Palliative care Archives - Page 2 of 2

November 6, 2009

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.

General interest

September 4, 2009

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.

General interest/Health/Money/Politics & Causes

July 24, 2009

Palliative Care: Rush Limbaugh vs the Grannies

by Fran Johns

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.