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The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
Chronic breathlessness is highly prevalent across the community. One in 100 Australians have significant impairment of their activities of daily living and one in 300 people are housebound because of breathlessness.
Chronic breathlessness is systematically under-recognised by health professionals. When taking a history about breathlessness, the question ‘are you breathless?’ is not going to elicit the problem nor its magnitude. ‘What do you have to avoid in order to minimise breathlessness?’ is a far more important question, or this can also be phrased as ‘what have you given up in order not to be breathless?’ With these questions, we start to get a picture of the net impact of breathlessness on individual patients.
One of the most troubling aspects of caring for people at the end of life is caring for those left behind. The problem is simple – everyone focusses on the ill person while curative treatment is attempted. Everyone knows the supporting spouse, child, or friend is there, but the person with the illness is the patient, not the carer. However, being a carer is a risky business. Most carers have little health knowledge or background. The fear of doing the wrong thing and making the ill person worse is ever present. They do not know what is going to happen, and if things go wrong, whom to call and what to do. Studies of carers and patients at the end of life repeatedly show that the carers are more anxious and depressed than the patients themselves.
Roughly two years ago I had the good fortune of meeting a group of like-minded clinicians and academics. The interaction I have had with them has been incredibly beneficial to both my clinical and professional practice. However, we are scattered across Australia and New Zealand, and therefore we rarely meet in person and essentially only connect with each other online. I subsequently learned that the term for our group is a Virtual Community of Practice (vCoP). vCoP are becoming increasingly common and often arise from clinician connections through websites and social media platforms like Facebook and Twitter. vCoP can have a range of different purposes, including sharing of research or new clinical ideas, creating a platform for inter-professional collaboration, operating as an educational resource, working as a mechanism for advocacy, and providing a means to connect clinicians with the broader community.
It seems to me, as time goes by, that medicine becomes more and more fragmented. We don’t seem to consider our patients as a whole person anymore. Instead, our patients become disease entities, and the clinical approach is to treat the disease and to “tick the box” with their treatment. Has the asthma plan been done? Have we completed the diabetes cycle of care? What about their cardiovascular risk?
This may be a scientific approach to medicine, and don’t get me wrong: it certainly does help with managing particular diseases, but there is an art to medicine as well. The art of medicine is where we engage with our patient, developing a trusting and a therapeutic relationship. We celebrate their joys with them, commiserate during sad times, and become an important focus in their lives. We consider our patient, not just as a physiological being, but as a human being that lives within a family and within a community. We become their doctor.
'Staying at home' is a bit of a mantra for palliative care. When time is precious, home and family beckon as a place of safety and comfort, where a person can completely be themselves. Yet for so many reasons it is not always easy to achieve – and particularly the goal of a home death. In this blog post I will reflect on my recent experience in community palliative care in Northern Sydney, and how general practitioners and palliative care services together can help make this happen for patients, and to happen well.
First of all, why is this hard? I can list a few factors that mitigate against patients being cared for well and comprehensively at home. Firstly, complexity of treatment plans and multiplicity of treating teams means that many patients are 'working full-time' as patients. Decision-making responsibility and prognostic leadership are diffused between multiple teams: the oncologists (medical and radiation), surgeons, palliative care, and doctors managing other chronic conditions. These may be spread across multiple public and private sites of care, with variable access to information about what is planned and why.