“Hospices are not places where people are handed over to die – they are full of love”

Rachel Clarke is a palliative care doctor at Katharine House Hospice in Oxfordshire.

When patients are admitted, many are afraid of death.

But Rachel and her colleagues are determined to help them live life fully before they die.

In a second moving extract from her book Dear Life: A Doctor’s Story of Love and Loss, she remembers some of the patients and their stories that will remain with her forever …

Dorothy

Dorothy was admitted to the hospice one Monday.

“It doesn’t make sense to spend time with me,” he said on arrival. “I will be dead on Thursday.”

“What makes you think so?” I asked curiously.

Rachel Clarke is a palliative care doctor who breastfeeds her father through cancer
Rachel Clarke is a palliative care doctor who breastfeeds her father through cancer

He gave me the kind of persistent gaze that a teacher reserves for the donkey in the classroom, then explained to me: “Mr. Edwards. The senior consultant in the surgical department told me that my bowels had stopped working and I was going to die in six days. That was Friday. I have three days left. “

I knew the basics of Dorothy’s story. Admitted to the emergency room with acute intestinal obstruction. Given his age – 96 years – an almost certainly terminal diagnosis. But at no time was there talk of Thursday.

“I admit I don’t feel full of death,” said Dorothy. “I feel full of life. But if you don’t mind, I’d rather be left alone. I have little time left and would like to read my newspaper. “

Rarely in my career had I been fired beautifully. I dared not answer.

“Based on my medical evaluation, I’m not sure you’re going to die on Thursday,” I said to Dorothy. “If I had more time, is there a way you would like to spend it?”

The work of the hospices is invaluable

“If I hadn’t died Thursday, then I would definitely play bridge with my local group, as I have done every Thursday for the past two decades. But I can assure you that I will die instead. “

“How about this,” I proposed. “Are we planning a bridge unless death occurs?”

“Miss, I’ll humor you if it makes you feel useful.”

A good day, for me, in the hospital, is one in which I feel that we have helped someone to die with intact comfort and dignity.

But infinitely preferable are the days when we helped a dying patient to live – whether basking in a bath full of bubble bath at crazy prices, stroking the Labrador family, saying a hasty but no less important “I do” from a chair on wheels decorated with flowers in the hospice chapel, or watching golden finches shine among the trees outside.

In a ward where every patient has a terminal diagnosis, life, in all its beauty, continues.

Thursday morning the nurses took care of washing, embellishing, plumping and preening. When Dorothy finally emerged, dressed for her trip on the bridge, it could have been Boudica.

Desperately thin, his cart is a wheelchair, a preventive dose of morphine in his veins, yet seated sitting straight upright with a crocodile bag perched on his lap and an impeccably coordinated green tweed skirt, cashmere cardigan and tennis shoes.

Fervent with all the stories and attention, Dorothy was, for Thursday only, the queen of our ward – and she knew it. For a moment, our eyes met and she nodded imperceptibly.

The next morning, when I got to her bedside to hear all about her journey, Dorothy complained of her poor shape. “I simply
it wasn’t as sharp as usual, “he complained.

I raised an eyebrow. “To be honest, Dorothy, no one else at the table had the excuse that they were dying,” I observed. “Does anyone else seem to care?”

A mischievous grin, a twinkle in the eyes and then, finally, I was freed from the donkey’s corner with the words: “Doctor Clarke, it was magnificent”.

A few days later, Dorothy died. Mr. Edwards, it turned out, was only 48 hours wrong, but his patient lived at the time.

Katharine House Hospice is located in Banbury
Katharine House Hospice is located in Banbury

Simon

Simon, an ex-policeman in his sixties, had retired a few months earlier. Shortly thereafter, he noticed a knot in the neck, painless, harmless and perhaps, he had speculated, linked to a recent cold in the head.

The lump continued to grow. Even more curious than worried – he regularly ran 10 miles before breakfast – he visited his family doctor.

The speed of his hospitalization impressed him, innocent of the fact that he was on a two-week cancer route. The scan became a biopsy, the biopsy a consultant, murmuring cryptically about inoperability, while Simon was sitting, stuck in the seat, feeling nothing of substance after the “cancer”.

I heard it before staring at it. In particular, I heard the sound of air being sucked into his lungs through an airway severely compressed by a tumor.

Simon was seated upright, his eyes flickering, his shirt torn and both hands holding the bed as if his life depended on it.

Beside him was a woman in her thirties, upset and disheveled, who said: “It’s all right, Dad. Look. Look, the doctor is here. Now everything will be fine.”

Simon stared at me, swallowing the air. He could not support this breathing work. If, as I suspected, panic had exacerbated his airway obstruction, then I knew how to help.

The nurses brought in the large dose of steroids which, I hoped, would begin to reduce the swelling of Simon’s neck. Next, a tiny dose of fast-acting sedative, just enough to release panic.

I saw his daughter Sophie cry. He began to describe life alone with cancer, having been widowed a few years earlier. “It was all so fast. Too much to accommodate. Sophie, if I’m honest, is my rock, but she also has Timmy, her boyfriend, to deal with.”

“Don’t be ridiculous, Dad,” Sophie said, almost angrily. “You know that taking care of you is not a problem. We all love being with you, especially Timmy. “

I have addressed the topic of the future. “Look, I’m not stupid,” he exclaimed. “I don’t have one, do I? This is it. I know what’s going on.”

There are times in medicine where what you say next feels pregnant with risk like a surgeon’s first incision. The right words, used wisely, can fill the most airy expanse between you and your patient but, if misjudged, it can bring down confidence.

“Simon, are you the type of person who likes to discuss everything frankly,” I started, “or do you prefer to take things one day at a time, without speculating about the future?”

“I already know I’m dying,” he replied. “What more could you tell me?”

“One of the things I’ve noticed working here, Simon, is the frequency with which patients can’t ask what they care about most, which is what it will be like when they die – and I wonder if this is something you would like to talk about. ? “

I have seen the horror distort Sophie’s face, as if I had transgressed somewhere no doctor should walk; but his father, if nothing else, seemed relieved.

“Go on,” he said carefully.

“OK … we tend to see the same patterns in people with cancer who are approaching the end of life. One of the first things many patients notice is losing their strength, their energy. I guess you’re already aware of it? “

A sad eye roll.

“No kidding. I used to run marathons. I can’t even go up the stairs now. “” That energy loss gradually gets worse. You may find that you need a nap most days, more than one, probably. So one day, you realize that you are sleeping more than you are awake. It is not painful or horrible. , it’s just immensely frustrating. Patients may find it helpful to try to plan a little in advance, saving their energy for the things that really matter. “

“Like Timmy,” interrupted Simon. “I like to know when she’s visiting, so I can sleep early.”

“I didn’t realize it, Dad,” said Sophie.

“Well, I want to give him the best, don’t I? And I don’t want to waste a second with him.”

Sophie turned to me. “See, Timmy’s dad is gone. Left when he was two. He only shows up at Christmas and birthdays. Dad is more like his real father.”

“I understand,” I said slowly, calculating the loss layers. I continued. “Often, in the end, there are no dramatic changes. That sleepiness continues. A patient finds that they almost always sleep.

“You stop being hungry and you don’t want to eat. You may even stop being thirsty. So one day, instead of sleeping, you slip into unconsciousness.

“It’s not a distinction that you are not even aware of. Your brain doesn’t respond more deeply. Sometimes, I wonder if this is how the body protects the mind: stop being afraid, you’re oblivious to everything.”

Simon and Sophie cried slowly.

“How long do you think I have left?” he asked me directly.

“I have no reason to think you’re going to die today, Simon. I think your time is short – weeks, not months, maybe only very short weeks – but I’d like to believe that we can take you home for a while if that’s what you want. “

Simone said nothing. The silence, although full of emotion, was not tense. Finally, he looked up and smiled.

“OK. I’ll do it. Maybe I’ll even get to my son’s birthday. Thanks, Rachel, I mean.”

When people ask me if my job is depressing, I answer that nothing could be further from the truth. All that is good in human nature – courage, compassion, our ability to love – is here in its most distilled form.

Rachel Clarke with her father Mark Rendall
Rachel Clarke with her father Mark Rendall

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Adele

Adele spent the last three months of her life in a specialist urban cancer center.

In all that time, he hasn’t felt the fresh air. Maybe it was too bad, even if I suspect his detention is accidental, a failure of the imagination of his doctors.

Tonight, this young woman, just 30 years old, was delivered to the hospital by ambulance to die. I know that I will soon reach out to her and that this first human touch, skin on skin, could do more than welcome to welcome her.

It is midsummer and Adele has, at most, a few weeks to live. Fear so often accompanies patients on our doorstep, but with the late evening sun pouring over her face, she doesn’t seem frightened but exultant.

I hear a chuckle, a murmur in French. Like me, paramedics are smiling. It could be its beauty, its charm or its Parisian insistence that push its trolley out, straight into the gardens, yet with joy they obey. There he basks, his eyes closed, his face tilted towards the sky, radiating a smile of pure brightness.

After so many months of being so diminished, Adele, here and now, is not supplied by anything as technical as honeysuckle, bees and a heavenly vault of heaven.

It is growing as it dies, before my eyes. I know that soon we will have to talk about pain. I will notice her fierce determination to apply makeup, when even lifting an arm is almost behind her.

Slowly she will come to trust me enough to reveal her fears about how, exactly, death will claim her and if she will manage to maintain her balance.

I will help her write a letter to her mother and sister and greeting cards for grandchildren who are not yet three years old. The doors of his bedroom will never be closed, but wide open to the flowers and skies he loves so deeply. Her smile will continue, albeit briefly, to eclipse the sun.

All of this has to come. For now Adele is glowing with life, although her time slips through her fingers like water.

  • Excerpt from Rhian Lubin. Rachel Clarke’s DEAR LIFE: A Doctor’s Story of Love and Loss is published by Little, Brown for £ 16.99. Copyright © Rachel Clarke 2020.

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