At the End of Life, the Artist is Necessary

According to the Cambridge Dictionary, the word “clinical” may denote “expressing no emotion or feelings” or “showing no character and warmth.” The sentence that is given to illustrate its meaning is this: “We were going to paint our kitchen white, but we decided that would look too clinical.”

Do you ever wonder why hospitals and doctor’s offices are so drab? Why does there seem to be so little attention paid to aesthetics? What impact does this have on doctors, nurses, patients, and visitors?

One day, Cecily Saunders, the British pioneer of modern-day hospice care, was “magnetically drawn” to an oil painting in a gallery window. She was so taken by it that she parked her car and entered the gallery moments before they were closing on the last day of the exhibition. Cecily Saunders moved eagerly from painting to painting. The blue Crucifixion had been the piece to catch her eye from the window, but the piece she impulsively chose to purchase was of ‘Christ Calming the Waters.’

The following day, she wrote the following to the artist, Marian Bohusz-Szyszko:

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Achievement in Dying

Founder of modern palliative care, Cecily Saunders, was the 1981 Laureate of the Templeton Prize.

In her address, this section, in which she speaks about “achievement in dying”, especially struck me:

The first challenge was for the better understanding and control of pain. The seven years part time volunteer experience in St Luke’s and the later seven years full time developing this in St. Joseph’s laid the foundation for the increasingly sophisticated symptom control that means hospice today. There was much more to learn from St. Joseph’s from the strength and prayerfulness of the community of the Irish Sisters of Charity and, above all, from uncounted hours with the patients. It was they who showed me by their achievements how important the ending of life could be and many that I knew briefly and a few long stay patients, friends over the years, are the real founders of St. Christopher’s. One, another Pole, special among them all, left me other key phrases. When I told him he had not much further to go, he asked me, ‘Was it hard for you to tell me that?’ When I said that it had been, he said, ‘Thank you. It is hard to be told, but it is hard to tell too. Thank you’. We have to care what we say; this work is hard and demanding as well as rewarding. Two other things he said were separated by some three weeks. The first, ‘I do not want to die, I do not want to die’. The second, ‘I only want what is right’. Sometimes people ask me what I mean by achievement in dying. Here was one, Gethsemane made present today.

Later, in the same address she says:

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Caring for the Dying Without Props

Several years ago, I heard the story Bosco Gutierrez Cortina, a Mexican architect who was held hostage by kidnappers attempting to extort a ransom from his family. What struck me most about his story is how he devised a disciplined schedule for himself while is solitary confinement and he resolved to make good use of his time even while being held captive. Stripped of all of his ordinary resources, attachments, and supports, he was forced to discover what he actually had within inside himself. Without books, work, family, community, means of communication, and so much more, Bosco discovered what was a matter of his inner reserves versus what he had not yet deeply interiorized and made his own.

Sometimes I think about this and wonder just how well I know my faith, my family, and my friends. If I lost the ability to worship in community and to communicate with those I love, what would I have interiorly that would sustain me amid such deprival?

These thoughts also bring to mind an anecdote shared by Cicely Saunders, the founder of modern hospice and palliative care. In her biography, Shirley du Boulay writes, “When Cecily offered to read to David Tasma [the man who became the ‘founding patient’ of St. Christopher’s Hospice], thinking to comfort him, he said, ‘No — no reading. I only want what is in your mind and in your heart.’ She never forgot that simple reaction; and mind and heart became twin poles of St. Christopher’s philosophy.”

What do we have inside ourselves with which to comfort the dying? Without props, without activities, without prestige, who do we have to give when someone says, “I only want what is in your mind and in your heart”?

Most Want to Die at Home

Surveys consistently indicate that the majority of people would prefer to die at home instead of in a hospital. However, a minority actually do.

Cicely Saunders International just published You Matter Because You Are You, an action plan better palliative care, in which the charity explores the key challenges faced at the end of life.

The report notes that “Too many people with life-limiting illnesses – as well as those approaching death – spend long periods of time in hospital, in part due to a lack of social or community care. Meanwhile, hospital
admissions are rising to unsustainable levels across the country, something that was made all the more apparent as parts of the NHS risked being overwhelmed during the COVID-19 pandemic.”

Most people want to die at home and most hospital workers would be in favour of much greater home care.

Some of the main obstacles to this include: the weakness of social and familial ties, lack of “coordination and information sharing between health and social care providers”, and inadequate emphasis on professional palliative home care.

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A Death Chat Over Wine and Cheese

Years ago, one cold December night, I approached St. Christopher’s Hospice in South London. Through the window, I could see several people getting seated around a table. I went to the main entrance and informed the receptionist that I was here for the Death Chat, and she pointed me toward the room that I had seen through the window.

Those who were there greeted me warmly. A man named Anthony was speaking and it was the opposite of small talk. After a few others had arrived, Kostas, a principal social worker in Social Work, Bereavement, and Welfare, facilitated the introductions.

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