The largest health and disability system reforms for a generation will start in Aotearoa New Zealand (ANZ) starting in July of this year. One of the major changes is the creation of an independent Māori Health Authority. Its important task is to address the health inequities and disparities which lead to Māori people dying seven years earlier than other residents of ANZ. It has taken us 182 years to reach this sorrowful state and a real change of mindset is required if anything is to change at all. It can feel almost too big. What can I do to make things better? What difference can I make as an individual when the system has been designed to continue producing the same results? Nothing changes if nothing changes.
During a visit to one of the local marae/meeting place years ago my hospice staff were asked, “What do you have at your hospice that would make Māori feel welcome?” We struggled to answer the question. “Well here is your wero/challenge. How can you make us feel more welcome? Show us some evidence, don’t just talk.”
Thus began our journey of discovery, we needed to be educated. Bi-cultural competency training was arranged for all staff members throughout all levels of our organisation. For both clinical and non-clinical staff. We learnt about the adverse effects of colonisation, and the poison of institutional racism. We are encouraging each other to use more Te Reo Māori words in day to day hospice life. Bilingual signage has been placed as we seek a more open cultural direction.
We are singing Māori waiata/songs together every Wednesday morning. Today we were graced by a special impromptu guest. One of our tangata whenua/Māori inpatients walked into the room where we were singing. She had a big smile on her face as she joined her voice with ours. It was a privilege to be able to sing alongside her for those few minutes.
We have only just begun our journey of discovery but it is making a difference already. Another tangata whenua patient we cared for recently told me, “I started laughing as soon as I walked in. The wairua/spirit of your place felt good. I feel comfortable here. I trust you guys.”
It’s a small step in the right direction. Are you going to join us on the hīkoi/walk?
I arrived around the same time as the Eat My Lunch delivery arrived. This was a local social enterprise which had been set up and the concept was that if you bought a lunch, the company would provide a lunch to a student in need. The company had delivered some school lunches to be distributed to the students. From one of the other network attendees I learnt that the school also provided breakfast for the kids as well as lunch. The lady said that she helped with the breakfast serving at least once a week. She admitted to initially being against the idea, that she had believed that children’s nutrition was supposed to be under the remit of their parents. Over time she came to the realisation that due to personal circumstances this was not always possible, and that providing children with one or two meals a day really enhanced their health, and their learning ability. Since then she happily reported to duty each week, and sometimes even filled in shifts for other people.
A family had come back recently from the Islands, the husband was unwell with metastatic cancer. The teacher asked if the patient was under hospice. I thought that service was only for Palagi – The foreigner – the white people. Despite us having been the hospice for the local area for the past 35+ years local people still did not know that we were available to help our local community members regardless of who they are. A gap that we still haven’t been able to bridge despite many years of trying to connect. What we had done over the past three decades just wasn’t working. We need to try something different. The same old, same old just doesn’t cut it any more. What else can we do to make the connection? That we are here for people just like you. We have been trying to recruit to reflect our local demographic. For our staff to look like our community, and we are hiring for inclusion to encourage diversity of thought at all levels of our organisation. People like us look after people like you, we are one and the same.
The family had lost their father and husband due to a brutal act of violence at the local train station. His life was cruelly stolen from them, and the grief was too much for them to handle. They were lost, set adrift in a cruel sea of grief, with no land in sight, no hope of rescue. Every week they would visit the site of his death, the mother and the children, would weep and could not move on with their lives. This important local community hub held onto their agony with an iron grip. A local amenity that could not be avoided, became not just a place to catch a bus or a train, but a deva-station. Transporting them to a painful past, a tormented present and an uncertain future.
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.