Palliative Care

Being useful vs. useful being

Today I was having a conversation with someone who has visited persons who are elderly and receiving palliative care. I asked him if any of them have expressed temptations to end their lives prematurely.

“Many,” he said.

“Why is that?” I asked.

He told me that it’s because of a sense of no longer being useful. “For so many, their sense of worth is connected to how useful they can be to their loved ones and to others in their life. When these opportunities diminish, so does their estimation of the value of their lives.”

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“What do I need to know about you as a person?”

I was recently learned about Dr. Harvey Chochinov who is an inspiring Canadian doing pioneering work in palliative care.

It is truly exciting to discover these forerunners who have worked so actively and lived so generously, giving an example to new generations about the kind of humanizing care that is possible.

Dr. Chochinov is a Distinguished Professor of Psychiatry at the University of Manitoba and Director of the Manitoba Palliative Care Research Unit, CancerCare Manitoba. He has been doing palliative care research since 1990 and has explored psychiatric dimensions of palliative medicine, such as depression, desire for death, will to live and dignity at the end of life. He has also pioneered “dignity therapy.”

According to this paper of his, “Dignity Therapy, a novel, brief psychotherapy, provides patients with life threatening and life limiting illnesses an opportunity to speak about things that matter most to them. These recorded conversations form the basis of a generativity document, which patients can bequeath to individuals of their choosing. Client Centred Care is a supportive psychotherapeutic approach, in which research nurse/therapists guide patients through discussions focusing on here and now issues.”

In this brief YouTube clip, Dr. Chochinov describes what he calls “The Patient Dignity Question” and the significant impact that this open-ended, personalist question can have for patients and those who care for them:

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“Call me ‘Doctor'”

The other day I heard a story about a women in her nineties who was receiving palliative care.

This woman, it was told, “had never before insisted on ceremony.”

She was not the kind of person who would have had her academic credentials in her Twitter handle.

She did not ordinarily expect anyone to use her professional titles.

However, for the first time in her life, when she was receiving care much later in life, she asked to be called “Doctor.”

She was a not a medical doctor, but she had earned a doctorate in some other subject.

And the reason why she wanted to be called “Doctor” only now was because she intuited that it would make a difference for how she would be treated and the kind of care she would receive.

This is a common and striking phenomenon and reminds me of this story about Dr. Harvey Chochinov:

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Musical aid in suffering

The other day I met a woman who is a classical singer and musical therapist. Over lunch she told me about how she works with some stroke patients who cannot speak, yet who can sing.

The photo accompanying this post is from this article explaining how this works.

Take a look at this quick clip showing showing an example of neurologic music therapy:

This classical singer has also worked with orphans, palliative care patients, and others in vulnerable states.

Another musician at the lunch explained to us that the more complexity there is to the music, the more order the music can put into your soul. This led me to think: Instead of medical aid in dying, we need musical aid in suffering.

Women at the foot of the cross

I recall reading in a biography of Cecily Saunders, the founder of the modern hospice and palliative care movement, that she had been struck by how many women were pioneering and influential in the care of the dying throughout the centuries.

This is something that I contemplate whenever I look at religious art depicting the women at the scene of the Crucifixion.

In his letter on the dignity and vocation of women, John Paul II wrote:

Indeed, the Gospels not only describe what that woman did at Bethany in the house of Simon the Leper; they also highlight the fact that women were in the forefront at the foot of the Cross, at the decisive moment in Jesus of Nazareth’s whole messianic mission. John was the only Apostle who remained faithful, but there were many faithful women. Not only the Mother of Christ and “his mother’s sister, Mary the wife of Clopas and Mary Magdalene” (Jn 19:25) were present, but “there were also many women there, looking on from afar, who had followed Jesus from Galilee, ministering to him” (Mt 27: 55). As we see, in this most arduous test of faith and fidelity the women proved stronger than the Apostles. In this moment of danger, those who love much succeed in overcoming their fear. Before this there were the women on the Via Dolorosa, “who bewailed and lamented him” (Lk 23:27). Earlier still, there was Pilate’s wife, who had warned her husband: “Have nothing to do with that righteous man, for I have suffered much over him today in a dream” (Mt 27:19).

It is interesting to consider the impact that art can have on the imagination and also on forming a person’s sensitivity to his or her role to play within a society.

Hair, makeup, and palliative care

I was interested to come across several news stories about a new documentary created by filmmaker Lorraine Price. The film tells the story of an 83-year-old woman named Kathleen Mahony who, as Price tells us, “volunteered to do hair and makeup for the terminally ill at the palliative care unit at Notre-Dame Hospital in Montreal [for the past 31 years].”

Price was inspired to make the documentary in honour of her grandmother who had been a very classy and elegant woman. In this interview, Price reflects:

Her style was loud and unapologetic. But when my grandmother passed away in hospice care, on top of having dementia, she was barely recognizable to me—her hair was short and white, her nails nude, and her lips pale. It felt as though she was gone long before she left us. I was so absorbed by my grief and the desire to mitigate her suffering that I neglected to consider the importance of that outward-facing identity that she had cultivated her whole life.

I would love to see this documentary because we desperately need good examples of how to treat those who are approaching the end of life.

There is a universal, inherent dignity that is innate, yes. But there is also the matter of dignifying – we can add to a person’s dignity by bestowing honour, appreciation, and affection.

In another interview, Price remarked, “Kathleen doesn’t do their hair because these patients are dying. She does it because they are human and they deserve to feel dignified and like themselves even when they are at their most vulnerable.”

Kathleen’s service is precisely the kind of hidden work that will benefit our culture greatly by being brought into the light.



“All My Friends Are Dead.”

Never underestimate how much it can delight an author to hear from an appreciative reader.

On this date five years ago, I had the opportunity to meet the author of a book I really enjoyed.

It was the day after I had attended the 2016 Templeton Prize Ceremony honouring Rabbi Lord Jonathan Sacks when I set off to Oxford to meet the author of a biography of another Templeton Prize winner, Cecily Saunders.

Saunders’ biographer Shirley du Boulay was in her early 80s. She had received my handwritten letter of approximately eight pages praising her for her beautiful biography of the founder of the modern hospice and palliative care movement in the U.K. and eventually sent me an email in reply.

Naturally, I was thrilled when she invited me to her Oxford home for tea should I ever be passing through.

I took a cab from the Oxford bus station to her address and arrived just before 1 o’clock.

I rang the bell and, a moment later, she answered.

As I followed her inside, she hurriedly began to prepare a light lunch even though I’d insisted on only coming for tea.

The table was set in a lovely manner and there was a bottle of rosé, meats, potato salad, green salad, bread, and butter.

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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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Meet the People Granting Wishes to the Dying

One of this blog’s readers, Lisa Wright, reached out to me to share about the organization she co-founded called the Living Wish Foundation.

Lisa, who is an Registered Nurse specializing in palliative care, and her co-founders established the Foundation with the mission “to provide medically supervised and supported end of life wishes to patients in the region who are facing a terminal diagnosis.” They do this by granting wishes that enable patients to reframe hope so to enhance their quality of life until their death.

I was fascinated by this initiative, and delighted to interview Lisa by phone to learn more.

In particular, I wanted to hear from her about how granting wishes serves to “reframe hope.”

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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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