This is what it takes: The emotional investment of palliative care
At our Hospice, we often talk about the amazing care our staff provide for our patients. Elizabeth Palfreman, our Head of Fundraising, recently said that what she admires about our staff is they ask “why not?” never “why?” when delivering our essential palliative care. When you examine what it takes to deliver this level of care every day, it’s crucial to understand just how much time, effort and emotion our staff invest into their jobs – so we decided to take a closer look at the working life of one of our treasured caregivers.
Gina Pavlo has been a Specialist Occupational Therapist at our Hospice for nine years, so has invaluable insight into what it takes to be a part of our Hospice team. We spoke to her about the work that goes into emotionally supporting and caring for our patients through the hardest of times.
You Cannot Fake It
When it comes to palliative care, patients and family members want authenticity. You cannot turn up all smiles and pretend everything is normal. The sooner you are able to understand that and communicate on a human level with the patient the more in tune you are going to be with their needs. There is nothing worse than someone trying to make everything jolly.
You cannot start off with a patient saying, “Okay, we’re going to do this, we’re going to do that”. People don’t come into palliative care with a bucket list to hand. What we have to give them is time, because often it’s something they haven’t been afforded up to that point. Prior to arriving in our Hospice, many of our patients have been rushed and delivered a huge volume of information that is overwhelming. Our key job is to listen to them and to hear their needs; that takes discipline and patience.
Balance Is Key
We recently had a patient who had led an incredibly active life travelling the world as a ballet choreographer, but who had a very late stage diagnosis. So he was bed-bound and, very early on – before I’d even been able to assess him – he said to me: “Will I be able to walk again? And don’t sugar coat it for me.” So I was honest with him. Even when someone gives you permission to be blunt you can still be sensitive to their situation.
Later on he was working with a physio and myself, and he was so weak he couldn’t even lift his bottom off the bed. But he was really trying, and the physio wanted to give him encouragement and he got very angry – because at that moment the frustration was too much for him. So it’s about finding that balance between telling the patient how hard it’s going to be while encouraging progress without ever giving false hope. That last bit is particularly difficult, because as people we naturally want to offer hope to others.
Early on he was testing me, and I would likewise see what he would react to. It took a while but we soon developed a very strong relationship.
In contrast I had a patient who joked about everything. I worked with him in the community for about a year, but because he was often short of breath he would prefer to communicate through email. So I have this long email chain with him, which I will always treasure. He recently passed and I shared the email chain with his son. Upon reading them his son said to me, “I can see you really got to know my father, you really understood him.” That means a lot, to know that I found the right balance to form a genuine bond and relationship with a patient.
I recently had a patient who was young – too young. She was 37 and had breast cancer. The other day I was standing in her hallway with her husband looking at photos of their family and their beautiful children and he started to cry, telling me he hadn’t done enough for his family. If you can build a level of trust in a short time then people feel comfortable with you, they want to open up, they want to communicate the pain they are feeling. That can be a very difficult part of the job, but it’s also an essential part. The saddest part of the job for me is when children lose their mum. I couldn’t do that part of the job; that’s where our amazing social workers and bereavement team come in. As a mother myself that puts your life into perspective – it makes you grateful for what you have and that in turn gives you strength to be there for your patients.
Putting Yourself In Their Shoes
What you’ll find with a lot of people working in palliative care is they always want to go the extra mile, because you really don’t want to have the thought of “we did too little too late” in the back of your mind. Sometimes that means trying to do something that you know will mean a lot to them, even if it might not work. If it comes off it can make all the difference to the patient. If it doesn’t you have to be able to step back and say, “we did our best” and that’s what matters.
It’s Okay To Break
I’ve been working at the Hospice for nine years and this year was the first time I’d really had any time off. I’d had COVID – unbeknownst to me – and was feeling very run down. At home I’ve got a family and they often come to me with problems, which of course during lockdown and homeschooling were all heightened. When I came back to work, with everything that was going on, it was difficult. I was struggling.
I had a patient who needed care at home but because of lockdown that was proving difficult. Her daughter is 24 and was looking after her almost by herself. One evening I could see the mother needed overnight care at home, so rather than just head home and think “I’ll sort it tomorrow” I stayed late and got them the care they needed when they needed it – thanks to the wonderful Hospice@Home team. And you know what? It lifted me in a way I cannot describe, because in that moment I knew I’d made a difference – I’d taken control of a situation. The patient passed away peacefully at home, where she wanted to be. That’s a positive outcome in what was already an incredibly difficult situation.
This is just one of many parts of what it takes to provide the best in class palliative care. The services our Hospice offer are all free to our patients. But we need donations to continue to provide it. If you have been touched or inspired by Gina’s story please click here to donate whatever you can, even a little can make a big difference. Thank you.