Palliative care and Radiohead: Lessons from the last days of Mum

The harrowing process of ensuring the best possible death for Mum has taught me a few things. Small things matter, as does the standard of available palliative care.

 

 

It was hard to know how long it’d take after my Mum’s death for the “right words” to come, and in fact, what it was that I would need to write about the experience.

From the 27th of April 2017, the day of Mum’s car accident and cancer diagnosis, a buffet of mandatory, totally unappealing tasks required addressing one after the other, and they hit us like waves of excruciating nausea. The serrated edge of the graft was sharpened freshly each day by knowing that everything my brothers and I were doing was administration tasks that could only end in the death of one of the most important people in our lives, so the motivation to do these things came from a place of the purest love and deepest intrinsic motivation – we were looking after Mum and taking care of her affairs because we owed it to her for giving us life, because she had been such a great mother, and we wanted her to have as good a death as possible .

The day after Mum was admitted to hospital, we were told she had hours to live. After a few days of watching her in the twilight of unconsciousness, she began to stir, and the doctors widened those goalposts to anywhere up to a couple of months. At the time of Mum’s car accident, she had been in the process of receiving a cancer diagnosis, with the primary suspected to be in her lungs, indicated by shadows in a scan. On the day of her accident, we found out that the same preliminary MRI had also revealed a golf-ball sized brain tumour, a tumour that the radiologists had neglected to report, and that her lung specialist had also somehow missed. The second set of scans she received on admission to the hospital after her accident had revealed that in actuality, the cancer was present in her brain, hips and lungs. In the emergency room, emergency physician queried as to why she’d been driving with a brain tumour on board. Mum broke down; she hadn’t been told about it and she was terrified that we wouldn’t believe her, however there was no doubt in any of our minds that her narrative was true. She had told me earlier in the week that she felt like her body was beyond her own control – like it was being taken over by something – and I remember saying that the feeling was probably related to the anxiety of being in limbo about the cancer diagnosis. Oh, how I wish I’d taken her straight to hospital in that instant, instead of trying to calm her down. The day of her accident was the last time she was able to properly converse with us.

 

We pushed those feelings aside. We had to. People around us would look on with quiet amazement and comment on how strong we were being – I would thank them graciously, then turn away with a bitter sneer and through clenched teeth, would wonder what other fucking choice do we have?

 

Whilst there is no way of knowing for sure, we suspect that the stroke she experienced on the day following the car accident was a result of the trauma from it. Whilst radiation therapy or chemotherapy (which Mum would never have had) might have treated the cancers and extended her life by a small amount, the stroke took any treatment options off the table. The stroke also left Mum hemiplegic and mostly non-verbal. The anger, sadness and frustration we felt as a result of this absolute clusterfuck of a diagnostic procedure on made it difficult to breathe and remain sane, let alone provide support, compassion and care for our dying mother.

Somehow, we pushed those feelings aside. We had to. People around us would look on with quiet amazement and comment on how strong we were being – I would thank them graciously, then turn away with a bitter sneer and through clenched teeth, would mutter “what other fucking choice do we have?”. My brothers and I were in furious agreement that the people responsible would be held accountable in the fullness of time, but for the time being, we needed to put 100% focus into ensuring that our Mother had the best possible palliative care, leading to the best death possible under incredibly difficult circumstances.

The Australian policy and legislative context that would support good death is largely in a stalemate situation. On one hand, any attempts to legalise euthanasia by State and Territory Governments has been thwarted or refused consideration, and on the other, the time, resources and energy that are put into palliative and hospice care ridiculously lacking. For example, on the Gold Coast where we live, which is the sixth largest city in Australia, there is one charity funded eight-bed hospice facility and one 16 bed public palliative care facility. The rest of end of life care is left up to family members to do at home with varying levels of support that are dependent on funds and access to services, or within nursing home facilities that have patchy capacity to be able to deliver sufficient care due to resourcing limitations such as low staffing levels and the necessary equipment to be able to deliver specialised care.

If the policy decisions that affect people’s capacity to be able to self-determine the time at which they die are going to be continually stymied by a covertly theocratic legislative context that clings hopelessly to rigid deontological ethics under the guise of respecting the sanctity of life, it’s about time we get this poorly resourced situation sorted out. It’s going to take a special kind of mindfulness around death and a widespread commitment to acknowledging the end of life as a phase of life, not just an abrupt ending.

 

We are all a hair’s breadth away catastrophic events and ostensibly from death. We manage to ignore it most of the time, understandably caught up in the ebb and flow of the daily grind. We need to think more about how we’d like to die – it’s a phase of life, not just the ending to it.

 

Mum and I have always been stalwart advocates of euthanasia. Since her death, I’ve wondered if our support of it is in any way related to the fact that more or less constant suicidal ideation was a common ground we shared. However, a couple of odd and unexpected things happened to my mindset during the ten weeks between Mum’s accident and her death. Firstly, all of my own suicidal ideation discontinued, for the first time, I can consciously remember. Secondly, I developed a profound appreciation for the privilege of being able to provide good palliative care, and to be an active member of someone’s dying process. It’s the little things that counted. After her stroke, Mum gained some capacity to speak again, however, words were often a little mixed up. Our favourites include “zizmosphere”, which members of my family and beyond now use to describe any situation that causes existential unrest and anxiety, e.g. when one accidentally reveals a secret belonging to someone else in front of others; over-disclosure of personal information too early on in a relationship; lumpy custard; when the petrol light comes on in your car during a traffic jam; when there’s insufficient peanut butter left in the jar for both pieces of toast. These are all examples of zizmospheres of the highest order. Just a few of the highlights of caring for Mum included providing her with personal care, playing pass the parcel with the family and letting her cheat (after all, it was the last time she’d ever get the opportunity to win), listening to Radiohead, sharing tears of joy and pain with her, and letting her know that it was okay to be scared of dying because none of us knew what she was in for, and reassuring her that we were all there to help her get over the line. Mum’s intellectual commitment to euthanasia was complicated by coming face to face with the actuality of death. She was in horrendous pain and wanted that to end, and was concurrently terrified. Words can’t do justice to how painful that was to watch, however, we tend to learn the most when we are in pain.

I now understand the philosophy behind what’s required in good palliative care. Respecting dignity and individuality, practicing compassion, discretion, empathy, humour and grace, pain and medication management, being culturally humble and non-assuming, supporting self-determination wherever possible, providing advocacy, facilitating empowerment and providing choice are a few of the main tenets of what’s required in such a situation, and we were lucky enough to stumble upon a nursing home full of carers who did all of these things. They taught me so much about how awesome palliative care can be when it’s done right, when it’s done by people who truly and deeply care about what they are doing not because it’s always pleasant or rewarding, but because facilitating good end of life care is the right thing to do.

We are all a hair’s breadth away catastrophic events and ostensibly from death. We manage to ignore it most of the time, understandably caught up in the ebb and flow of the daily grind. We need to think more about how we’d like to die – it’s a phase of life, not just the ending to it. Burgeoning from individual ideas, this mindset needs to extend and better shape policy, legislation and systems so that people can be supported to have the best death that is available to them.

 

 

 

 

 

 

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