A day in a hospice: ‘Will I last until Christmas?’

There are many kinds of patients at Our Lady’s Hospice. Some have their funerals all planned. Others are in ‘absolute denial’. And all want to make the most of their last days

 

Jane’s funeral is all planned, her legal affairs are in order and she’s getting her hair done while chatting with her niece and brother. “Sit down in that chair there,” the 83-year-old tells me when Dr Stephen Higgins, a consultant in palliative medicine, introduces me. “Because I have to tell you, you look tired.”

Her phone rings. “I’ll talk to you later,” she says to whoever is calling. “I’ve a roomful of men here, and I don’t know which of them to invite into my bed.”

“I hope that was someone you know well,” Higgins says, laughing.

Jane starts praising Higgins and the staff here at Our Lady’s Hospice in Harolds Cross, in Dublin. “I have to tell you I couldn’t move when I came in here, and now I can move marvellous.”

She has breast cancer, and after a series of operations, including a mastectomy, doctors found that it had spread to her liver, spine and lungs. “I asked them straight, ‘What sort of life can you give me? How much time are you giving me?’ [He said,] ‘The cancer is all through you. The best place for you is the hospice.’ ”

She goes quiet for a moment.

“Would you have preferred he hadn’t told you?” Higgins asks.

“No, no, Jesus no,” she says. “I like people to speak straight with me. I’m straight with them. You know that. I’m a very straight person.”

She is glad to be at the hospice. Some of Jane’s siblings died here, and she knows the place well. She likes Higgins but has no deference for the medical profession. She says of one of her former doctors, “If he was a bar of chocolate he’d eat himself.”

She talks about staff at a different hospital whom she believes didn’t properly look after her sick brother years before. She frets about this. Higgins advises her to write a letter to that hospital’s management. (“People often feel the need to resolve things like that,” he tells me afterwards)

Jane has another idea. She turns to me and asks, “You don’t know anyone in the IRA, do you?”

She’s silent again. “I’m delighted to be here, and I appreciate you taking us in,” she says. “But I thought that I would get a little more out of life . . . I keep saying to myself, ‘Jesus, maybe they’ll come in and say they made a mistake.’ ”

“No,” Higgins says softly. “No.”

“I always said I wanted to go to 84,” Jane says.

The staff at the hospice are getting used to their new palliative-care inpatient unit. It’s bright and airy, and smells of fresh paint.

“It’s still a bit echoey,” Steven McDermott, the ward manager, who has worked here for eight years, says. “But we’ll warm it up with a few pictures. The idea was to get as much light into the building as possible . . . The nurses can find things now, so they’re not getting the numbers on their pedometers.”

At this hospice there’s a hairdresser’s and a dog named Rian. (“It means Little King,” says Jeanne McDonagh, the communications manager.) Gloria, a gay and lesbian choir, performed recently, and actors from Fair City visited the week before. It’s bright and cheerful. Workmen are creating new gardens outside. Everyone greets each other with a smile.

“People expect it to be quiet, with candles, but there are lots of things going on,” says McDermott.

Most of the hospice’s patients stay at home and come in as day patients or for respite. There are 11 people in the inpatient ward today. Stays can vary from a few days to many months.

“Our median length of stay [at the inpatient unit] is 12 days,” Higgins, a self-confessed number head, says. Some die here; some return home for a while. “They all have advanced incurable illness. The average age is 69. We usually have one or two in their 30s and 40s . . . With young parents it can be particularly upsetting.”

Higgins has worked here for 11 years, and his own father died here. It’s a privilege to do this job, he says. “We constantly see exceptional people. How they deal with what’s been thrown at them, and how families deal with it: we see amazing, wonderful stuff.”

Does it get him down?

“Occasionally you go home saddened,” Higgins says. “But it should only be occasionally. You need to leave it behind.”

On the rounds

I join Stephen and Steven on their rounds. At a preround meeting with a social worker, occupational therapist, pharmacist, physiotherapist and chaplain, they discuss the varied needs of their patients – their pain, symptoms, complex medications, psychological distress and, touchingly, hopes for the future. A woman wants to see her dog one last time. A man would like to go home for the day. A woman looks forward to Christmas.

When we visit each room Higgins goes in first, followed by McDermott, a GP named Brendan Crosbie and then, after Higgins has explained the situation, me.

Robert, who is 73, is lying in bed beneath a single blanket. He is their “star player”. Robert’s son, who had been caring for him, is coming home from Australia for Christmas. He had left Ireland expecting never to see his father again.

“You might write a headline on me,” Robert says.

“Your son is going to get a pleasant surprise,” Higgins says.

“Good!” Robert replies, chuckling, although he’s not convinced he’s doing much better. Higgins observes that a few weeks ago he was scarcely getting out of bed and now he is managing short walks.

“Will I go on living for long?” he asks.

“That’s the question,” Higgins says.

“No. No. I don’t expect an answer,” Robert says quickly. He knows he is dying.

“ ‘I don’t know’ is the answer,” Higgins says gently. “You’re doing better than expected. Better this week than last week and better last week than the week before.”

Later Higgins says, “We tend to be very direct with patients. More direct than [other medical professionals]. There’s often a paternalism where patients don’t know what’s going on or the family don’t want an elderly relative to know the truth . . . Eighty to 90 per cent of patients want to know what’s going on, good, bad or indifferent.”

Geoff has lesions on his liver and has a respite bed for a week. He’s quite bubbly. “I take every day as it comes. I’m a very positive person. I’m here today. Maybe something else will happen tomorrow. I always look to the future.”

Higgins asks about his symptoms. “On an even keel,” he says.

And his appetite? “Can’t stop eating.”

All isn’t quite as well as it seems. He has fallen a few times, but he’s eager to explain these instances away. Higgins isn’t so sure that these falls are insignificant and does a few cognitive tests. He asks Geoff to recite the months of the year backwards. Geoff misses out February. “It’s tricky,” Higgins says. “Take your time.”

Geoff has one crib. He points to the garden where the workmen are putting in new plants. “The new trees there block everything. You can’t see beyond them.”

Higgins is slightly taken aback by this. He leans down to see from Geoff’s perspective. “You’re right,” he says. “I hadn’t thought of it, but if you were lying down the line of sight would be different.”

Geoff finds a silver lining. “I suppose in summer you could sit out there,” he says brightly.

Peter is very close to death. He is lying on his back with his mouth open. He has a crucifix around his neck. Higgins tells Peter that he is there. Peter’s eyes open, and he looks at him.

“We’re just checking how you’re doing,” Higgins says gently. Peter tries to smile. “You’re very tired, aren’t you?” Higgins says. “You’re best just closing the eyes and resting.”

No family are present. Peter is divorced, with several adult children. None of them has visited. He has one friend who comes in. A few days ago, when he was still strong enough to talk, he said, “I lost everything precious to me.”

“We never get the backstory here,” Higgins says when we are back out in the corridor. “I’m sure we have people who have colourful pasts, but we get the best of people. He will die very quietly over the next few days. We will be with him, and we will make him comfortable.”

Does he often see people who are dying alone?

“You often see bridges get mended or family members reappearing, but you also see things so tangled that, in the midst of what’s happening, they can’t be resolved.

“We had a lady in last year and we couldn’t find anything about her. She presented at A&E giving a few different spellings of her name. She had cancer. She didn’t have a GP and was unknown to social services . . . The guards knocked down her door and found a wedding photo and [from that] tracked down some relative living in the country. The neighbours didn’t know her. No one knew her. She just lived in the house, walked to the shop, then died here.”

Bad leg

Simon has late-stage prostate cancer and “a bad leg”. The physiotherapist visited him yesterday. “Why would I be bothering with exercise?” Simon said before concluding, “Ah, I suppose you have to do your job.”

Then he did three sets of squats and walked to the bathroom and back 10 times. “I felt good after that,” he says.

Higgins asks if there is anything he can do for him. He had a massage, he says, and he had never had one before. “It was nice . . . Was that the psychiatrist?”

“I think it was probably the complementary therapist,” Higgins says. “If the psychiatrist started rubbing your leg we’d be worried.”

They both laugh. Higgins says he will organise another massage, and they spend a bit of time talking about his leg.

“His cancer will catch him before long,” Higgins tells me later. “But, for the time he’s here, whether he can walk or not is a huge deal. When you are dying your hopes change. It’s about different targets, different goals. Sometimes reframing the hope is helpful.” He pauses. “Sometimes it’s not.”

Most of the people we visit today are men in their 70s and 80s. There are some patients I do not see, because they are too sick or emotionally vulnerable.

People deal with death very differently, Higgins says. “There is sometimes absolute denial, where the person actually believes it isn’t happening . . . More often people flick backwards and forwards. They’re talking about next summer one minute but 10 minutes later they’re talking about the fact they won’t see Christmas . . . The problem is in the room, but they can’t be looking at it all the time.”

He sees a huge range of people come through.

“You see younger people who have so much they’re leaving behind. Then you also meet people in their 90s, and if they’ve lived 90 good years it’s hard for them to accept that this is it.”

He sighs. “I don’t know, if I woke up in the morning and it was me, that I wouldn’t put my head in a bottle of gin and pretend it wasn’t happening.”

“My God, it’s a football team,” Joe says when we enter his room. He is fully dressed and watching television.

Higgins asks Joe how he is feeling. “The pain is not too bad,” he says. He points to where it hurts on his torso. His appetite is down, though, and he misses his wife, who is “a gem”. She’s coming in later, and he asks if he can go out for lunch. He is worried that activity will “accelerate the cancer”. Higgins tells Joe that being active is good.

Then Joe says, “There’s a battle in my head. In the mornings I’m a little disoriented about where I am. It’s a bit frightening.” He asks Higgins if it’s due to the medication.

Probably not, Higgins says. “It’s a change of scenery here. I’m getting a bit disoriented myself.”

He is very gentle with him. As we go out Joe starts to speak, hesitates and then asks, his voice cracking a little, “Will I last until Christmas?”

Higgins stops. There are tears in Joe’s eyes. He reaches for a tissue and starts to dab them. “You will,” Higgins says. “I think you’ll last a bit beyond that.”

He sits down again and explains to Joe how the cancer in his pancreas is progressing. It’s “still there but it isn’t doing much. It’s very slow in what it’s doing.”

Joe composes himself. “Well, I’m beginning to accept certain things. There’s nothing more I can wish for, I suppose. Well, that’s it. I won’t delay you.”

CAIT O’MAHONY’S STORY

‘I live a day at a time. I try and go out and do something every day’

Stephen Higgins says he would like to see more GPs trained in palliative care and more people referred to the hospice earlier. Cait O’Mahony, a day patient, is 64 and not in imminent danger of dying, but she has motor-neuron disease.

She has a Donegal accent despite 40 years living in Inchicore, in Dublin. She uses an electric wheelchair. She laughs a lot. In May 2015, as head chef with the Oblate fathers, she was finding it increasingly difficult to lift the saucepans. “I thought I was just getting old,” she says.

She was sent to a neurologist, and it was eventually found that she had the disease. What was it like to get that news?

“Oh.” She tries to find the words. “I thought my world had ended. I couldn’t see a future. I really and truly was devastated . . . I remember, when I was a young girl, David Niven died from motor neuron. It always stayed with me. When he told me I thought of David Niven. And then there was shock and the feeling that my life has ended. But, you know, it doesn’t end.”

She and her husband were planning a holiday in Spain. The doctor suggested they go anyway. “ ‘Go off and enjoy yourself.’ ” She laughs. “At that time my symptoms were minimal apart from my hand. So we went off.”

Reality really dawned a little later, when she was in Donegal on a walking trip and started having difficulty with her leg. Around this time she went to bed for two weeks and didn’t leave it. “And then work rang and said, ‘Cait, we need supplies!’ So I brushed myself down and went back to work.”

This summer she stopped working. “I was in the way. They were so kind, but they were just accommodating me.”

I point out that they probably needed her experience.

“Maybe they did,” she says and smiles.

That was when the doctor recommended she start coming to the hospice.

“My first reaction was, ‘Oh, no, not the hospice.’ But then I said, ‘Cait, grow up. Take things on board.’ ” She smiles. “I’m an optimist a lot of the time.”

So every Tuesday she sees a social worker, gets mindfulness classes, t’ai-chi classes, reflexology and a three-course lunch.

But, most importantly, she feels understood. Everyone here is on the same path, she says. “Everybody understands that you are going through a difficult time. The support is wonderful.”

They encouraged her to do things she would never have considered otherwise. “I’ve updated my will,” she says. “I’ve also filled in this book of all my wishes.”

What wishes? “Things I want when I die. My husband helped me. It wasn’t easy. But we had a laugh about it . . . I said I wanted to be cremated. I’ve had a pacemaker since after the birth of my second baby. My husband said, ‘You could blow up the crematorium!’ ”

And now that she has those things done she’s living her life. Her daughter is getting married soon. She’s treasurer of the variety group in Inchicore.

“I live a day at a time. I try and go out and do something every day. Yesterday we went to town and did Christmas shopping . . . On Saturday we want to the theatre . . . On Sunday we went to a hotel with my two daughters and their partners.”

Sometimes she wishes she could live her life backwards. “But you know that there’s nothing can be done except live each day for what you get from it.”

If she needs end-of-life care she would like to come to the hospice. “And I’ll have my funeral with the Oblate fathers in Inchicore, because I know the whole community there, and I love them, and vice versa. And then I want to be cremated.” She laughs. “And I hope I don’t blow up.”

Some names have been changed. For more information see olh.ie and lightupalife.ie

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