinary-tract infections resolve on their own, for example, but about 20% develop into more serious kidney or blood infections. And even if they don’t, the symptoms can be very uncomfortable.

Some chronic maladies follow predictable courses, according to many medical experts ,whether or not they are treated.

Colic is almost always gone in four months. Some 70% of acne is gone three to four years after it first appears. “Frozen shoulder”—a painful restriction of the shoulder joint—is typically painful for three to six months and stiff for the next four to six months, and resolves completely after one to three more months. Temporomandibular joint (TMJ) pain tends to go away by itself in 18 months. Sciatica resolves on its own in three weeks in 75% of cases.

Not many of us do pain and misery very well. As a repeat TMJ sufferer, I can promise you if I tried to wait it out without pain killers for 18 days, let alone months, my entire neighborhood block would evacuate. Pain (see Caitlin Kelly’s Broadside post a few hours ago) is in a category all its own. Actually, though it is hell to pay, sometimes it can serve a purpose. My good husband wound up in the emergency room with a gall bladder infection that would’ve had anyone else, surely including myself, shrieking in agony; he does not feel pain. That is great when you’re young and macho, not so good when you get a few years on you and could use a signal that something’s wrong.

But for the minor issues, things wrong can often right themselves without outside interference. Now… if I could only start over again with everything I should or shouldn’t have taken…

When Doing Nothing Is the Best Medicine – WSJ.com.

General interest/Health/Money/Politics & Causes/USA
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Healthcare: Could We Get A Moral Commitment?

by Fran Johns

Is there a simple way to get universal healthcare in this country? In a word, yes. Or rather, in two words: moral commitment. If we were to make a moral commitment to what is, after all, only the fair, humane, equitable thing to do, author/reporter T. R. Reid told an audience at San Francisco’s Commonwealth Club today, there would be no problem.

Reid, a reporter for the Washington Post, documentary film maker and NPR commentator, was in town to promote his new book, “The Healing of America: A Global Quest for a Better, Cheaper and Fairer Health Care .” In it he tells the story of his journey around the world in the company of a painful shoulder, consultations about which were his introduction to personal encounters with health care systems of every sort. He also met with government representatives and policy makers across several continents.  It is an informative and highly readable (no pun intended, that’s just an appropriate adjective) book.

Reid outlined the four primary models of health care currently in existence on our small planet, each with different versions of who pays and who provides. In Britain’s socialized medicine model, health care is the government’s job and it does both. A “mirror image” of this plan is that put into place in Germany shortly after the country was established in the late 18th century, a “National Health System” in which the providers — doctors, clinics, etc. — are private but the payer — government — is public. Workers are covered through their employers. One advantage to both, Reid points out, is that everyone buys into preventive care. He told of British ads asking passersby if their feet hurt, and urging them to visit a podiatrist right away if so; “It’s free.” Or commercials featuring a coughing “Mum” and giving a phone number to call so a nurse may visit. “It’s free.” Each is aimed at diagnosing other illnesses early, and/or preventing the spread of disease.

The Canadian Medicare (that’s where Lyndon Johnson got the name for our elder care) system now copied by Australia, Taiwan and others would have had Reid waiting an long as a year for consultation and treatment of his shoulder. Although he proclaimed his pain to be a very present issue, it was not seen as an urgent need to the primary care doctor he consulted. It is this often extensive wait for non-urgent care that is most criticized (especially by Americans) about the Canadian system. But Reid got a Canadian answer to that. “We Canadians,” he was told, “don’t mind waiting, as long as rich Canadians have to wait as long as poor Canadians.”

The fourth model cited is the out-of-pocket model, which Reid illustrated with a story of climbing a mountain in Nepal to seek shoulder relief. At the top of the mountain, in an extremely simple one-room building with its four walls painted in four different colors, the doctor explained his payment was generally in whatever the patient could afford. Someone relatively well off might pay in funds, others in whatever they had. Many of the patients could pay only by painting the facility, the doctor said; they seldom had the same color of paint, and thus the many-hued room.

“We have them all,” Reid told a hushed audience: Native Americans and veterans have the British/NHS; over-65, the Canadian Medicare; working people, Germany’s system. But 40+ million Americans have medical care equivalent to Afghanistan or Angola, and tens of thousands of Americans die every year because they cannot afford medical care.

One audience member called Reid on that issue, saying hospitals were required to treat people who came to them, but he was not backing down. True, he replied, if someone is actively dying or about to give birth, hospitals cannot turn him or her away. But for cases (such as one cited at the beginning of The Healing of America) of lupus, or diabetes, or in countless other instances, the inability to pay for necessary care causes ongoing pain and death for thousands.

Other audience questions raised the illegal immigrant issue. In most countries, it simply would not be an issue, he said. Citing Britain as an example, he said “you get (care) whether you’re a citizen or not.” Reid also said the public option is a non-issue elsewhere, because “you don’t need it.” And he threw in another few illustrations that argue for reform: In Britain, you have to cover everyone, you have to pay every claim, and you have to pay every claim fast. In Switzerland, if a claim is not paid within five days, the next month’s premium is free. In Germany you have a choice of well over 100 insurance companies; if you don’t like one, you simply switch to another.

Having set out to answer the question of how other countries provide health care for all of their citizens, Reid said he then turned to the why. Why every other wealthy, industrialized, developed country in the world has universal coverage and the U.S. does not. Others have it, he said, because “they think it’s fairer, equitable, humane, just — and these are moral issues. Health care reflects a country’s moral values.”

It was clear that Reid, like most in his audience, sees the U.S. as having moral values. “If we had the political will,” he commented, “other countries could show us the way.”

But the author was pessimistic about the possibility of universal care coming out of the current reform efforts. Asked how it might somehow come to the U.S., he said it could well be the way Canada’s plan came about; “we might get it state by state.” The Californians listening might have taken heart. Twice that state has passed single payer plans, only to have them vetoed by their governor. Reid suggested that other states might also be ready to implement statewide health coverage.

As to his painful shoulder, its current status was not given. Presumably, it will be necessary to read the book to find out.

General interest
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The Public Option Death Panel

by Fran Johns

Here’s a death panel even Sarah Palin could love — but maybe we’d better not tell her. You, however, will probably understand its value and possibly want to put it to work for your own benefit. It centers around a form called POLST, for Physician Order for Life Sustaining Treatment (in New York it’s MOLST, for Medical Orders) fast catching on across the country. The panel consists, essentially, of your doctor and yourself.

Initially developed in Oregon in 1991, POLST programs are underway in a handfull of states including Washington, California, New York and North Carolina, and are being developed in over a dozen others.

Erin Henke, POLST Program Manager for the California Coalition for Compassionate Care, outlined the program for a group of healthcare professionals this week in San Francisco, part of CCCC’s efforts to get it efficiently established across the state. The key, she emphasized, is the conversation between individual patient and medical professionals. You don’t get the form signed, in other words, unless and until patient and physician have discussed what the former wants: CPR if you’re not breathing? Feeding tube? Comfort care only, if you’re in bad shape, but you’ve got a pulse and are breathing? Or perhaps every intervention possible — tubes, wires, ventilators, the works, including transfer to a hospital intensive care unit. But the point is, you make your own decisions. Once the form is completed and signed, it follows you as part of your medical record. In California it’s printed on Pulsar Pink card stock, and not easy to overlook.

Rollout of the program, Henke explained, is an ongoing process; it will only work when it is widely known and understood not only by individual patients and physicians but also by the many other members of the profession — nurses, caregivers, ER personnel and others. CCCC’s focus right now is on skilled nursing facilities and hospitals, though Henke and the teams of POLST program advocates around the state are working toward a broad educational spectrum.

The basic POLST approach, as explained in a Journal of Palliative Medicine article by Diane E. Meier, M.D. and health care journalist Larry Beresford published earlier this year, is to provide “actionable information on how to honor the wishes of a patient with a life-threatening condition” on a variety of issues. It goes farther than an Advance Directive (though if there’s a discrepancy, the Advance Directive takes precedence) and it differs from an out-of-hospital DNR (Do Not Resusitate) form because it lets you choose treatment.

I asked Henke if the patient/doctor conversation which is necessary in order for this extraordinarily useful document to be completed is covered by most insurance companies. She says that to her knowledge there is no specific code for such a conversation, although she understands there are other codes under which physicians can bill. Let’s hope Betsy McCaughey and Sarah Palin don’t find out. Or Chuck Grassley.

Though I am only terminal just now in the same sense that all of us mortals are, I talked about the POLST form with my Kaiser primary care physician just to be sure we remain on the same page. Wouldn’t it be nice if everyone had that same opportunity.

Health/Politics & Causes
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Health Care that Works: Integrated Medicine

by Fran Johns
President Obama speaks at a Portsmouth, NH event on August 11 (Darren McCollester/Getty)
President Obama speaks at a Portsmouth, NH event on August 11 (Darren McCollester/Getty)

Last night’s NewsHour included a segment that gives me hope: a clip of President Obama citing integrated medical systems that are actually working, followed by an excellent in-depth piece on the Billings MT clinic that proves the point. Billings is only one of such examples.

How do they work? By getting everybody under one roof and coordinating patient care. By letting different specialties work together, rather than sending a patient from one to another to another. By compensating doctors with salaries. This last is a sticking point: if you own a piece of the MRI business, for example, you might just be inclined to order more MRIs. Or you’re tied to the work-harder-get-richer principle. But more and more doctors seem interested in having a life, in not being on call 24 hours a day, in earning good money (integrated system compensations compare well with private practices) while focusing on patient care — without over-prescribing and over-ordering to guard against getting sued.

Why does this make such good sense? Because most patients (not all) sing its praises. Because integrated care saves money by keeping people healthier, reducing unnecessary procedures, keeping people out of hospitals… the list goes on.

My oncologist retired a year after a 2006 breast cancer episode. I went to meet my new choice on the 8th floor of Kaiser Medical Center in March, 2008. She looked at lab tests (2nd floor), spotted anemia, said I shouldn’t be anemic, ordered colonoscopy/endoscopy. G.I. doc (2nd floor) found celiac disease in June, connected me to nutritionist (across the street) and to endocrinologist (6th floor) who helped me design diet plus vitamins etc so I’m healthy again. Physical therapist (4th floor) discussed fitness plans. All of these specialists, my surgeon (2nd floor) and my primary care doc (4th floor) are friends. All respond to frequent e-mails within 24 hours, saving multiple calls and appointments. All post test results, etc on my personal web page. Thus, over a 3-year period: one overnight hospitalization for mastectomy, one out-patient procedure, a reasonable number of appointments, healthy patient.

Not everybody loves Kaiser, or the other clinics being studied. But it’s a model that works.

General interest
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A Story of AIDS & Living Well

by Fran Johns

As he lay dying of AIDS, my friend Michael gazed over my head in the general direction of the bathroom, managed an almost-chuckle and said, “Nahh, not yet.” This was in 1995, on a foggy gray day in San Francisco, before the discovery of protease inhibitors that would alter the course of the disease. Michael and I had sat together at a dozen similar bedsides as members of the same AIDS support group, but he knew the scene far better than I.

Michael’s sister was due in from the east coast that day. In the bathroom medicine chest were the drugs he knew could end his life in hours rather than in the days or weeks he might have left. Michael’s body had grown frail, but his mind and spirit still soared.

AIDS is a terrible way to die. So are any number of other debilitating illnesses. But many of us believe that honest discussion of prognosis, possible treatments and options are not just empowering, but sane. There is a lot of insanity loose in the land.

A study to be published in the August 15 issue of the American Journal of Respiratory and Critical Care Medicine suggests that many surrogate decision-makers actually don’t want doctors to tell them about options and potential outcomes. I say, OK, fine; don’t ask.

But for someone critically ill who wants to know, why shouldn’t physicians be allowed to tell the truth? How likely am I to regain any quality of life? While my bad cells are being destroyed, what other destruction will happen? What if I choose no treatment at all?

Throughout decades of volunteer work with hospice, AIDS and most recently Compassion and Choices (counsel and support for terminally ill, mentally competent adults) 99% of the critically ill adults I have encountered have gained both power and peace from knowing their choices. They could tell you: it is not about death, it’s about living. Dying is going to happen. Living well takes effort.

In the 1990s almost everyone I knew who had AIDS also had a stash of drugs that could bring his life to a swift end. Very few of them used those drugs. Check the Oregon statistics: far more people request life-ending drugs than ever actually use them.

It’s about safety valves. It’s about  personal choice. It’s about control of one’s own life. It’s about living well.

For anyone to oppose the piece of our complicated health reform that provides coverage for critically ill (and other) individuals to gain understanding of their conditions is irrational and unreasonable. If those opponents choose to keep their heads in the sand that’s fine with me; but why deny the rest of us the right to reason?

Michael died that night, without opening the medicine chest. He could have told you he’d had enough. He would have told you that knowing the means to end his suffering was available had given him great strength and a degree of peace for over a year. He would have told you that straight talk from his physician (who also died of AIDS a few years later) empowered and emboldened him in a remarkable battle for life.

It was never about dying; it was about living well.

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