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Genetic Linkage

"Dignity Therapy" Paper Ignores Hospice

”Dignity therapy" is a “novel psychotherapeutic approach” that gives patients with a 6-month life expectancy “an opportunity to reflect on things that matter most to them or that they would most want remembered.” In these days of medical experts such as Sarah Palin equating reimbursed end-of-life discussions to death panels killing granny, an outcomes evaluation of any such intervention is essential. Harvey Max Chochinov, of the University of Manitoba and colleagues in the U.S. and Australia did just that. Their impetus: “… although much progress has been made in our ability to achieve physical comfort for patients who are dying, few novel interventions have been designed to address the psychosocial, existential, and spiritual dimensions of end-of-life care.”

In an admittedly difficult-to-design study, the investigators randomized 326 patients (most of whom had cancer) to one of three interventions: dignity psychotherapy, palliative care, and client-centered care (which focuses on the “here and now” as opposed to the past and future perusal of dignity therapy). Their article in Lancet Oncology provides 9 questions that a trained dignity therapist might pose to a patient. Responses are recorded and typed up, then presented to the patient as a “generativity document.” Various before-and-after rating scales as well as patient comments revealed improvement in quality of life and family relationships with dignity therapy, although general distress was not significantly alleviated with any intervention.

Oddly, for Dr. Chochinov is an award-winning palliative care expert, the report mentions “hospice” only as a possible physical setting! In fact, hospice volunteers have been providing dignity therapy for decades.

Just look “hospice volunteer” up on Amazon and many variations on the theme emerge, such as “When Evening Comes” or “When Autumn Comes”. Volunteer training teaches how to encourage patients to think about their past and project into the future, supplemented with continuing education on memoir writing and other creative ways to distract patients by focusing on happier times. The National Hospice and Palliative Care Organization and Growthhouse provide much information on dignity therapy, without calling it that. And of course the approach extends beyond hospice. Just read Randy Pausch’s The Last Lecture, in which the pancreatic cancer patient looks back and ahead with unforgettable wisdom and humor.

Dignity therapy is so obvious that it occurs to patients themselves, as it did for Pausch. That was the case for Glenn Nichols. Community Hospice of Schenectady, NY, “matched” us because of our shared love of writing. Three times a week for 14 months, my hands flew on my laptop as he told me his life story. Then, when we both noticed that his ALS had not yet silenced him, he poured out messages for his wife, son, and daughter, seeing into their futures. Glenn still had more to say, so he then wrote a novel, the quintessential middle-aged male fantasy of touring the southwest with the Allman Brothers, his wife Kathy behind him on his motorcycle, her long hair forming a streak of black, imagery so powerful I can see it still, years later. Glenn accomplished so very much, and left with great dignity, before this most undignifying disease took him, leaving behind his essence in the form of hundreds of pages of generativity documents.

I applaud Dr. Chochinov and his research team in quantifying the perhaps unquantifiable, providing the needed evidence for the benefits of memoir-writing, talking, dignity therapy, whatever you want to call it. I hope that the study will go a long way to counter the dangerous and ignorant anti-hospice rhetoric that Palin and her followers unleashed. But for me, I’ll skip the training necessary to provide dignity therapy, and stick to acting from my heart. Like premenstrual syndrome and the newly-invented low-T syndrome, some of the things that we do or feel just don’t need names.
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