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.