'Palliative care doesn't mean you're going to die soon'
Palliative care is an often misunderstood specialty - while it does encompass end-of-life care - it is so much more. Emily Hourican talks to Joe McCann (63), who was diagnosed with Stage 4 cancer and recieved support and pain management strategies from St Francis Hospiceby Emily Hourican
Most people, when they hear the words "palliative care", think of end-of-life care and often respond with fear. In fact, this is a misconception. Palliative care is something much more holistic: an approach that aims to improve the quality of life of patients and their families as they face life-threatening illness, through the prevention and relief of suffering, and the treatment of pain and other problems, including physical, psychosocial and spiritual.
It is life-enhancing rather than specifically end-of-life, the kind of wrap-around care that can make a huge difference to quality of existence and overall happiness. So it has been for Joe McCann, a school caretaker from Dublin, who is 63 and was diagnosed with prostate cancer in August 2018. By the time he was diagnosed, the cancer had spread into the bone in Joe's leg. He has Stage 4 cancer.
"I had six months of chemotherapy, every three weeks, and radiotherapy for 39 days straight, and a whole lot of morphine tablets," Joe says. "That was in the Mater Private. They were great. After about seven months, I was put in touch with St Francis Hospice in Raheny. What hit me first when I heard 'hospice' and 'palliative care' was: 'I've one foot in the grave!' But the hospital said, 'Look, you're not going to die tomorrow - just go and see what it's like.' So I went up there, and I have to say they are absolutely fantastic. I found it wasn't what I thought."
St Francis Outpatient Department is staffed by a multi-disciplinary team who provide complementary therapy, lymphoedema service, physiotherapy, occupational therapy, social work, chaplaincy, nursing and medical review. The department is supported by administration staff, hospice drivers and a dedicated team of volunteers who offer transport, complementary therapies, admin and hospitality.
"Before I started," Joe continues, "I was kind of down some days. I just felt down. I had a hip replacement just before the cancer diagnosis, then three months later this hit me - the first I knew was a terrible pain in my leg - and I had to pack in work because I couldn't get up and down ladders or lift anything heavy. I've worked all my life, I worked in a school in Raheny for 19 years - I'd only another couple of years to go to retirement - and then... nothing. When you're stuck in all the time, you do get a bit down, and I used to be a bit snappy."
At St Francis, up until lockdown, Joe was attending regularly for therapies as needed, including relaxation therapy (involving foot massage), occupational therapy and physiotherapy. "You couldn't ask for better people," he says. "Noreen Synnott brought me in for relaxation. She had music in the background, and she massages your feet; it was the most relaxing hour I ever had. It was brilliant."
He also engaged in physiotherapy, including exercises to do daily at home, and occupational therapy with Julie. "She talked to me about stress, exercise, learning to breathe. I didn't know any of that - I thought you just breathed and that was it. So now I do exercises and breathing in the morning: it relaxes me totally."
He found practical support from Karen, a social worker, who talked him through the financial implications of his diagnosis and helped with support applications. "Karen was able to tell me I was entitled to certain things - things I didn't even know about. All the staff up there are amazing, absolutely fabulous."
Some of the benefit has been social: "There are other people there who have cancer, who are going through the same things, and you can talk to them; just have a chat and a cup of tea. Sometimes we make each other laugh. It brings you around - makes you realise that just because they mentioned the word cancer doesn't mean you're automatically going soon. Going there takes you out of yourself. It's only two hours, but you're out, you meet other people, you're talking."
Until coronavirus hit, Joe was going to St Francis twice a week - "They sent out a driver to pick me up and drop me home" - and when lockdown meant he could no longer do so, "I felt a bit of a bang with that," he says. "You do miss it. I got so used to going up. If Covid doesn't kick off again, hopefully I'll be back up there soon," he adds. "It's a hard battle, especially with this Covid thing. I was self- isolating very strictly. I couldn't even see the grandkids. They'd come down and I'd wave through a window."
In the meantime, Joe is being watched over at a distance. "The nurses ring me every two weeks; Noreen rings me to see if I'm relaxing, Julie as well. They don't forget you - they check in every couple of weeks. I've a little garden, just flower pots and that, and they sent me out plants and information on how to trim plants… who would think of that?"
In terms of ongoing treatment, Joe is "getting radium at the moment, an injection every month. It's a maintenance thing. Last week, I was feeling a pain in my other leg, and one of the nurses was on. I was telling her about it. Next thing, I got a phone call to say there was an appointment made for me to see a doctor. She got on to the Mater straight away and arranged that. When I started going up there, even my daughters were saying, 'There's a big difference in you.' I'm not as stressed as I used to be. I just take the days as they come. Planning is hard so I take it day by day."
Joe's daughter Vivienne concurs. "You see the empathy and compassion they have for everyone at St Francis. For my dad, it was a major turning point. I noticed a difference almost immediately. He was less anxious, less irritable - he was still on all the same medication, so the change was down to his mindset. My dad is someone who would find it very hard to relax. He's been a hard worker all his life. For him to learn how to switch off and relax was a major difference. Learning how to breathe slowly meant he was a lot calmer."
Vivienne thinks back to August two years ago, the time of Joe's diagnosis: "Every day it snowballed, more and more bad news. With my dad, you could tell he was traumatised, but you're trying to keep a positive mindset because you want him to have a positive mindset. You're crying at home, then with him you're saying, 'Come on, Dad, you can do this…!' But once you hear the words 'Stage 4, terminal', it's a different level of bad news," she says. "The hospital were brilliant and he got all the treatment he needed, but when things started to change for him was when St Francis got involved. When I first heard 'palliative care'... you think right back to the days when palliative care meant 'that's it'. But you learn a whole new meaning for palliative care - that it's a support system for someone who's in the kind of pain he was in. It's about coping with cancer, living with cancer, trying to be positive for yourself and your family. Even though you're around your family, they're not going through cancer," she points out. "When you're in a room with other men your age, who are going through the same experience, it reinforces that positivity. He would say, 'There's a guy up there the same age as me, with the same thing, and after five years he's still going…' That was very positive.
"As the father of the family," she continues, "I think he felt he had to be the strong one, even though he was the one going through it: 'Don't be worrying about me, I'll be fine…' You could tell he was not fine, but he never said it to us. When he was at St Francis, he could say he was in a lot of pain; he could say how he was feeling. He was offloading his emotions, and they could help him deal with how he was feeling, where he wouldn't put that on to us because he didn't want us to be worried."
As an example of the intense level of involvement, Vivienne describes one practical response: "The trigger for my dad's anxiety is driving. He gets so anxious when he's driving. He had one visit and he said something about the driving situation, and straight away they said, 'We're going to remove that stress. We'll have someone come out and collect you, and we'll drop you home.' That made such a difference.
"You read so much about people who have cancer," she says, "but it goes in one ear and out the other, until it hits your family. The statistics now... it's going to hit most families. St Francis is supported by fundraising, and it needs a lot more help. We had planned a huge fundraiser that was cancelled due to lockdown; it has been rescheduled for next June. I just want to get out and start raising money for them. There was such a difference in my dad's personality once he started going there. I think he felt: 'OK, this is something I can live with. There are other people going through this with me. I have the support of St Francis Hospice, I'm being looked after.' I don't think people really know how much of cancer is mental - trying to push on through pain, to keep the positive mindset going. And right through lockdown, they kept checking in. The massage and reflexology had to stop, but they were still in contact. They become friends. You get to know them by name, and they know you - you're a person, not a patient."
Palliative Care Week 2020 runs until September 19. Visit thepalliativehub.com for details.
⬤ Kaye Kealy is a community palliative care team lead based in Our Lady's Hospice, Harold's Cross. "We have two teams based on site," she explains, "that cover different geographical areas, a third team based in Blackrock, and a fourth in Wicklow. What we aim to do is to bring the same approach to quality of life and good symptom management, to support patients and their families." The palliative care teams work with existing teams, including GP and public health nurses, to come up with a plan of care to support patients at home.
⬤ The teams get referrals from hospitals, GPs or other palliative care teams. "They send us the information, and why they think a patient would benefit, and we make an initial assessment in the patient's home or at the hospice. At that assessment, we identify the problems and where we might be able to help. Pain is one of the most likely causes for a referral, so we would look at what treatments they are getting and sometimes it's a question of educating them on the correct use of medication. A plan of care is drawn up and we communicate this to the GP. We work as a multi-disciplinary team, including doctors and clinical nurse specialists, and a social worker, with access to physiotherapy, occupational therapy and other complementary therapies, all with training in palliative care. We don't see the patient in isolation, but rather in context with their family."