AT a recent palliative care meeting discussing morbidity and mortality, we realised that for many of our patients there is simply not enough room in the “other significant conditions” section of the death certificate to list all their diseases.
This observation fed into my thoughts about the 2015 Intergenerational Report, released with great fanfare in March this year.
When I first read the report, I thought it was just wrong. There was almost no mention of the individual and community burden of disease, the decline of health and wellbeing in old age, or discussion of how, in spite of living longer, we still need a significant amount of care before and as we die.
When I asked colleagues, I could not find many who thought that the next 50 years would see us living longer and healthier lives. We see something very different.
Then, in early June, the Global Burden of Disease Study 2013 was released. One of its components — an analysis of years lived with disability — offers an alternative assessment to that of the Intergenerational Report that validates our experience.
A comment on the study summed up the main conclusions: “People are living longer, but with more disease and disability: an unprecedented transition from a world with communicable diseases to one with chronic disease and disability, with implications for welfare of people worldwide. Yet health systems and economies are not prepared for this transition. Instead, asymmetry between health-system responses and the growing needs is worsening, as are inequalities.”
We are living out our last years with a growing burden of disability due to the adverse consequences of both the diseases that we haven’t died from and the treatments that have postponed our dying.
The research is clear. I suggest you read both reports and consider which one better matches our clinical experience.
So why is it important to understand what the future holds?
First, it is about how we, as doctors, are able to deliver appropriate health care in our community.
Recently I had a call from a young colleague requesting advice on the management of a patient with multiple comorbidities. Her difficulty was that there was no solution to the patient’s particular problem that did not carry a significant risk of exacerbating one or other of the rest of his multiple ailments. And whatever she did, he would die soon.
She was greatly relieved when I said that for many of our frail and heavily treated patients, there is no medical solution, even in the 21st century, to their problems.
“It is a great relief to hear a colleague express what I have been feeling”, she said. She had been disempowered by the disparity between what she could do and what she thought she was expected to do.
Second, it is vitally important for everyone in the community to understand the limits of technology to prolong a life with quality and independence.
It is important as patients that we don’t allow ourselves to be trapped by illness because of new technology, with no way out and facing a life of prolonged misery — one that we might have avoided had we been better informed.
It is important as a community to recognise the emotional and fiscal burden, and the spiritual distress, caused by harmful, unwanted and fruitless treatment that does not buy anything other than time.
So what can we do?
As individuals, we can undertake advance care planning in anticipation of the choices that might arise in the course of our inevitable future illnesses.
We should expect health care workers to disclose fully how we might come to live out our lives during, and in the aftermath of, the life-prolonging treatments we are offered.
As a community, we can face up to what health care workers are dealing with right now. We can acknowledge the realities of the accumulating burden of diseases and their treatments, and the limits of technology to sustain a life of quality.
This would allow us to redefine the hopes our community has for its health care services and focus our efforts and resources on activities that enhance the experience at the end of our finite lives.
Associate Professor Will Cairns is Director of Palliative Care in Townsville Hospital and author of the ebook Death rules — how death shapes life on earth, and what it means for us.