Julie Lanoie, MA, RN, hospice and palliative care nurse and consultant*
This guest blog’s video by Julie Lanoie reflects on the use of stories while caring for her grandfather during the last years of his life. It is a thoughtful, deeply touching and powerful presentation that would benefit everyone who is concerned with death and dying. As Julie states, people reveal their values, their fears, their regrets, their proudest moments, their greatest loves, and so much more through their stories.
As listeners and witnesses, we can help facilitate the use of story as a healing tool. Through the stories of one family, this presentation, originally designed for hospice volunteers for the Home Care, Hospice, and Palliative Care Alliance of New Hampshire, illustrates the power of story to support people living with dementia and those who love and care for them, the power of story to contextualize our experience of loss and promote healthy grieving, and the role of story in preserving intergenerational relationships. So…What’s your story?
*Contact information: firstname.lastname@example.org
When Breath Becomes a remarkable first-person memoir by neurosurgeon Paul Kalanithi that follows his transformation from being an outstanding neurosurgeon and scientist to being a patient diagnosed with stage lV lung cancer. It shares in detail the challenges of the patient doctor relationship and the eventuality of facing death. It is a must book to read to understand the intense training that physicians undergo to reach the top of their profession. It also explores in detail the challenges facing patients and all of us when death stares us in the face.
Dr. Kalanithi’s drive was to be the preeminent neurosurgeon and scientist. When diagnosed with stage IV cancer, he receives the best scientific treatment at Stanford University Medical Center. His stellar treatment also illustrates medicine’s disregard of the healing process and how the patient may contribute to his own healing process. Even though the initial diagnosis appeared hopeless; nevertheless, he responded well to the cancer treatment. It is at this point the superb scientific Western medical approach failed him. The failure was the medical culture of the hospital, his oncologists, and most importantly his own lack of somatic awareness. He did not listen to his own body crying out: “I am exhausted.”
When reading the book, I was shocked to realize how little he appeared to appreciate factors that suppressed the immune system. He continued to be stressed to the extreme through working, working and working. After the initial recovery, he went back to the same pattern which had preceded the initial illness instead of respecting the biological regeneration process so that he could support the recovery of his immune system. He totally focused on performing surgery without listen to the needs of his own body.
When he initially recovered from the cancer after the disease had regressed, he decided, “I would push myself to return to the OR (operating room). Why? Because I could.” After a month, he was again operating at nearly a full load. As he stated almost every evening he ended his days “exhausted beyond measure, muscle on fire, Coming home each night, I would scarf down a handful of pain pills, then crawl into bed.”
He was dedicated to his career and patient care. However, he did not listen to his own exhaustion. When reading this part in the book, I sadly predicted that his cancer would return with vengeance and that he would die. Although there are many causes of cancer and many treatments, in the end one component that may facilitate surviving cancer is the patient supporting his own functional immune system
Why was this brilliant neurosurgeon, his colleagues, and his physicians, so disconnected from common sense? After trauma ,the body needs time to regenerate and recover. Having meaningful work and relationships is important; however, pushing yourself to exhaustion in pursuit of professional is a prescription for illness.
Whatever happened to the well documented knowledge that ongoing excessive stress without time to regenerate is a predictable risk factor for illness and even death? High stress is associated with poorer survival in patients with cancer. (Chida et al, 2008; Denaro et, 2014). How come the medical staff was unaware of the concept of “Karoshi” a Japanese word invented in 1978 which means death from overwork (International Labor Organization, 2013).
Possibly, this disconnect from common sense is embedded in medical training in which residents and interns work 24 hours or longer shifts. With the drive and pride to perform at any time, medical staff are trained to disregard the signals of their own body. One cannot burn the midnight oil indefinitely with incurring consequences. Do we really want our doctors, those to whom we entrust our very lives, living and working on the knife-edge of exhaustion?
Possible medicine need to encourage and support common sense such as a regular life style, exercise, healthy diet, and social support (see the book Fighting Cancer by Robert Gorter and Erik Peper, 2011). I hope that by reading Dr. Kalanithi’s remarkable book, it will encourage you to listen to yourself and nurture the self-healing potential of the body. Hopefully, the future medical prescription, instead of offering high technology and pharmaceutical solutions, will also respect and support the intrinsic self-healing processes of the body. Possibly the future prescription will read: have 8 hours sleep, take time to regenerate, learn relaxation skills, have regular meals, and nurture social connections.
Case Study: Karoshi: Death from overwork (2013). International Labour Organization. http://www.ilo.org/safework/info/publications/WCMS_211571/lang–en/index.htm
Chida, Y., Hamer, M., Wardle, J., & Steptoe, A. (2008). Do stress-related psychosocial factors contribute to cancer incidence and survival?. Nature clinical practice Oncology, 5(8), 466-475.
Gorter, R. & Peper, E. (2011). Fighting Cancer-A None Toxic Approach to Treatment. Berkeley: North Atlantic. ISBN: 978-1583942482
Kalanithi, P. (2016). When Breath Becomes Air. New York: Random House http://www.amazon.com/When-Breath-Becomes-Paul-Kalanithi/dp/081298840X/ref=sr_1_1?s=books&ie=UTF8&qid=1462475949&sr=1-1&keywords=when+breath+becomes+air