Working in palliative care you would think that we all live our lives without regrets. We all live each day to the fullest and try to make the most of all our relationships. Living as if it’s your last day. But, no, we don’t. It’s not happening to us, even though we know it could happen to any of us at any time.
Is it because we become desensitized to all the suffering that we witness? In people who are burnt out or suffering from compassion fatigue they may be less able to empathize with the people they are caring for. You can’t allow yourself to become enmeshed in each case you deal with. Too strong a connection, too strong an identification and each death will be felt tragically. You can only handle so many tragic events, and certainly not on a daily basis.
The opposite can occur, in which clinicians become too detached from their patients. They are unable to connect with a fellow human being who suffers. Patients feel like they are being looked after by a robot. Would more consistent care be delivered by robotic helpers? What is it that is so special about human clinicians? Could a robot ever be a replacement?
Hospice began as a radical social movement for the purpose of caring for dying cancer patients. The philosophy has spread to many areas of the world and hospice has become institutionalised in many countries. Hospice has become part of mainstream healthcare with all the benefits and drawbacks that come with it. It has come at a cost. Hospices seem to have lost their mojo, their drive to be agents of change. They have become maintainers of not the status quo but of the stasis quo. We don’t want to change at all, some staff and volunteers may in fact wish for the good old days. When the services were small, the patient selection criteria were restricted, and life was simpler.
Has the hospice movement ground to a halt? Does the philosophy behind it need to be reassessed and redesigned? Are we brave enough to accept that we are not the experts on everything? Our populations are ageing and there will be more elderly people around than ever before. There will be more people with dementia and end-stage frailty who will need palliative care input. A huge amount of need requires our urgent attention. Our care will need to be truly patient-centric, even if the patients are unable to thank you for the care provided. We need to be reminded that we work in healthcare to help people. Our jobs exist because of patients. We need to remember it is not the other way around.
What can we do to resuscitate the hospice movement? Fresh ideas, reaching out to other groups and asking the consumers what they want. Co-design of our services needs to be done more than tokenistically. It’s time to come down off our pedestals and mix with the hoi polloi, time to get in touch with reality. Welcome back to the rest of the world. Time to wake up from our dreams and ground ourselves in practicality. We are not that special. What can one person do? Open your mind to new ideas. Listen to what your patients actually want. Remind yourself what a privilege it is to be involved in their lives. It’s not about you, it’s about them. It’s their life. What’s next?
“I’m just checking in with you. How are you today?”
“I’m too tired to fight today.”
“Me too, you really made me work hard yesterday.”
“I would really like a massage. Healthcare has under-utilised the benefits of therapeutic massage.”
“I’d agree with that. It is one of the alternative therapies that has been proven to make people feel better. A lot of the Pasifika cultures use massage as part of their healthcare systems.”
Nod.
“Us humans require physical contact. We don’t hug each other enough.”
His long arms tried to stretch outwards, but they could only move centimetres towards me due to weakness.
My arms went around what felt like a skeleton’s back. Sarcopenia is the medical term for the muscle wasting I felt.
A gentle embrace was shared. He was too weak to hug me tighter. I didn’t want to hurt him.
Followed by a firm handshake, our left hands surrounding each others’ right hands. All four hands shaking together.
The smiles in our eyes met each other. Retinae looked directly at retinae. A human connection was maintained but it was destined to be disconnected soon.
Our kindred bedside manner DNA started to unwind. One strand would come to an end soon, whilst the other would continue on.
He thanked me for the care provided.
I thanked him for his time and for the fun memories of our playing and joking together.
We shared a smile before we waved ‘see you later’ to each other.
I heard the loud and proud singing from the carpark. The vibrant and powerful voices of the Gospel Choir required no amplification. Their harmonies stirred even the singers to tears, let alone their audience.
We were all gathered to celebrate a life and to say goodbye. In my 23 years of medical practice, I had previously been to only one patient’s funeral. This was number two.
The husband had requested that we all wore black. I wore a dark suit, a white shirt and a tie with yellow smiley emojis. Partially hidden under dark coats were yellow and other colourful dresses. Vivid scarves provided obvious contrast to otherwise fully black outfits. Yellow earrings dangled from the ear lobes of some of the ladies. The young men wore black, apart from their highly decorated sneakers.
We all stood up and the room quietened as the pallbearers carried the gleaming yellow coffin with loving care.
I looked through the window at the front of the room and I noticed a small yellow feathered bird frolicking in the bubbling waters of the spherical fountain.
It was lovely to hear about our patient’s rich life from friends, workmates and family members. In Palliative Care/Hospice we only meet people when they are very unwell. We often don’t know what they were like before their illness changed every thing.
I had been asked to talk on behalf of our hospice. I talked about the strongest patient I had ever met in my fifteen years of palliative care. Someone who had surprised me with her resilience. She made me negotiate every change in medication over the past six months. I talked about when I thought she was about to fall asleep for the last time and then hours later she went out to the shopping mall.
She had wanted to buy the piece of furniture for her living room for some years, but she had been too busy. Working, caring for her family, entertaining friends, and living a full life. Then the illness and its treatments had taken over her calendar appointments. In her last weeks, she had filled in the last remaining space in her living room, the seat was upholstered, of course, in yellow.
Education was always so important, she didn’t want the kids to miss out on school. As many children were present for her funeral, a science lesson was shared about Mitochondria.
I talked about when she saw my yellow scrubs for the first time. She smiled and laughed before changing her outfit. She had asked her friend to take a photo of us in our yellow outfits. Both of us also wore matching socks.
In her final weeks, I had worn my yellow scrubs more often. Each day I thought it might be the last time she would see them. I told her again that whenever I wear my yellow scrubs in the future I would think of her.
The photos always get me. The montage accompanied by a heartbreaking song, showed happier and much healthier times. A younger couple with tiny toddlers in photos taken from various holiday trips in exotic locations. The pictures of the beautiful family, with the rest of their lives together to look forward to, deepened the ache of the afternoon gathering.
We all stood up as the six men took their places at the side of the sacred yellow vessel. They took their sombre steps out to the waiting hearse. We followed them outside and were offered white petals with which to say our final goodbyes.
Yellow balloons were released by her tuxedo and formal dress adorned children. Goodbye Mummy.
The sturdy videographer raised his arms in order to capture the right shot. The too-pale skin of his ample abdomen blinded us previously innocent bystanders. Captain Ahab would’ve been driven into a frenzy. We closed our eyes but a dark-coloured island continent was burned into our retinae. Thankfully we had not glimpsed Tasmania.
She would not have approved of his shirt not being tucked in and would’ve had a few choice words to share with him, in a polite but forthright manner.
We waved goodbye as the hearse rounded the corner.
One of the impacts of COVID I have noticed in the past two years is the increase in late diagnoses and subsequent late referrals to palliative care. Access to medical care shifted towards virtual means around the world and people may have put off visits to the doctor as for a while it was not easy to be seen in person.
There have been many late and in some cases too late referrals to palliative care. This creates a scramble situation as our services try to respond to the urgent need. Often in the last two years, we have received patients transferred for end-of-life care who may only have been diagnosed mere weeks before death.
We do the best we can to help them but it can feel rushed. A connection needs to be made to help the patient and their family. Rapport needs to be built and in an ideal world, we would like to have more time to build a therapeutic relationship before the patient becomes too unwell to engage with us fully. We don’t always have this luxury and have to make the connection faster. This is not a smooth process, the stakes are higher, emotions are rawer, and stress levels increased.
A short therapeutic relationship also means disconnection needs to occur in a faster manner as well. We are involved in some cases only for short days or hours in some cases. The ability to connect and disconnect without losing your humanity is an art to be developed. Strong boundary perception is important otherwise we couldn’t continue doing this job day in and day out. A delicate balance is required between connection and disconnection. Attachment and detachment. Involvement but not enmeshment. Empathy and compassion without entanglement. Human commonality and professionalism. We try our best to do enough.
palliverse.com 