In healthcare it is important to set clear boundaries in order to care for yourself and your patients in a sustainable fashion. In the practice of palliative care, boundary setting is even more important, as the therapeutic relationship can be very intense and intimate at times. We have to keep in mind that this relationship will likely end soon, with the death of our patient. It can be a difficult balancing act; using your humanity to make important connections with another human being; while at the same time keeping professional distance to protect the both of you.
That being said, it is inevitable that there will be some cases which will hit you harder than others. When a deeper connection has been made, you will feel the loss and grief much more strongly. Informal reflection with your team members and professional supervision have an important role to play in keeping us palliative care providers safe to continue doing the important job that we have to do. We need to remind ourselves that this is a job that not everyone in healthcare can handle. That those of us who chose to work in palliative care, owe it to ourselves and our patients to look after ourselves. We are a precious resource and if we do not take care of ourselves, we will deny our patients and their families the difference that we can make in their lives, and deaths.
After almost ten years of working exclusively in full-time palliative care practice I would like to share a case that reminded me of just how human I am, and how much value I obtain from professional supervision and from sharing with my team members.
It is with sadness that I report the death of a patient that we had looked after for six years, since 2011.
This is very unusual in the hospice/palliative care setting but this was a lady who was always different and stood out from the crowd.
A nurse by training, an organiser by nature, a leader by example, she worked in various settings and made a difference in many lives.
She was the person you would go to if you needed something, or someone, sorted out. Someone who believed in always doing the right thing.
A strong woman who was not afraid to stand up, stand out and who would speak her mind, which went against many cultural norms. A strong assertive lady who was well ahead of her times.
A relentless health promoter who touched many lives both in her workplaces and the community of South Auckland.
Because of her initial reluctance to engage, her first inpatient admission was in 2013, and it had taken many months of convincing before she ‘gave us a go.’Once she had experienced what we had to offer she became one of the strongest promoters for hospice/palliative care, often urging her many friends and family to come and visit her when she came in for her regular admissions every six weeks.
The other year she had advocated strongly for palliative care when she was being interviewed by TV3. They edited out the part when she forthrightly stated, “John Key (the then NZ Prime Minister) needs to stop wasting time and $23 million with that flag stuff, it would be better spent on palliative care!”
Alongside her was her ever faithful, and dutiful sister who always insisted on providing all of the cares during ‘their’ many admissions; challenging established hospice cultural norms. We asked, “ How can you have a break if you are still doing all the work of caring?” “We both have a break from all the many, many visitors that usually come to see us at home,” was the reply.
Over the next four years the entire clinical team had the pleasure of getting to know these two lovely ladies, and also their family.
We were witness to the quiet pride that our patient showed as her daughter completed her nursing training, and started working in the local hospital. Not many words needed to be said, the satisfied smile in her eyes said it all.
Incrementally at almost glacial speeds, the expected deterioration occurred, but of course, it was much slower than most patients would experience. Most people with Motor Neurone Disease only have a median lifespan of 18 months after diagnosis, and I am writing this article roughly eight years after diagnosis. We believe that a lot of this extra time was a direct result of the selfless loving care provided by her sister and their family.
We were very worried that death was imminent about a year ago when a more marked deterioration occurred. Important conversations were had, including the finalisation of an advance care plan – ACP. Our patient knew exactly what she was facing and did not shy away from it. The ACP allowed her to take some control over what would or wouldn’t happen to her during her final illness. “We’ll see what happens,” was what she said.
What happened surprised us all, our patient improved and we had the pleasure of her regular company for another year. We heard of the great excitement that she had felt with the addition of a deck to their house which meant that she could spend time outside with her family. Some simple planks of wood allowed her to participate in many lovely family gatherings, while bathed in warm sunshine. She absolutely loved it and praised her daughter for actioning a brilliant idea which brought great pleasure to them all.
She continued to pack a lot into what would be her final year; a lovely Christmas celebration with her family: the visit of her baby grandson from Australia; she continued to pass on her words of wisdom to us all; she was always keen to help us teach students and other visitors to our inpatient unit.
Things were very different when she was admitted the other day, her breathing had deteriorated markedly, and she was distressed to the point of asking for medication, which was something that she had never done before. She looked exhausted after not being able to sleep the previous nights. Her daughter and sister were beyond tired, but had to stay strong to take tearful phone calls from more distant family members.
As I held her hand and looked into her eyes, I said, “We’re going to get you through this, and we’re going to get your family through this too. We will look after them as well.” “I’m going to start small doses of medication to calm down your breathing, and your distress. We’re going to make you feel more comfortable.” Through sheer force of will she was only able to say a few words to me with great difficulty.
I went back a few hours later to check on the three of them, her sister was the only one awake, our patient and her daughter were sleeping peacefully. Her sister had been ‘holding on strong’ for all of them, and only then could she allow herself to shed some tears. “She told me last night that the angels are coming to take her…” I said to her, “Yes I think they are, she could die at anytime from now. Are other family members on the way?” “Yes, our sisters are coming from overseas, many people will want to see her.”
The next two days there were countless visitors, as further deteriorations occurred. She no longer had the breath to talk but she was still fully aware and able to nod or shake her head. Luckily our ‘hospice flat’ was available and allowed her family to stay on our hospice’s site.
On the last morning I reviewed her management plan and made some small changes to make her more comfortable. Then I thanked her for all she had done for the South Auckland Community, in her nursing and other community work. I thanked her for continuing her health promotion work even when she had become bed-bound. I thanked her for ‘standing up’ for palliative care, even over the years that she could no longer weight-bear. I personally thanked her for everything that she had taught me over the years. “Thank you my dear. We’re going to get you through this, and we will get your family through this.” She nodded and with great effort she opened her eyes and looked into mine.
I took a deep breath as I walked down the corridor, thinking that this was the last time I would see her alive.
…Amazing Grace…how sweet the sound…