In an Op-Ed article in the NY Times, Ira Byock, MD, correctly details how brutal dying from a terminal disease is in this country. He cites the tragic case of a friend who fails to respond to conventional therapy for oncologic disease at a well-known Center of Excellence and the suffering he is going through. With conventional therapy failing he is offered a chance to enter a clinical trial or experiment to save his life. The author recommends Hospice care instead but if the patient chooses Hospice care he will be forced to forsake entering the clinical trial and turn his care over to the Hospice team. The author believes this is wrong and the patient should be able to receive comfort care and palliative care while still treating his disease. He goes on to make a list of sane recommendations regarding the future training of doctors and nurses so that patients and their loved ones will have the opportunity to be better informed about end of life issues.
I became exposed to Hospice in the late 1970’s early 1980’s when the Hospice movement consisted of caring angels of mercy , who at no cost to the patient or family provided comfort measures to the patient and support and counseling to the family. Hospice of Boca Raton met in a store front on Spanish River Boulevard off Federal Highway. It was staffed by volunteers from local churches, off duty paramedics, nurses, and community volunteers. They needed a medical director so I was asked to participate as part of a rotating group of physicians who donated our time to this worthy cause. Volunteers took a training course and devoted countless hours to providing bedside care and comfort to the sick and dying.
As one of the volunteer medical directors I attended care team meetings, reviewed care plans and signed for the prescription medications and narcotics needed to care for our patients. My time commitment was very structured and limited compared to the long hours the volunteer staff invested in providing comfort measures. We were paid nothing, expected nothing and worked with the patient, their loved ones and their doctors tailoring a care plan that fit each individual’s needs. We did not make them stop their treatments. We did not make them transfer their care to Hospice and away from their long time care team. In those days patients actually had a personal physician who knew them for years.
We were thanked and loved for our limited time investment far in excess to our contribution especially compared to those wonderful volunteers who performed the daily bedside and household care. This all changed when insurance and Medicare agreed to finance Hospice. At first we all thought the extra funding would now make it possible to provide service to many more individuals and pay for badly needed supplies and medications.
The first thing that happened is that many of the volunteers were dismissed and replaced with full time help. That included the volunteer physician medical directors. Medicare wanted full time people. Hospice became a business run by profit making corporations, hiring per diem help to go into homes instead of full time well trained Hospice staff. To be a patient in Hospice you were asked to relinquish your current doctor and medical care and transfer your care completely to the paid full time Hospice teams. In many cases patients were taken off their routine medications and over-medicated with narcotics producing a legal “Kevorkian-like” result even if the conditions did not dictate this approach. It became a big business, not a center for comfort and caring.
Dr. Byock’s article in the NY Times should be required reading for all families and persons over age 50. His suggestions should be discussed in our places of worship, places of education and especially in our medical school and nursing school curriculums. Dying from a painful incurable disease in America should not be this hard and brutal.
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