‘I would be dead now if it hadn’t been for the hospice’

When Marian Meehan’s oncologist first suggested she attend a hospice, her first reaction was, “but I’m not sick. You only go out there to die”.

However, she was persuaded that being referred to day services at St Francis Hospice in Raheny, Dublin 5, would help her with living. Having completed radiation and chemotherapy since her initial cancer diagnosis at the start of 2018, she was on “maintenance” treatment for a tumour in her lung, with secondary cancer in lymph nodes in her chest. At the hospice she started with a five-week course incorporating breathing exercises and walking and soon felt the benefit.

“I still do all that at home and it has helped me an awful lot. I think I would have been dead if I hadn’t come down here to do it,” Marian says, speaking from the hospice during one of her regular visits. “It gives you energy and it gives you initiative and gives you back your strength.”

In the hours she had spent there before we talk, “I got my hair done, I’ve done me art and had a foot massage. That’s great getting all that done in the one day and we have a lovely meal.”

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When the conversation is over she will be joining a group for a singalong. “It’s very entertaining and takes your mind off everything.”

Of the staff, 69-year-old Marian says: “They counsel you without you even know you’re getting counselled. You do feel better when you talk to them. There are things you wouldn’t tell your family you can tell them. Only for them, I think I would have gone two years ago.”

“When I first met Marian she had stopped her bingo. She was desperate to get on the bus and go to bingo, and to go shopping. She set those goals right at the beginning – and she did it,” senior physiotherapist Beth Carr recalls.

Marian goes to the bingo hall two nights a week with her sister Kathleen. She also plays bingo three times a week at home in Priorswood, Coolock, with a group of friends. It is just her and her husband, who has his own health problems, living in the house now but her seven children, ranging in age from 33 to 51, all live in the area.

“I have been playing bingo since I was 12 I think – I used to go with my Ma and I love it. My sister who comes with me is luckier,” Marian says.

Palliative care is an additional layer of support for people with life-limiting conditions, often running in parallel with treatment, explains Carr. “Our primary focus is quality of life and symptom management.

“We are seeing people much earlier than we used to. Early referrals to palliative care tend to do better: their symptoms are managed and they have better quality of life.

“It can be a bit daunting when we ring people and say ‘We got a referral, were you expecting to hear from us?’ and they say ‘no’.” But when they come in, Carr believes 99 per cent of people are pleasantly surprised and would say it was not what they would expect. “It’s not all doom and gloom.”

“Living for today, planning for tomorrow” is the theme of Palliative Care Week (September 11th-16th), during which the All Ireland Institute of Hospice and Palliative Care (AIIHPC) runs events to increase awareness and understanding. Misconceptions about palliative care mean people who could benefit from services may miss out, says AIIHPC director Karen Charnley. They want to support people “not to feel scared”.

People often think of hospice care as being just for the last days and weeks, she points out. While that can be the case for some, for others it involves being able to access respite care, symptom management, home visits and day services.

St Francis Hospice amalgamated its former day care and outpatient services into a new, more streamlined patient-centred service in May 2022. This model of Outpatients and Day Services (OPDS) involves collaboration by a multidisciplinary team to devise the best plan for each individual, according to their wishes, needs and preferences. Where possible, appointments are scheduled together, with a patient seeing, say, a nurse, physiotherapist and occupational therapist (OT) before going on to avail of complementary therapies.

Some people don’t ever want to talk about death and never get to that point

—  Senior physiotherapist Beth Carr

“So, over a block of two hours they might have seen four different teams. If that is too much for them we will split it up,” says Carr. They adapt to individuals’ needs.

Marian is an example of somebody who attended the service, did really well and was able to step back from hospice care for a while. She was referred back after a hospital admission earlier this year. She had needed more chemotherapy when scans last February showed her cancer had started increasing in size again.

“Now I am in a little bit of remission and am back on maintenance since last week. I had a scan and it has gone back to where it was last October.” She says she will be on maintenance drugs for three months “until I get my next scan and see the way it goes from that”.

St Francis Hospice, which has a second centre in Blanchardstown, serves north Dublin city and county. When somebody is referred by a hospital or GP, they will have an initial assessment by a nurse, physio and OT working as a team. Lasting about an hour, it covers all their physical symptoms, their emotional health, their spiritual needs, family circumstances and what support they have. The hospice tries not to have a waiting list for the OPDS, says Carr. If there isn’t immediate capacity to take somebody, the community team will do the assessment and refer them to individual services until they can be accommodated by the programme at the hospice.

“We see a lot of oncology patients, a lot of respiratory conditions and some of the neuromuscular [disorders] such as MND (motor neuron disease) and MS (multiple sclerosis). We do a lot of work around breathlessness management and exercise – we harp on about that; a lot of rehab, just trying to get people up on their feet and help with pain management.”

Often people attending the hospice think they cannot do exercise, says Carr. “But evidence shows that exercise is beneficial for fatigue – it is obviously getting the balance right between not doing too much and doing enough. Doing a bit of exercise gives you a bit of energy.” It is discussed more in terms of “movement” rather than “exercise”. They encourage patients to go out and to walk around the shops, rather than working through an exercise programme. “To make it meaningful activity that they enjoy. If it is tied in to things they like, they are more likely to do it and get more out of it.”

People with a life-limiting condition tend to think about death more than those in full health. While there is professional therapy and lay chaplains at the hospice, other members of staff never know the moment somebody might want to share what’s on their mind.

Carr remembers when she started at St Francis Hospice, she was told it was okay as a physio to just sit and listen. “You could just be that person at that time that they need. Sometimes it is just talking through some of the things that are going on for them. It’s being able to listen and take the time with them is so important.” As for discussing end of life, she says, “we take it on their lead; some people don’t ever want to talk about death and never get to that point”. But, guided by the individual, staff will encourage them to talk about future care planning, particularly if, say, they are living alone.

“If they really don’t want to discuss it, we are led by them. It is such a difficult topic,” Carr adds. “If you are not ready to discuss it, it is not something that should be pushed.”

The importance of conversations about preparations for end of life is reflected in the theme chosen for the 10th year of Palliative Care Week (thepalliativehub.com). A webinar on teaching teenagers about palliative care, during which a free teaching resource for secondary school pupils will be demonstrated, is among about 30 events organised. Set up in 2010 on a 32-county basis, the AIIHPC has 28 member organisations, including charities, health and social care organisations, universities and hospices. (It was only supposed to operate for five years but a need was identified for it to continue.)

Charnley says we may presume that our family members know what we want at end of life. However, when the time comes, it can be greatly reassuring for loved ones if we have made our wishes clear. The Irish Hospice Foundation offers a way to do this with its Think Ahead Planning Pack for €5 plus postage.

They have help improved my life but I wouldn’t be afraid now to die

—  Marian Meehan

“I think we all assume we want the same but actually we probably don’t,” Charnley says. “It has been found to give people comfort, when the need arises, if they are able to try to ensure that the person is cared for where they would want to be cared for.” Marian found that attending the hospice helped her to find a way to have these difficult conversations with her adult children. Before, they didn’t want her bringing up such topics as her funeral and were asking her why she was going to the hospice.

“I say you have to listen to me, this is what I want and what I don’t want. They are beginning to understand that I need to come down there to keep me together – for their sake, more so, and my husband,” Marian says. The day services have helped her face her life-limiting condition more calmly and rationally.

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It’s a time of life you know what’s important, “especially when you are leaving the family behind, that’s the worst part of it. You don’t realise when you are younger what your family means to you,” says Marian, who has nine brothers and two sisters. You are asking yourself did you treat people all right, making sure you didn’t do any harm, she explains.

“I hope I am a good person – I think I am. When I was in my health we always looked after the old people, me and me sister. We always cleaned their houses.”

She has thought about availing of residential care at St Francis Hospice if necessary. “I have 19 grandchildren and 11 great grandchildren and I wouldn’t like for the younger ones to see me really, really sick.” Her own mother died at the age of 53, seven weeks after being told she had cancer. “She was 14 stone (89kg) and she went down to three and a half stone (22kg]). I can still see my mother at three and a half stone. That was 20 odd years ago but it’s still there in your head.

[ Palliative care is a new journey for me ]

“This place is gorgeous,” Marian adds. “My father came here but he was only in it for two and a half days. But the help they gave us and what they done for him was tremendous. I always said I’d come down here if I was sick.”

Now, Marian says she would have come to the hospice for its day services as soon as she was diagnosed in 2018 if she had known then what they do.

“They have help improved my life but I wouldn’t be afraid now to die. They kind of give you the strength that you need.”