CareSearch Blog: Palliative Perspectives

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.

A fundamental aspect of palliative care is that it is supposed to be “holistic care”. At an individual level, this emphasises the requirement to not only consider the many medical and practical aspects of a person’s care, but to also consider their emotional, social and spiritual needs.

At the level of policy and service development, this means being able to identify the many pieces of the puzzle that are required to support good end-of-life care for individuals, and to wisely fit these together so that the picture begins to make sense to everyone.

In South Australia, there has been steady progress in this regard, with the work of many individuals and organisations being the essential pieces that coming together to form a picture of a coherent end-of-life decision-making and care strategy which will better provide for the needs of people dying both in hospitals and in the community.

So, what are some of these “pieces”, and how do they fit together?

Pain is one of a range of common symptoms experienced by palliative patients. Keep in mind that a patient with a life-limiting illness can experience, on average, 12 or 13 different symptoms through their disease trajectory.

Pain is defined by the International Association for the Study of Pain as ‘an unpleasant sensory and emotional experience associated with actual or potential tissue damage’. Each of us has a number of influences that affect the way we perceive pain. The important thing to appreciate is that the perception of pain is unique to the individual.

The pathophysiology of pain is complex. Although it may help to classify pain as nociceptive or neuropathic to guide management, the reality is that pain is a syndrome with neuropathic, nociceptive, emotional, and psychosocial overlays. The cause of pain is often multifactorial and can involve the disease, its treatment, previous experience, and pre-existing morbidity. Not surprisingly, the management of pain is complex but it always begins and ends with assessment.

'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.

Providing palliative care in rural settings brings unique rewards and challenges. While many aspects of the care that rural practitioners provide are similar to that of our urban colleagues, the nature of practice in small towns and rural settings dictates some significant differences. The likelihood of knowing our patients outside the professional sphere is greater, and we not infrequently find ourselves caring for friends, their families, and colleagues. Absence of direct access to specialist palliative care services mean that much of our patients’ end-of-life care is provided by generalists – GPs, hospital doctors, domiciliary nurses, rural and remote and hospital nursing staff. Geography and distance may require innovative solutions, reliance on telephone consultations, and sometimes admission to hospital earlier than would be the case in urban centres.