Cycles of Living and Dying . . .

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19
Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices CA, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re  California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 

 

The Public Option Death Panel

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.