J Canc Educ (2013) 28:392–393 DOI 10.1007/s13187-013-0480-2

REFLECTION

Reflections on Palliative Care Clare Wilmot

Published online: 18 May 2013 # Springer Science+Business Media New York 2013

“Ira Byock, do I qualify for your consultation?”, I asked my good friend and professor of Palliative Care at Dartmouth Hitchcock Medical Center, as I lay hot and fevered in the Cancer Floor’s “bubble”, the positive pressure unit, where patients with neutropenia are housed. He said, “as far as I know you are not terminal, but you qualify on a level of complex and serious disease”. I was trying to put a code to it that my health insurance would pay for and not deprive me of the coddling I wanted, as I battled acute myeloid leukaemia. As a surgeon in a rural hospital, with a committed colleague, also a friend of Ira’s, I had used the palliative care model to sort out a tribe of doctors, nurses, social workers, clergy, carers, family members and of course the patient. This particular consultation stands as a beacon for the complexity and clarity of the palliative care process. This patient was blessed not only with his mother’s longevity but also her peripheral neuropathy that had reached his knees. He had fallen, broken his hip, had it repaired and then had a hard time with rehab. He started to ulcerate his heels and legs. We tried outpatient care, but soon progressed to inpatient care and consultations to evaluate his vascular as well as his neurological problems. He became a urological emergency due to BPH and the palliative care doc was brought in. His team evaluated him on his goals, his personal micro culture and a full look at all the problems. The meeting with all concerned was a masterpiece in organisation. Family members were summoned, one of whom was heavily pregnant. The meeting was a blockbuster success. The patient took the lead and he moved with his wife and pregnant daughter to Boston, where all spent the next year. He did lose his leg. The race was on between his grandson and him, to start walking again. I kept in touch by phone. He was genuinely delighted with the process and the outcome.

C. Wilmot (*) The North Country Home Health and Hospice Agency, 536, Cottage St, Littleton, NH 03561, USA e-mail: [email protected]

I had envisaged this process for my own care. I wanted to do it proactively to help my family adjust with me, to possibly not having me. Ira’s team was a blessing. The first day, Reiki practitioners with cool hands came and cooled my fevered legs. Massage therapists were respectful of the fact that I was not someone used to being touched by professionals. I came to look forward to their magic hands. Every Friday for the next year (off and on), I was serenaded by a harp in the hands of a very modest, compassionate musician, who, some days, could see my innards were miserable, and who made me close my eyes, whilst she played my favourite pieces. I could often feel the guts begin to relax and de spasm and move, to reduce the pain of an ileus. The in-house artist would talk with me, made me draw and paint and, when too weak, ask me to describe a scene of serenity and she would paint it beside me. She became a kind presence that would always leave me feeling artistic and wanted. After a few weeks in hospital, I went into remission, went home and started the pre-bone marrow transplant phase. I did paint and draw at home and had harp music as a background music, with my husband, family and friends all over the world holding me in their hearts and physically caring for me my strength returned and my heart lightened. My clinical team was the main event, but Ira kept sending his PA to check on nausea, pain and fevers. He sent his social worker, with whom I had worked, at a prior hospital, and who shared every bump in the journey with my husband, my children and I. The routine floor nurses, LNA’s and social workers, dieticians and doctors, dozens of them, visited daily. It was a busy and very upbeat place. My children brought friends, pictures, musical instruments and we forgot I was ill. During the first bone transplant, which followed some awful chemotherapy and total body radiation, I had mouth ulcers and nausea. As luck would have it, I developed an idiosyncratic reaction to a fluoroquinolone. The numbers of them I had prescribed in the past was legion. What a shock when I developed partial rupture of both Achilles tendons after 5 days of the fluoroquinolone!

J Canc Educ (2013) 28:392–393

This was the time, when a new person walked into my room with a pointy beard, a back pack and a gentle manner. He introduced himself as the resident poet and asked if it was OK to talk with me. Rapidly, I was drawn into his schemes, and I became a writer of poems. Every two weeks, he would spend an hour with me. I wrote poems and submitted them without success to The Hippocrates Award. The award was a British prize for medical providers, both inside the NHS of Britain and outside, in the rest of the world. I had two more transplants. After the third, I recovered well enough, to go to UK and stay with my ailing parents. The Faculty of the Hippocrates Award were in nearby Warwick University. I visited them and asked if I could discuss poetry in medicine with their students. They listened to my story and asked me to submit a presentation to their next award ceremony. My fifteen-minute talk was accepted and I went to The Wellcome Trust in London and gave a patient’s eye view of my palliative care experience at Dartmouth Medical Center. The international level of excellence in poetry, scholarship and connection was extraordinary. Medical students, doctors, nurses, therapists and dentists from all over the world, who spoke English, were there, reading their own poetry, discoursing on the stress relief it provided. The Greek keynote speaker, who is a surgeon in war zones, said it best: “I cannot drink, so I write poetry”. Afterwards, I was approached by a physician from Dartmouth, who had also been a patient, elsewhere, was a poet and currently on the Faculty at Dartmouth Hitchcock Medical Center. This was an extraordinary coincidence. The twining of his love of poetry and skill at writing it, his friendship with Ira Byock, the frisson of global interaction and joining with others, who felt the same, constituted a fellow traveller within an enormous possibility. The congregants shared and bore witness to the universality of writing, art and music to make people better, beyond the body. In my own experience, the arts helped with my symptoms, distracted me about the reality of nausea and really

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helped me eat. Writing at mealtimes was like having a friend that encourages me to try the food that was so unappealing and smelled so dreadful. Gaining a little weight helped me suffer less. Eating is enormously helpful, during the recovery time, between ghastly therapies. The positive experience assists with compliance in therapies. Taking pills after food is often the only way to keep them down. Writing about the smell of dirt in the potato with the thought it grew in Idaho or Maine a year ago was distracting and helped me eat it. The fear of the meal, became the written memory of the meal and decreased the anxiety of eating. The pleasant response to a pantoum about mushrooms made me laugh. A sickly Thai woman in the next room waved at me and sent her poem over for me to read. It brought tears to my eyes. She spoke only enough English to tell the nurse to give it to me. I am not sure who translated the words for the resident poet, but he recorded her speech in poetic form and pleased her and me, through the kindness of the nurse. My take on all this is that, as palliative care is paid for to improve the path of the patient through the grisliest of experiences, with reduction in futile treatments, so the therapists in art, music and writing should be paid to transfer the angst into cognitive and positive experiences. Cancer survival, cardiac therapies and long life after physical trauma in war and on the streets of our homes are chronically debilitating and depend on others for activities of daily living. Structured therapies, like massage therapy, physical therapy and occupational therapy, are studied by compassionate people, who become certified to work safely with vulnerable and sometimes dying people. The people are paid for through obscure codes for insurance companies. I really suggest that the arts in therapy should be more central to severely ill people, whether they survive or not. The arts should be part of the palliative care consultation. No one should have to write a grant or do a bake sale for “therapeutic care”. Palliative care can work with normal care and make the patient’s experience “extraordinary care”.