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18 November, 2019 00:00 00 AM

All the exhausted husband of my dying patient wanted was a place to rest his head

If we can afford another superfluous scanner and another drug that offers no survival benefit, we can afford armchairs for relatives
The Guardian
All the exhausted husband of my dying patient wanted was a place to rest his head
‘When was the last time we heard of a concerted plan to support relatives? Hospitals rely on them to help us care for patients, especially the elderly, confused, frightened and dying.’ Photograph: Angela Wyant/Getty Images

In the midst of contented days, their lives are ruptured when she falls seriously ill. With her local hospital stumped, she is shipped far away to one in the city. And here, the bad news starts raining down. My team and I glumly conclude that there has hardly been a patient where so much has gone wrong so quickly.

She is an articulate professional, polite and factual. No, none of my suggestions worked. Yes, she still feels terrible. Please, can I go away but not take it personally because she hates the noise?

She may once have called the shots but now he is her voice. Some days after we first met, he and I are sitting down with a palliative care nurse. He says his mind has been swimming with so much information that nothing makes sense, so would I go over things very slowly? Of course, I reply. The nurse nudges the tissues closer.

I revisit the details of her diagnosis and why it took so long to put the pieces together. Smaller hospitals have less resources, he reasons. I tell him that she has an aggressive illness whose myriad complications stand in the way of therapy. I see, he says. She is too sick to treat and too unstable to send home, I venture. It is likely that she will die in the hospital. I fear it too, he says. Suddenly I am struck by the observation that the more dire my pronouncements, the greater his fortitude. And I can’t help wondering: what are people like him made of? How do they come to possess the resilience and grace of thousands?

“Is there anything else I can do?” If ever there was a more rhetorical question.

“Actually, there is.” His tears are falling freely now.

“Doctor, can you get a chair? It’s OK for me but her mother is old and has a bad back. I can’t bear to see her spend the nights sleeping on two joined-up chairs.”

The nurse audibly gasps, giving me an instant to digest his words.

“You’ve been sleeping on a chair all this time?” she exclaims.

Everyone is sympathetic but the resources are missing

They haven’t left her side because she’s frightened. So they take turns sharing the two chairs, nodding off only to be awoken by beeping machines and entering nurses. The sleep deprivation has broken him.

“We need to make you comfortable,” the nurse declares.

It’s almost evening. Soon, the hospital will go into night mode where every non-urgent problem will be deferred until dawn. The nurse and I silently calculate that of the very few things we can get right, making him comfortable might just be one.

We promise more than we can hope to deliver. She goes in search of a mattress. My job is to find a larger room. As I call in favours, I can’t help but recognise the paradox of my freedom to prescribe tens of thousands of dollars of futile interventions but failure to find a grieving and exhausted relative a place to rest his head. Everyone is sympathetic but the resources are missing. Then, a bed appears in the nick of time, thanks to a manager who believes that my request is urgent, even if it means shuffling other patients.

That night he lies down on a mattress and awakes to find a broad armchair in the room. It’s nothing, but he considers it the greatest act of humanity. I am floored.

Barely a month goes by without a new health announcement. Ribbons are cut and politicians in hard hats turn the soil at another building site. There is money for new hospitals, new drugs and new technology.

But when was the last time we heard of a concerted plan to support relatives? Hospitals rely on them to help us care for patients, especially the elderly, confused, frightened and dying. We ask them to report pain, press the buzzer and entertain patients. In the absence of relatives, we sometimes pay nurses to simply sit with someone.

But what do hospitals provide relatives in return for spending their days and nights at the bedside? Rather little. Most understand the pressures of the hospital system and are grateful to professionals for helping the patient.

But they wouldn’t mind a comfortable recliner, a warm shower and an occasional tray of food when the cafeteria is closed, amenities that are unlikely to be exploited but just might sustain people through what can be an overwhelming and lonely experience.

Children’s hospitals are designed with the assumption that a parent will need to stay with a child. But many adults are no less stressed by hospitalisation and often, the best treatment for a delirious patient is the presence of a familiar face. With an ageing population, we will not only need to make room for relatives but also their walkers and wheelchairs, not to mention their other often modest needs.

Relatives would be hard-pressed to agitate for change but a society that views illness in all its dimensions must reflect their needs in the way hospitals are designed, administered and funded. If we can afford another superfluous scanner, another robot and another drug that offers no survival benefit, we can afford some padded armchairs and designated sleeping spaces for relatives.

Some days later, she is being transferred to a hospice. We are all relieved, partly since he will have a better place to sleep. I stand at the foot of her bed, taking in her peaceful face and kind eyes despite all that she has endured. She is unusually alert to hear me say goodbye.

“My time is short,” she responds, “and I may not get to repeat this, but thank you for all that you have done.”

At such times, it’s customary to reply, “I haven’t done much,” but I just listen with a heavy heart, admiring how a prematurely dying patient for whom no intervention was possible can still find something to be grateful for. What are such people made of and why can’t we all be like that?

She is in a visible rush to get her words out before she falls asleep. “The thing is,” she proclaims, “you said something, then followed it through. And I can’t tell you how much that means to me and my family. I will never forget that.”

My throat constricts. Listening to such high praise, a stranger might reasonably think that I’d done something to save her life or at least, mitigate her symptoms. But he knows and I know that’s not it, because we have both followed her gaze which has landed on an object in the room. She is talking about the chair, of course.

 

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Editor : M. Shamsur Rahman

Published by the Editor on behalf of Independent Publications Limited at Media Printers, 446/H, Tejgaon I/A, Dhaka-1215.
Editorial, News & Commercial Offices : Beximco Media Complex, 149-150 Tejgaon I/A, Dhaka-1208, Bangladesh. GPO Box No. 934, Dhaka-1000.

Editor : M. Shamsur Rahman
Published by the Editor on behalf of Independent Publications Limited at Media Printers, 446/H, Tejgaon I/A, Dhaka-1215.
Editorial, News & Commercial Offices : Beximco Media Complex, 149-150 Tejgaon I/A, Dhaka-1208, Bangladesh. GPO Box No. 934, Dhaka-1000.

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