Helping patients come to terms with their situation is just one of many care services provided by the staff of Our Lady’s Hospice, writes Alison O’Connor.
Jim is sitting by his bed with a lovely blue and grey knitted blanket over his knees. The doctor is teasing him, saying he must really have charmed his carer that she knitted him such a lovely blanket.
Jim, in his 70s and a patient at Our Lady’s Hospice in Harold’s Cross, Dublin, chats for a few minutes, but clearly he has something on his mind.
“I’d like to be here this time next year,” he says to palliative care consultant Lucy Balding as the conversation moves on to a very different place — from blankets to mortality. Jim, a Dubliner with a sharp brain, is in the final stages of lymphoma, a type of blood cancer.
“What do you think the chances are?” Lucy asks him gently, to which he replies: “I don’t know.”
Is it on his mind a lot, she inquires. “Yes of course it is,” he replies sadly. “You only get one chance.”
Continuing the conversation, Lucy asks if any previous doctor had given him a “sense of how long”.
“Would you like to know?” she asks him.
“How long have I got?” he answers her with a question. “Not long, the way I’m feeling.”
Kneeling before him, holding his hand, Lucy asks Jim what he hopes for. “That’s a hard one. Anyway it comes to everyone. I’m not unique.”
The medical profession can actually be very bad at judging these things, Lucy explains, even though there are obviously statistics and past experiences to go on. At that point, Jim interjects, a little angrily, saying the doctor who gave him the original diagnosis never even explained what lymphoma was.
Jim thought it was something that would go away after a few weeks.
“Anyway I’ve no choice but to accept it. My family are very good and that’s a consolation.” But, later on, he says it is “terribly hard to adjust, beyond your comprehension”.
The conversation moves on and Jim, who looks remarkably well compared to some of the other hospice patients, remembers how he used to be able to walk for miles and had a great appetite.
“It must be extra hard to feel so sick now,” Lucy empathises. From there, the chat moves on to politics: “The refuge of scoundrels,” says Jim, sounding like a man who has read and travelled widely.
Dr Balding is doing morning rounds on one of the wards at Our Lady’s Hospice. Afterwards, reflecting on the exchange, she says that, in such circumstances, she wouldn’t directly answer such a question. She anticipates that Jim will return to the subject.
“You don’t want to ask someone a question and force them to face their own mortality.”
The method she uses is to reflect it back to the person and ask, maybe, what prompted a question.
“Maybe there is someone in the family getting married soon,” she says. “They may want to know in a ballpark way. I might ask them what they are hoping for, and that gives me an idea of what they think.
“Usually they are fairly accurate. Now they may say years, and if so you try to bring it back. If it is a man you wouldn’t ask: ‘Are you worried?’, but instead maybe: ‘Are your family worried?’. People that are here are at a level of acceptance in that they are in a hospice.”
In another ward, Margaret, who has advanced lung cancer, lies in the bed, clearly very ill.
“Can we do anything for you?” Lucy asks quietly. Margaret simply stares into the middle distance. “Alright pet we will let you be.”
Angela, in her 70s, is in end-stage COPD, a lung disease.
She has made clear that when the end comes she does not want any treatment that involves ventilation or anything else invasive, or to go to the hospital.
In a nearby bed is Fiona, a bright, chatty woman in her 50s. “I’m a great tea drinker and that’s coming back,” she tells Lucy and the small team who accompany her on the rounds. She spoke of a recent afternoon tea in the Shelbourne Hotel with a friend.
Fiona was diagnosed with breast cancer in 2012 and was doing well until a few months ago when suddenly, over a 10-day period, she began to suffer lower limb weakness. Her cancer had returned.
“You’re dealing with a lot going on and a lot going against you,” Lucy tells Fiona, who becomes tearful.
“Sometimes I say to myself it’s a lot to take in, but you have to dust yourself off and start all over again.”
The morning began with a team meeting, involving the palliative care consultant, a junior doctor, a nurse manager, physiotherapist, occupational therapist, and a chaplain.
One patient died the night before.
The chat centres not just around medication and pain levels, but how each patient is faring psychologically and how their families are coping.
Almost 90% of the patients admitted have cancer. Some arrive and die within days, others are there for weeks. A number of those attending the hospice are day patients.
Lucy recalls that before Christmas two young people died, one a man in his 40s who had young children.
“That was very hard on the ward.” As she chats, Rian, the hospice dog, ambles past. Like everyone else, he is still getting used to the newly opened light-filled, in-patient palliative care unit with its specially designed rooms. At the Harold’s Cross hospice and the smaller sister hospice in Blackrock, there were just under 4,000 patients last year.
One thing many people think of in relation to the hospice is the management of pain, approaching death.
Lucy says this is something they specialise in.
“It is controllable. That is what we are here for and that is what we do.”
However, there are lots of different types of pain, and particularly in a case of cancer, it can be complex. She raises the issue of what she calls “total pain”, where a patient is not just in physical but emotional pain. She mentions a patient who has just died, who had what she describes as a complex family situation.
“He was the glue that held the family together and when he veered towards that subject he would say ‘my pain is very bad’.”
She reflects that her job is one where you get an enormous amount of gratitude for what she humbly describes as “not doing a lot”. As a doctor, you have to keep that in context, she says. Only in her 30s, she faces a possible 30 more years in this specialty of dealing with the dying, and is thoughtful about the possibility of burn-out.
Back on the rounds, our final visit is to Gerard, very frail and dying of cancer. He had been very unsettled at night but things have improved now a family member stays overnight with him. Sitting in a chair by the bed, the Dubliner says he would love to go for a walk in the mountains.
Lucy tells him it is bitterly cold today but when temperatures rise he could be bundled up for a drive.
“I’m prepared to bide my time. I’m not impatient,” he says. Lucy asks if he has any advice for the visiting journalist.
“Just to let it be,” Gerard tells us.
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