Death be not proud, Part II

Some lessons learned and ideas on how to get through a loved one's end of life

    On April 28, the first part of this two-part article appeared in the News.
     These articles are based on a symposium presented at Swedish Medical Center titled, Grief, Cancer and End-Of-Life,  and sponsored by the Hospice Foundation. The hospice philosophy is grounded on these principles:
affirmation of life; self determination of patients and their families in their participation in their care; education to help patients and families choose their care; understanding and acceptance that life's journey inevitably leads to death; palliative care to help provide people peace and dignity as they lay dying.
(Palliative care is a branch of medicine focusing on providing quality of life as a person faces end-of-life. In addition to effective pain management it may include alternative therapies such as meditation, massage, visualization and imaging; music and aroma therapies, expressive therapies, reminiscences, life review and spiritual counseling.)
     In the first of this two part series, I talked about the origins and philosophy of hospice, how timely referrals to hospice gives patients and families resources to the many options for optimizing quality of life at the end of life, and of the challenges faced by health-care professionals working with people and their families at the end of a life.
     Because most of us, physicians as well as other health-care professionals, don't want to consider our own mortality, we don't talk about death or plan for it.
Even when our mortality confronts us with a diagnosis of 'terminal illness,' there is denial, anger and isolation, bargaining, depression, and maybe acceptance (as described in Kubler-Ross' 5 Stages of Dying, in her treatise, "On Death and Dying").  
     As I listened to the panelists speak, I thought of these experiences from my own life. In the mid 1980s a dear friend suffered and died from cancer after a 10-year remission. Originally diagnosed and treated by a prominent Seattle oncologist, she did her own research and decided to refuse chemotherapy. The oncologist became angry and refused to treat her any longer.
Also in the 1980s, I helped care for a young woman diagnosed with a rare, aggressive cancer of the throat and esophagus. There was no chance of a cure but none of her physicians talked to her or her family about hospice and palliative care. Upon one of her admissions to the hospital, due to continued loss of weight, her primary physician ordered the passage of a naso-gastric to administer nutrition. I told the physician that she could not tolerate the procedure and nutrition was administered parenterally. She was re-admitted a few weeks later and she, her husband and I talked for a long time. I asked them both if they had thought about the possibility that she might not be cured and what they might want her end of life to be like. This was the last time I saw her. She died a few days later.
My mother's colorectal cancer was misdiagnosed and had metastasized to her liver. She lived with me, my husband and two children here in Seattle prior to, and after surgery to prevent intestinal obstruction and rupture, and during her chemotherapy treatments. She died in Phoenix, Ariz. surrounded by extended family, me, and her four sisters. Her hospice physician ordered morphine to relieve pain, but I was the one to administer the morphine. My mother went into a coma and died a week later. I felt guilty for years afterward.
By the late 1980s, I left nursing. In all of those years of caring for people who were acutely ill or dying, I never learned how to deal effectively with stress, loss, grief, pain and sadness.
I read an article in "The New York Times" about a physician first diagnosed with cancer in 1998 at age 31. She opted for the most aggressive forms of treatment: a mastectomy, months of grueling chemotherapy, a stem-cell transplant and by her own wishes, the other breast removed as a preventive step. Per her request, the physicians discussed her disease and treatments with her husband. She refused palliative care" "That's for people who are dying." Her cancer returned in 2008 and again she chose the most aggressive forms of standard treatment ,and when those were exhausted she turned to non-traditional therapies, which cost her and her husband thousands of dollars with little hope of cure or comfort.
It was only in the last days before she died that she agreed to have her care managed by a palliative care physician, primarily to relieve her pain. Postscript: after her first bout with cancer at age 31 in 1998, this physician decided to specialize in palliative care.
    I came away from the symposium with these reminders:
Listen carefully to your patients, respect and honor their wishes and accept their choices.
People are wonderful and courageous, and their intelligence, strength of will and spirit are too often under-estimated.
Accompany your patients and their loved ones during that end of life journey offering non-judgmental support, guidance, education, and available options in order to reach realistic goals at different stages of the journey.
As a family member, don't be afraid to take on the role of advocate and don't feel guilty about providing pain relief.
Learn how to cope with stress and deal with your own grieving process.
Be alert and responsive to a patient's feeling of abandonment at end-of-life; even Christ, in his last moments, felt abandoned by God.
All that any of us can wish for is to die in peace and dignity.
.... "and therefore never send to know for whom the bells tolls; it tolls for thee", (John Donne).[[In-content Ad]]