Today I spoke to palliative care workers from across Victoria and this is the story I told.
As palliative care workers – and associated professionals, I’m sure that everyone wants to tell you their death and dying stories. So today I’m going to tell you mine and hopefully illustrate the role of health literacy in my family’s confrontation with the process of dying.
A decade ago my Dad was diagnosed with mesothelioma and died nine months later, he was 64. I recall that I often, quite accidently, referred to his palliative care worker as “the midwife”. I would ask mum, what time is the midwife coming, or dad, what did the midwife say? I didn’t think about it too much at the time, but in retrospect it occurs to me that midwives and palliative care professionals play very similar roles, guiding people through the big transitions – through pregnancy and birth on the one hand and death and dying on the other. One of the big differences between these two transitions, apart from the obvious - the potential joy inspired by the one event and the terrible sadness associated with the other - is the openness of communication and the flow of information.
There is so much information for women who are pregnant. There is a general hubbub of talk and chatter and gossip; there are endless books and brochures and web sites. There are telephone apps that tell you what your baby looks like week by week; there are bulletin boards, blogs and bibles – telling you how to manage from one stage to the next. Indeed, it’s probably fair to say that pregnant women - particularly white, middle class, Australian pregnant women - are subject information pollution. A plethora of opinion, comments, judgements and urban myth – from every which way; health professionals, family, friends and perfect strangers.
Dying on the other hand is the elephant in the room – in dying there is a silence of information and in that silence there often breeds great confusion, misunderstanding and misery. I am not suggesting that the information isn’t available, or that the books and brochures don’t exist, but it doesn’t flow with the same ease. I’m suggesting that the barriers to information that are everywhere across health and healthcare – barriers brought about by the many social determinants I mentioned earlier - are even more impenetrable when you add the reverence and fear and the cultural silence engendered by the process of dying.
My family is a typically dysfunctional Irish-Catholic brood of seven and each of us had our own strong reaction, opinion and understanding of my Dad’s condition and what it meant. My mother told us that dad was diagnosed with something called “miso something-or-other theloma” and it was lung cancer but it was only in his right shoulder. At one point she even threw in that it usually only affects tall people. We had no idea he had worked with asbestos, he did and he had also wondered over the years if it would eventually catch up with him.
Mum told us he would be able to live with “his condition” for years and that treating it would just make it spread and grow. The reality of course was that his prognosis was poor and treatment was just plain useless. My mum simply interpreted everything the doctors told them according to how she wanted things to be and God help us if we were to question it or suggest otherwise.
Dad said nothing. I think he knew he didn’t have long and was resigned to just quietly coming to terms with it and managing his death as best as he possible could. Deep down, Mum probably knew the reality too, but she nevertheless fully expected dad to continue unaffected, and despite the increasing doses of morphine, she would get frustrated because he forgot to pay bills or the put the bins out or water the garden.
Then there were the siblings; one brother tried to pack Dad off to Perth to participate in trials for a new treatment, a sister decided that the medical profession were lying to us and contacted them all to tell them so, another brother thought he could be treated with breathing exercises and another wanted to delay introducing oxygen because that was “giving in to the disease”. All of us fought over what was best at any given time. We wanted Dad to die at home but he (unsurprisingly) wanted to go to hospital. In his final hours, in a tiny hospital in South Australia, while my brothers drank themselves silly in the car park – Dad was still trying to manage his dying in his own way. His level of discomfort was so great that we asked the staff to increase his morphine but Dad, in his delirious state, said no, no more because he didn’t want his death to be . . . induced.
There was a whole other level of complexity because Dad was entitled to compensation but his case had to be heard while he was still alive. He was determined to do everything he could to make sure that Mum would be paid out before he died and so there were legal documents piled on top of medical forms and prescriptions, bills, appointment slips and instructions for a whole range of medical paraphernalia. We were all learning a whole new language that we had to master in a short time.
I thought Dad’s “midwife” was wonderful given what she had to deal with but nevertheless there are things that may have made our journey and therefore Dad’s journey a little easier. While grief was the overriding factor impacting our ability to function normally, each of us also brought different understandings within the different health literacy domains – and of course none of us was really willing to listen to the other and so really, it just got ugly.
What would have helped us? At the time I couldn't have told you, but in retrospect and with the benefit of hindsight and ten years of working in consumer health information, and the my recent whirlwind tour of the world this is what I can tell you:
- · Good, accessible, timely information about the disease delivered by a health professional to all of us. Information on what to expect, the prognosis, what the current treatments are and when treatment is actually useful. Information about the progression of the disease and how the dying is managed, when oxygen is introduced, the affects of morphine and how that can be managed etc., etc.
- · Good quality, interactive information online – maybe even the capacity to talk with other sufferers or families and facilitated by health professionals. My dad spent a lot of time on the internet searching for information and getting frustrated (a decade ago remember)
- · Information for all of us, family, partners, children and friends on how to support the dying and how to talk about dying, how to acknowledge the elephant in the room and its impact on everyone.
- · Information that is bite sized, accessible, easy to manage, with short, active sentences and limited medical language that can be read and shared with others. Information that refers to and directs readers to the evidence; to more complex information for those who need to go there.
- · Information about what is available in the community for the patient, for the family, as well as easy, accessible pathways to support and care.
- · Structured, inclusive, support sessions where all of the above takes place.