Hospice Care on a Personal Level in My Family

he original purpose of hospice was to provide aid and comfort to ill travelers on their religious retreat to the Holy Land. It was intended for strangers and anyone who came to the door of the monastery or other place would be welcomed with no questions asked and no payment expected. It was altruism in its truest form, but all that has changed now.

First begun in modern times in Great Britain, the idea of hospice for the terminally ill, didn’t spread quickly to the United States. It wasn’t until 1967 that Dame Cicely Saunders opened the first hospice at St. Christopher’s Hospice in the UK. Her belief was that terminally ill patients deserved both pain-relieving medicines and palliative care in their final days and months of life.

Slowly, the concept of using strong opiates to relieve cancer pain became acceptable and Brompton’s Mixture was created for that purpose. An article in The Southern Medical Journal provides some of its benefits: …in patients who can tolerate oral medication, the present formulation can be used in lieu of parenteral narcotics, often with superior results and always with cost effectiveness. With Brompton’s Mixture, side effects of parenteral narcotics such as sedation, lethargy, and nausea are avoided.

The original formula contained heroin, a highly effective means of relieving chronic cancer pain. But because of its stigma in the US relative to drug addiction, any preparation created here would not include heroin, but would contain cocaine and other ingredients instead.

In was in the late 1970s when I first became aware of the hospice movement in its infancy in New York City through a book review I was writing. Fortunately, the book contained a references section with all the hospitals that were involved in hospice care.

My mother had recently been diagnosed with metastatic colon cancer and was in incredible pain after having been misdiagnosed as having sciatica for the previous five years by her family physician. He was adamantly against any strong opiates for her pain and prescribed an ineffective medication. The reason? He had worked in an addictions unit at a hospital, and that soured him to any consideration of potentially addictive medications.

The time had come to seek other help for my mother and we contacted one of the references in that book to engage a caring and knowledgeable oncologist in NYC. To say he was empathic doesn’t do him justice. He came to my mother’s hospital bed and fed her after she had a surgery to reduce her pain.

Afterward, the hospice unit went into full hospice mode and assigned a nurse practitioner, a social worker and a medical assistant. She would be cared for in her home with a care worker during the day with each of us taking turns over night. A medical chart noted meds and time of delivery, and who was assigned a night for a “shift.” One of my sisters set it all out for us on my mother’s bedroom dresser.

Obtaining her Brompton’s Mixture was another obstacle we had to conquer. A co-worker, whose husband had died of cancer, provided the name of a pharmacy where they would make the mixture. It was the only pharmacy I contacted that would compound it; robbery was on every pharmacist’s mind when they heard cocaine.

Shortly after obtaining two pints of the mixture and informing the hospital, they agreed I could pick it up at their hospital pharmacy — they would provide it for one-third the cost. Thus began what I called my “drug run.” I had to drive through areas known to be drug havens and hope no one would know what sat on the seat beside me in my car.

My mother would leave us before one pint of the mixture had been consumed. Lapsing into a coma, she spent her last hours in a special room directly outside the nurse’s station in the hospital. All of us sat with her in the hospital through the night and we were there when they pronounced an end to her suffering. It was wrenching, but we were extremely thankful for hospice.

Today, a decided turn has been noted in how hospice is administered and it is far afield from Dame Saunders’ management or that of the religious travelers. Money has a tight grip on a highly profitable field and their methods are nothing less than shocking.

I would encourage all of you to read ProPublica’s article on this new medical hustle where the aim is profit at all costs. Patient suffering appears to receive little notice in these newest corporate industries of medicine.