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Hospice Care Evolution

This personal account of the early days of hospice care provides a perspective on progress to date and lessons learned
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The concept of hospice came to the United States from England over thirty years ago as an NCI-funded demonstration project in New Haven Connecticut. In England, the modern hospice movement only began in 1967 with the opening of St, Christropher’s Hospice by Dr. (now Dame) Cicely Saunders in suburban London. Soon thereafter, hospice was considered to be a medical institution in which the physical, social, psychological and spiritual needs of dying persons were addressed in detail. Special emphasis was placed on pain management that was achieved through the use of Brompton Mixture, whose formulation included heroin, an opioid that could not be prescribed in the United States and cocaine, another restricted medication. If hospice were to be emulated in the United States, one would have to find some way to provide excellent pain relief without the utilization of heroin. Part 1 of this two-part series deals with the early development in the United States of approaches to manage the severe, chronic pain often present in persons with advanced, incurable illness.

Early Hospice in the United States

During the early 1970s, there were several approaches to managing this sort of pain:

  • Low dose opioids (morphine 10 mg) on a PRN q 4-6 hour schedule for recurrent pain.
  • Schlesinger’s (oral) solution consisting of low dose morphine, ethyl morphine and scopolamine. The mixture was developed at Johns Hopkins during the early 1900s. Ethyl morphine was more soluble in water than morphine, and hence crossed the blood-brain barrier more rapidly than morphine. Scopolamine is a ‘dissociative’ analgesic that was also used in the early part of the last century in obstetric analgesia in a combination known as “twilight sleep.”
  • Polypharmacy was a common approach. Typically each patient received:
    —sub-analgesic doses of meperidine on a PRN schedule
    —a phenothiazine tranquilizer
    —a barbiturate for nighttime sedation
    —a steroid to stimulate appetite and combat weight loss
    —an anti-depressant “because she must be depressed”
  • Pain was left untreated. All sorts of rationalizations supported this approach, ranging from pain as a way to atone for sins, pain as a necessary element of disease, and pain as evidence of moral weakness.

Several brief examples from my early experience will convey the sort of situations faced in the early days of hospice care (early 1970’s):

  1. A long-time family practitioner asked me to see a patient in a local hospital. During the referral call he referred to this woman as “the most difficult problem in my fifty years of practice.” After climbing stairs to the third floor of the hospital, I opened the fire door and could hear the patient crying out in pain. I stopped at the nurse’s station to check the chart and saw that I was the seventeenth doctor called in consultation. Each one had left a note recommending something different. I also saw that the lady was receiving a combination of drugs to treat each of her individual symptoms: pain (meperidine), anxiety (phenothiazine), depression (anti-depressant), insomnia (barbiturate), and anorexia (steroid). The lady was so sedated that she was incoherent. She was in considerable pain, moaning and crying out. She could not tolerate being touched.
  2. A doctor referred a hospitalized young man for hospice home care. Two of the nurses with whom I worked went to the hospital to gain some background information to prepare the patient for transfer to home. While they were there, the doctor appeared. The patient pleaded with his doctor to provide enough medicine to relieve his pain. The doctor looked down at the bedridden patient and said, “The reason you are having so much pain is that the devil is in your body.”
  3. A doctor referred a middle aged man with metastatic prostate cancer for hospice care after the man said to him, “Doctor…if you can’t keep me comfortable in the hospital, then why can’t I suffer at home?”
  4. A friend called me and asked how referrals were made to hospice. I explained the procedure and then asked for the name of the patient. He replied, “It’s me, Bill.” He had recently visited the two leading pain clinics in our part of the country where he was told, “You have intractable pain.” Both programs sent him home with large bottles of meperidine for injection. It was of little benefit to him. When I visited him at home that day he asked, “If you can’t relieve my pain, will you please get something to kill me.”

The above case examples were not at all unusual in those days. There were very few pain clinics in the entire country. Very little was being written about pain management. Few doctors were adequately trained to understand — much less treat — severe, chronic pain. Many doctors attempted pain control. When their efforts failed, it was not uncommon to hear the phrase “intractable (untreatable) pain” or the rationalization that the patient had developed “tolerance to normal doses” and “was becoming addicted.”

Inadequate Medical Education in Pain

Medical and other health professional school courses on pain were generally inadequate in the early days and may still be somewhat inadequate today. Clinical training passed inadequate practices, fears and prejudices from one generation to another. Doctors inherited, unquestioningly, the mistaken assumptions of their mentors. When dealing with patients in pain, doctors feared abetting the development of addicts, facing the possibility of overdose, or dealing with the probability of having to withdraw an addicted or dependent patient. Doctors further shied away from using narcotics because they had been warned of the high addiction rate among medical personnel.

My early experience with opioids was different. While studying pharmacology in medical school, I investigated the structure and functional relationships of the morphine group of drugs. During training in psychiatry I had the opportunity to observe withdrawal of addicts at the Federal Narcotics Hospital in Lexington, Kentucky. During my early years of practice I worked in drug abuse programs in San Francisco. I joined with Dr. Fred Myers of the Department of Pharmacology at the University of California, San Francisco, in doing research into the narcotic withdrawal process. We conducted a research program, for example, in the use of ganglionic blocking agents to modify the physiological response to opioid withdrawal. Later, as I became more involved in working with persons who were dying, I found that my experience with persons addicted to opioids was invaluable in my later work of pain management in persons with end-stage cancer.

Last updated on: April 28, 2016
First published on: March 1, 2005