Don't spoil the ending: New book stresses dignity for patients, friends and family members facing death
The voice over the telephone is warm and engaging, and uncannily similar to the literary voice in the book In Search of Dignity: A Lifetime of Reflections. Unsurprisingly, both belong to the esteemed Harvey Max Chochinov, doctor of psychiatry, distinguished professor of psychiatry at the University of Manitoba and senior scientist at CancerCare Manitoba. The book being the reason for the call. Despite being the recipient of numerous honours – the Order of Canada being one of many – it’s always the work and the revelations, arising from the almost four decades of research in palliative care he’s conducted along with a team of researchers, on which he’s laser focused and how that data can improve the lives of patients when receiving end-of-life care. In Search of Dignity is a compilation of essays and op-ed pieces – past and present – that explore both personal and professional observations and experiences encompassing that vast body of work that he hopes will appeal to both medical professionals and lay people alike. Chochinov notes that although his work has taken place mostly in the context of palliative care, what’s been discovered has resonance across the entirety of life. “Things like dignity, kindness, understanding personhood and affirmation: Those things are important when you’re nearing the end of life,” he asserts. “But guess what? They’re important throughout the entirety of life. Every health-care encounter is an opportunity for you to either affirm or disaffirm the personhood of the individual that you’re dealing with.” Emphasizing personhood over patienthood has been the central tenet in the Dignity Conserving Care model for providing optimum patient care – looking at the whole person rather than merely seeing them as their medical condition. This is where dignity is redefined, not as how things are done for patients but how they are perceived by their health-care providers. Chochinov and his team began looking at dignity because it emerged from a Holland study that loss of dignity was a notably cited reason that many Dutch patients were seeking “a hastened death.” In Search of Dignity: A Lifetime of Reflections Harvey Max Chochinov Oxford University Press “Up until that moment I always thought of good end of life care as what we do with patients or what we do with families. It’s about a skill set. It’s interactional. Here the data was saying that what’s going on in the mind of the provider, the way that the provider is experiencing that individual, has this profound influence on sense of dignity.” As much as the book concentrates on the research work and how it influences change in medical care through the Dignity in Care and Dignity Therapy training and practices, Chochinov does – though seemingly reluctantly – weave in some personal anecdotes with the professional commentary. He writes about how he subtly informed a doctor about his dying sister’s sharp intellect when she was no longer able to communicate. He revisits the end of life stories of dear friends and takes aim at the destructive nature of depression. Yet he is clear that producing an autobiography was of no interest to him. “A personal biography doesn’t seem all that compelling,” he states. “This kind of vocational biography struck me as more compelling because of the insights it offered. In terms of personal life, of course, you have a deeper appreciation for the fragility of relationships.” He does cite his sister’s experience as an example of where the clinical and the personal did overlap and how this situation demonstrated the beneficial effect of the “platinum rule” – of doing unto others as they would want to be treated or seen, rather than how the health-care provider imagines the patient would want to be treated. “The ways in which failing to see people can cause them tremendous suffering, can lead to these distortions and perceptions that can lead people along a path that is not consistent with what the pa- tient wants or needs,” Chochinov observes. Embracing personhood over patienthood can benefit medical professionals too, he says, pointing to a mention in the book about a nephrology nurse who said after years of work, patients appeared to her like kidneys on legs. “She realized that kind of a mindset meant she had reached a state of practice that was devoid of understanding of the pathos of the human encounter … She realized that she was burning out and needed to take stock of why she had initially gone into this work in the first place.” Chochinov was recently asked by someone if his work would affect the way he approaches his own death. He quipped that it was hard to say as he hasn’t ever died. Taking a beat, he admits that it’s impossible to do this work, especially over the course of decades, and not be deeply affected by it. “I do think it does change the way you live, and change your outlook, and change the appreciation for what matters and what doesn’t.”
