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.
Fran, thank you for writing about the meeting at the Commonwealth Club. As a Palliative Care physician, who dedicates my life’s work to easing the suffering of patients at end-of-life in the manner most consistent with their wishes, their life values, to help them “write” the final chapter of their life in a manner consistent with the manner with which they have lived, I have to admit I am saddened by the message that apparently came across.
My work, my colleagues’ work in palliative care works expand options for patients facing their mortality: hospice is part of the work we do, not separate, as is alleviating suffering of patients undergoing life-sustaining treatment.
Choices at end-of-life are not about “doing everything” or doing lesser than everything. Instead, the choices are about what kind of everything – I see my work as seeking to design healthcare to the person’s personal values and condition: for some that choice is to “go out with a fight no matter what”, for most, however, it is to maximize dignity, comfort, and to even heal and attain goals (legacy, closure, travel, etc.) into the final moments of life. For many, to not burden family or society is a major influence in decisions.
We have learned a lot from the last decade of law legalizing physician-assisted-suicide (PAS) in Oregon. Including in this discussion is that with this law protecting the act, more patients feel enabled to discuss their suffering, their wish for control and choice at end-of-life with their physician. We also have learned that of those who speak with their doctors, less than 10% actually act on that choice when they are eligible (patients without limited prognosis, or with depression, etc. are excluded from the choice.) The legalization of PAS has opened the door for people to speak about their suffering and gain assistance in the alleviation of pain, shortness of breath, nausea, isolation, fatigue, demoralization, etc.
Death is always hard, as is birth. I agree with you, that while it is never an easy experience, it also holds the potential for intense healing, for resolution, for discovering the sacred. In order for this to happen, all facing its approach must courageously dive into the suffering of life’s loss to discover the resilience of humankind. When considering the legalization of PAS, this too must be considered: just as demanding life-infinitum through ongoing intensive medical interventions bypasses the confrontation with this sacred period in life, does expediting its process through PAS give others a different means to circumvent this intense opportunity to heal, even when no physical cure is available?
So, a few last points: hospice is not separate from palliative care, it is part of its offering. Alleviating suffering for all, through a humane, dignity-enhancing care that addresses not only the body, but also the needs of the mind, spirit and community, through the collaborative work of physicians, nurses, social workers, chaplains, aides, caregivers, psychologists, volunteers is what defines this emerging field. And I leave now with some thoughts from Deepak Chopra’s recent post, and those of others on the same Washington Post “On Faith” blog: http://newsweek.washingtonpost.com/onfaith/panelists/deepak_chopra/2009/11/can_dying_be_a_peak_experience.html
Thanks, Suzana, for the thoughtful response. I strongly support both palliative care and hospice care (and hope I made the distinction clear without implying the two are separate or incompatible.) The heart of Compassion & Choices is summed up in your response — maybe you have worked with C&C in some cases. Thanks also for the Chopra link. While I don’t fully agree with his commentary (I’m a Christian who certainly doesn’t see any lottery aspect to the end of life) there’s much wisdom there. Maybe I can find a minute to comment on THAT Q&A/essay.
Fran’s article is brilliant, as always, and the last paragraph says it all. Brava, Fran!
End-of-life choice is a small (but immensely valuable) humane thing. Thanks, Merla, for the invitation to repeat that line.