Written and shared by Michelle Langstone
My sister called me on a cool October morning and told me the doctor had advised it was time to take our Dad to hospice. I felt my skin ice over like a frost, and I drove from Rotorua to Auckland in frozen dream of dread. Like many people, just the word ‘hospice’ engendered fear in me.
In my head it was a place everyone went to die, where nothing good could happen, and no light could reach. We’d done a tour of our local hospice early on in the piece when Dad’s terminal cancer diagnosis was very fresh.
Everyone had been welcoming, but we were in a daze, so nothing felt real and no outcome requiring palliative care could really be imagined. Now it could.
As we wheeled dad through the generous doors of Totara Hospice the following morning, it was unmistakably a turning point in our lives.
Seventeen months with Dad, two operations, a round of radiation at the highest dose available, two additional stays in hospital, and here we were.
The hospice nestled on beautiful gardens full of trees and birds. Our sunny room had doors opening onto a wrap-around balcony, an ensuite, soft chairs, and little touches everywhere to help you feel comfortable.
We got Dad settled and I left the room, crouched in the hallway, and bawled my eyes out. A nurse came by, placed a box of tissues at my feet, and a hand on my shoulder briefly, and left me to it.
In New Zealand when we talk about palliative care, I think largely we imagine people dying in pale rooms far away from everyone. That’s what I thought, anyway.
We seem, at least at a glance, to know little about the services offered. As the End of Life Choice bill comes before our parliament, conversations both forceful and quiet circulate about what it means to die, what it might mean to choose to leave early via euthanasia, and what a death with ‘dignity’ means for the patient.
Hospice palliative care, which is the umbrella of care our family came under, generally cares for terminal patients who have stopped medical treatment, and are nearing the end of their life. It aims to help patients enjoy the time they have left, offering support both physical, emotional and spiritual, and neither hastens nor delays death.
Other forms of palliative care can assist patients at the time of diagnosis of a life-limiting illness, and throughout medical treatments as well as at the end.
I don’t come down firmly in one camp or the other regarding the bill, even after our positive experience at hospice, but I do feel we are not very good at dealing with death in Western culture. I think it’s something we are hopeful will happen when we aren’t looking, perhaps so we don’t have to feel too much pain.
This is of course a generalisation. However, over the time since Dad’s passing, as I have communicated his life and death, the resounding messages coming back to me are ones of fear and surprise. Fear of death, and of a bad death especially, and surprise at the beauty and laughter I had to share about our experience.
“As he slipped farther away from us, the hospice staff did everything they could to make him, and us comfortable.
I didn’t expect to laugh at hospice, but then again I also never thought we would emerge from there with Dad alive, and I was proven wrong. Many patients experience short stays at hospice, to rest and get stronger. It is a place of healing and empowerment as well as passing. There are day-stay patients, live-in patients, and there is even support in homes.
After three weeks of thorough wrap-around care, we brought Dad home, as was his wish, and cared for him there for another five weeks. There’s no way on earth that would have happened if it weren’t for the incredible team of doctors and nurses and physiotherapists and counsellors we had access to every single day of Dad’s stay, at no cost to us at all.
The standard of specialist care available at Totara Hospice was remarkable. Because it is end of life care, largely any medications are given orally, and the treatments are there to manage symptoms and assist in providing the best level of comfort possible. Swift, kind, and efficient, I don’t think there was a moment that felt unsupported. A press of a buzzer produced help in less than 30 seconds, and equally, letting the nurses know we needed some quiet meant just that - absolute quiet.
It was a very personal experience, and we came to know our nurses and doctors well, something we had seldom experienced in a hospital situation - and we had been in many of them with Dad. There were nurses my Dad made genuine friendships with, who he couldn’t wait to see, with their running jokes to lighten the indignities of bodily functions, and impromptu waltzes when they’d lift and move him around.
There were doctors he would shake hands with and say “Thank you so much for helping me, you’re just so brilliant, you really are.” They were so respectful of him, no matter what mood they found him in, no matter what bodily state. In every moment of care they honoured him, and in doing so they honoured our family. Nobody pussy-footed around the seriousness of the situation, and because of that transparency, and because no one baulked at our feelings in all their array, life at hospice felt normal. It became our safe place, and we felt protected.
At one stage, two rooms along from us, a friend of ours was farewelling his mother-in-law. How strange to stand in the hall with his wife and kids, talking and hugging. How odd to sit with dad and sense them mirroring our journey only metres away.
We saw so many families come and go. A Samoan family farewelled their father, and the hallways were filled with extended family all though the day and night and it felt like comfort. There was so much life and energy around, and it lifted us. We felt connected, and sometimes we even felt strong. I had never imagined that was something palliative care could bring us.
The staff at Totara Hospice let us bring Dad’s cat to visit him. I’ll never forget that, because it was the most hilarious day in the middle of such a difficult time. Our cat Bailey, true to form, just sat on Dad like a very hairy cushion, and dad loved it, and the nurses who came in and out loved it. It felt absurdly normal to have our cat in that light-filled room with Dad; it made us feel better, and it gave dad something to anchor to - an imprint of the home he missed.
"They remain the most remarkable people I’ve ever met - thoughtful, wryly funny, serious and playful."
The time we had at home after that first stay was precious, but it is the last five days of dad’s life that stay with me as some of the most beautiful, and profoundly moving.
Dad was transferred to hospice from Middlemore, where he had made the choice to stop any further medical intervention. We were greeted with a sensitivity that defies any words. Dad was never alone. We stayed with him - piling ourselves on spare beds and lay-z-boys, and taking over his bathroom with our toiletries just as if we were on holiday at a bach.
We made food in the kitchen, poured wine in the evenings, played music, and watched TV. It’s unimaginable how deeply normal we felt, and I think that’s a gift of hospice care - to be given the gift of your own familiar routines, even as everything is changing, is a comfort.
One night I emerged from our room to find my favourite nurses in a huddle at the station. They were watching a video on a phone, and giggled when they saw me. They were learning the choreography to Beyonce’s ,’Single Ladies’, and recording their efforts to see what needed work. You better believe I laughed. You better believe I watched that video and gave feedback. That lightness made my day, and I went back to dad grinning.
As he slipped farther away from us, the hospice staff did everything they could to make him, and us comfortable. It was a difficult end for dad, and nobody hid that from us.
There was practical advice, specific information and instructions that really helped. The doctors and nurses met with us often, and we could ask questions or speak our fears, and dad’s care plans would be adjusted swiftly. There was a counsellor always on hand. She walked me and my brother through the garden on what became our last day, because she could see we were beside ourselves. She reminded us to breathe. We breathed for our Dad, whose lungs were fighting so hard to keep him with us. We held him as he left us, in complete privacy, and it was an end that brought release with it.
I opened the door and stepped out of that room and our nurse was standing in the station down the hall. She met my gaze and I nodded, and she nodded to me, and it was done.
It wasn’t over though. Our favourite doctor came to fulfil the official things required by law, and did the most extraordinary thing I’ve ever seen. He stood beside dad’s body and spoke to him, and asked permission to check him over. It held more dignity in it than anything I could have imagined; respectful and honouring to the last. We got to wash Dad’s body, and say goodbye for as long as we liked. In the foyer a candle was lit for him that remained burning until his body was taken away.
Dignity, empathy and compassion - that is what I now associate with hospice, and with palliative care. I recognise this is not the experience for everyone, but it was for my family. It afforded my Dad respectful care and decency when he was at his most vulnerable. It allowed our family to experience the fullness of his life and passing with support. It meant when it came time to let him go we were as ready as we could be, and we processed the loss of him with what I believe was a deep recognition and acceptance.
These qualities are in our inherent nature to give and to receive, but are so easily forgotten in this bewildering race that we call living and dying.