Remembering the pioneers

These days we have several days dedicated to one thing or the other. Tomorrow, October 12, 2019, is earmarked for something that concerns life and death, the comfortable, dignified transition from one to the other and life thereafter. The second Saturday of every October is World Hospice and Palliative Care Day.
Unless you catch a stray headline or a post brushes by while you wade through social media, you may miss the significance of October 12, 2019. Unless you suffer from a chronic illness or you care for someone who does, or you help both as a palliative care professional. In which case, it is a day that would probably mean the world to you.
This is the right occasion to remember two women who were strong enough to be compassionate. They were both discouraged from the medical profession when they started their education. Then the world plunged into war and they boldly went into the uncommon profession of compassionate care. They deliberately chose to sit next to and hold the hand of pain and misery. So that they could teach an uncaring world to understand and manage both, and death, better.
Meet Dame Cicely Saunders and Dr Elisabeth Kübler-Ross, the Pioneers of Compassionate Care.

Dame Cicely Saunders
Founder of the discipline where science combines with compassion to deliver care

Cicely Saunders founded the first modern hospice (home for the care of the dying) and, more than anybody else, was responsible for establishing the discipline and the culture of palliative care. She introduced effective pain management and insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments.
Saunders introduced the idea of “total pain,” which included the physical, emotional, social, and spiritual dimensions of distress. A good listener, she paid systematic attention to patient narratives.

School and the war

Born in 1918, Cicely Mary Strode Saunders went to school when she was 10. Taller than the other girls, she felt she never fitted in, which, she said, gave her a feeling for people who were outsiders. She also suffered from a painful and slightly crooked spine, and was made to lie flat on the floor for 40 minutes a day.
Her father disapproved of her desire to be a nurse, and so instead she went to study at Oxford. After the outbreak of the second world war she abandoned her course and defied her parents' advice, enrolling as a student nurse at St Thomas' Hospital in 1944.
However, her back was still painful, and she was advised to quit nursing. After returning to Oxford for a year she gained a “war degree” and qualified as a social worker, or what was then called a lady almoner, in 1947.

Social worker to doctor and researcher

​After the death of her father and  some close friends, she fell into a state of “pathological grief”. She felt that, at last, she knew what God had called her to do, which was to build a home for dying people, where scientific knowledge should be combined with care and love.
Saunders was advised by a surgeon that people wouldn't listen to her as a nurse, that doctors desert the dying, and that she could best help dying patients by becoming a doctor. At the age of 33, she was accepted as a medical student at St Thomas' Hospital.
After qualifying, she obtained a research scholarship at St Mary's Hospital, where she studied pain management in the incurably ill, and at the same time worked at St Joseph's, a hospice for the dying poor, run by nuns. 

First modern hospice takes shape

By late 1959, she had drawn up a 10-page proposal for a hospice. Building work started in 1965. The hospice contained 54 inpatient beds. The first patient was admitted in 1967.
During her 34 years as Medical Director, Chairman and Founder/President of St Christopher’s Hospice, Saunders was also a trustee of a number of grant-giving trusts.
She believed that more research was needed to support this growing speciality of palliative care. “We need one really serious research foundation to set standards for the world. Also, the hospice movement has largely concentrated on cancer; we need to look at other things, at what we can do for people with strokes and motor neuron disease. We need to go on learning so that in 10 years’ time we are doing things better than we are now.” 

St.Christopher's Hospice (2014). Inset: under construction. Source: https://www.stchristophers.org.uk/

Untiring work and recognition

In 2002, in her early 80s, she became the Founder Trustee and President of The Cicely Saunders Foundation (now Cicely Saunders International). The Cicely Saunders Institute opened in London in 2010. It is the first institution in the world where researchers, practitioners, teachers and caregivers are brought together under one roof, creating a complete multi-professional environment.
In 1987, her work contributed to the decision by The Royal College of Physicians to recognise palliative care as a new medical speciality. She held over 20 honorary degrees from the UK and overseas, and earned several awards.
She was made a Dame of the Order of St Gregory the Great by His Holiness The Pope. Dame Cicely was made a Dame of the British Empire in 1980 and was awarded the Order of Merit by Her Majesty the Queen in 1989.
Dame Cicely Saunders developed breast cancer but continued to work, even from her deathbed. She died at St Christopher’s on July 14, 2005.

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Sources: BMJ 2005;331:238. Cicely Saunders International

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Telling the cancer patient

Cicely Saunders with a patient. Image: http://www.stchristophers.org.uk/

​I am sure that we cannot make rules but that we must try and deal with each person individually. Our patients do not know the nature of the hospital when they come, and many do not ask a leading question at any time. As we almost always leave them to take the initiative, questions of their diagnosis and prognosis are not discussed. Our impression is that many of these people do realise at the end that they are dying and are able to accept the fact peacefully and quietly. Some like to talk of it, but others do not. Some, on the other hand, appear to keep their hope of recovery to the end.
There are many, however, who do ask questions. A very few ask directly if they have cancer, for I think that by this time the actual diagnosis has less significance for them. Some wait until they know us well: a surprisingly large number ask on their first interview.
I find that if my first answer is a rather guarded one, then the patient almost always goes on to give me a lead if he has a genuine desire for knowledge and shows me something of his real worries and fears and also of his ability to face up to a more direct and honest answer. Most of those who ask really want to know; very few indeed are unable to face the answer.
The final truth may  only come out in a series of talks. I have seen many whose real fear was not of cancer, nor of death, but of chronic illness, of pain, or of the uncertainty that of comes of deception. If, without taking away all hope of recovery, one is yet able to bring the idea of death forward as a strong possibility, some of the patient’s real fears can be brought into the open and we can help him to deal with them. Many have expressed their gratitude for the truth at last, almost all say that they are not afraid, many accept spiritual help, some beginning to understand it apparently for the first time in their lives. Almost all grow in patience and courage until they die.
Relatives often ask that a patient should not be told, but they accept our assurance that while information will never be forced on patients, it will be given if they really ask, and that, when they do realise the truth, we will be able to help. I would like to assert most strongly that much good can come in some cases of the patient’s knowing the truth, if at all  times those telling it to him are trying to “speak the truth in love.” 

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Letter to BMJ Sep 26, 1959. Br Med J 1959;2:58

Dr Elisabeth Kübler-Ross
Learning of death from the dying

Elisabeth Kübler was one of the triplet girls born in Zurich, Switzerland, on July 8, 1926. Though she weighed only two pounds at birth, she credited her survival to her mother's attention and love.
At age 5, when she was hospitalized with pneumonia, Elisabeth witnessed the peaceful death of her roommate—her first experience with death. On another occasion, she watched a neighbour calmly reassuring his family as he prepared for death from a broken neck. Such experiences led her to believe that death is but one of many life stages and that the dying and those around them should be prepared to face it with peace and dignity.
Developing an interest in medicine at a young age, Elisabeth encountered intense resistance from her father about her career aspirations. He told her that she could be a secretary in his business or go become a maid.
When Elisabeth was 13, the German army's invasion of Poland marked the beginning of World War II. She volunteered to help the Polish war victims. She first worked as a laboratory assistant in a hospital for war refugees, and then in 1945, became an enthusiastic activist with the International Voluntary Service for Peace.

Helping rebuild communities

While still a teenager, she worked in France, Poland, and Italy, rebuilding communities devastated by the war. Just after the liberation of Europe in 1945, she visited Majdanek, a concentration camp, where she met a girl who had been left behind when the gas chambers would not hold another person. Rather than remain bitter, Elisabeth recalled, this girl had chosen to forgive and forget. The girl said, "If I can change one person's life from hatred and revenge to love and compassion, then I deserved to survive." There were images of hundreds of butterflies carved into some of the walls at the camp. The butterflies—these final works of art by those facing death—stayed with her for years and influenced her thinking about the end of life. She decided to spend her life healing others.
Elisabeth began pursuing her dreams to become a doctor in 1951 as a medical student at the University of Zurich. A year after she graduated, she married and moved to the US. After an internship at the Community Hospital in Glen Cove, Long Island, she went on to specialize in psychiatry, becoming a resident at Manhattan State Hospital.

Identifying the five stages of grief

In 1962, she moved to Denver, Colorado, to teach at the University of Colorado Medical School. She had been disturbed by the treatment of the dying throughout her time in the United States and found nothing in the medical school curriculum at the time that addressed death and dying. Filling in for a colleague one time, Elisabeth Kübler-Ross brought in a 16-year-old girl who was dying from leukaemia into the classroom. She told the students to ask the girl any question they wanted. But after receiving numerous questions about her condition, the girl erupted in anger and started asking the questions that mattered to her as a person, such as what it was like to not be able to dream about growing up or going to the prom.
Moving to Chicago in 1965, Kübler-Ross became an instructor at the University of Chicago’s medical school. A small project about death with a group of theology students evolved into a series of well-attended seminars featuring candid interviews with people who were dying. Building upon her interviews and research, Kübler-Ross wrote On Death and Dying (1969), which identified the five stages that most terminally ill patients experience: denial, anger, bargaining, depression, and acceptance. The identification of these stages was a revolutionary concept at the time, but has since become widely accepted.
Life magazine ran an article on Kübler-Ross in November 1969, bringing public awareness to her work outside of the medical community. The response was enormous and influenced Kübler-Ross’s decision to focus on her career on working with the terminally ill and their families. She stopped teaching at the university to work privately on what she called the “greatest mystery in science”—death.

Teaching transition to the world

During her career, Kübler-Ross wrote more than 20 books on death and related subjects. She also travelled around the world, giving her “Life, Death, and Transition” workshops. Funded by the profits from her books, workshops, and talks, she established Shanti Nilaya, an educational retreat, in Escondido, California, in 1977. Around that same time, she formed the Elisabeth Kübler-Ross Center, which was later moved to her Virginia farm in the mid-1980s. Working with AIDS patients during the early days of the epidemic, she tried to create a hospice for AIDS-afflicted children, but dropped the plan after encountering much opposition.
For one who wrote so extensively on dying and death, Kübler-Ross’s transition from this life was not a smooth one. She retired to Arizona after series of strokes in 1995 left her partially paralyzed and in a wheelchair. “I am like a plane that has left the gate and not taken off,” she said, according to an article in the Los Angeles Times. “I would rather go back to the gate or fly away.”
She died on August 24, 2004, of natural causes, surrounded by friends and family. In 2007, she was inducted into the National Women’s Hall of Fame for her work. 

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Sources: https://www.biography.com/scientist/elisabeth-kubler-ross; https://cfmedicine.nlm.nih.gov/ physicians/biography_189.html

Shunning the dying

Shortly after I was accepted by [the hospital], where I was put in charge of the psychopharmacological clinic and also did liaison consulting for other departments, including neurology, I was asked by a neurologist to check on one of his patients. I spoke with the patient, a man in his twenties, who was supposedly suffering from psychosomatic paralysis and depression, and determined instead that he was in the later stages of ALS, or amyotrophic lateral sclerosis, an incurable degenerative disorder.
“The patient is preparing himself to die,” I reported.
The neurologist not only disagreed; he ridiculed my diagnosis and argued that the patient just needed some tranquilizers to cure his morbid state of mind.
Yet days later the patient died.
My honesty was contrary to the way medicine was typically practiced in hospitals. But after a few months on the job I noticed that many doctors routinely avoided the mention of anything to do with death. Dying patients were treated as badly as my psychiatric patients at the state hospital. They were shunned and abused. Nobody was honest with them. A cancer patient might ask, “Am I dying?” and the doctor would reply, “Oh, don’t be silly.”  That was not me.
But then I do not think many hospitals had seen many doctors like me. Few had experience like my relief work in the war-torn villages of Europe, and even fewer were mothers, as I was. Plus my work with schizophrenic patients had showed me there was a curative power beyond drugs, beyond science, and that is what I brought each day to the hospital wards.
During my consultations, I sat on beds, held hands and talked for hours. There was, I learned, not a single dying human being who did not yearn for love, touch or communication. Dying patients did not want a safe distance from their doctors. They craved honesty. Even the most suicidally depressed patients could often, though not always, be convinced there was still meaning left in their lives. “Tell me what you’re going through,” I would say. “It will help me to help other people.”
But, tragically, the worst cases—those people in the last stages of illness, those who were in the process of dying—were given the worst treatment. They were put in the rooms farthest from the nursing stations. They were forced to lie under bright lights they could not shut off. They were denied visitors, except during prescribed hours. They were left alone to die, as if death might be contagious.
I refused to go along with such practices. They seemed wrong to me. So I stayed with my dying patients for however long it took, and I told them I would.
Although I worked all over the hospital, I gravitated toward those cases considered the worst: dying patients. They were the best teachers I ever had. I observed them struggling to accept fate. I listened to them lash out at God. I shrugged helplessly when they cried out, “Why me?”  I heard them make peace with Him. I noticed that if there was another human being who cared, they would arrive at a point of acceptance. These were what I would eventually describe as the different stages of dying, though they apply to the way we deal with any type of loss.
By listening, I came to know that all dying patients know they are dying. It’s not a question of “Do we tell him?” or “Does he know?”
The only question to ask is: “Can I hear him?”

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​Adapted from the book The Wheel of Life: A Memoir of Living and Dying by Dr Elisabeth Kübler-Ross. 
​Copyright 1997 by Dr. Elisabeth Kübler-Ross. Publisher: Bantam Press

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ALREADY PUBLISHED IN THIS SERIES

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A florist dying of cancer and confined to bed is relieved that compassionate care will not only ease his suffering but also look after his family after his passing

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A palliative care physician who was once an atheist and critical care specialist answers

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A son is happy he got to spend some time with his mother when she was still conscious, thanks to the palliative care doctor's advice to come home sooner

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A palliative care social worker helps two patients and their families cope with dementia

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A mother who lost her 4-year old daughter to brain cancer writes how hope sustains life right through prolonged care

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How a living will can help ensure the inevitable death happens as you want it, peacefully and with dignity