The end of life is a time of high stress for patients and carers. It is a situation that everyone faces only once for themselves, and often only once for their carers as well. At a time when a person is suffering the symptoms of extremely serious disease, most of the day-to-day care is being offered by close relatives or friends with little or no knowledge or experience of such conditions.
They are frequently fearful of making a bad situation worse by inadvertently doing the wrong thing. Often there are multiple professionals involved in the care, and it is not uncommon for slightly different advice to be given by them to manage different situations. This causes confusion and more anxiety. The line of least risk for them is to transfer to hospital – a major reason for low rates of home care till death.
Furthermore, people are not really sure of what actually happens when a person dies. Will it be distressing? How do we best assist in minimising this distress? Finally, this is happening to someone that is usually greatly loved, and the spectre of loss looms darkly. It colours daily relationships, and can put significant pressure on both patients and carers if they do not understand what is happening.
For example, a full time GP can expect to see about 5-6 deaths per annum in the course of caring for over a thousand patients on average. It can be very hard to accumulate the knowledge needed to care for dying people well. With the population ageing, and people becoming more frail as they accumulate more health problems, more and more people will reach the end of life and the rate of deaths is set to more than double in the next 20-30 years.
Dying from frailty, multimorbidity, dementia or single organ failure will be how most of us will go. The process is not at all like the relatively rapid and dramatic deterioration seen in cancer patients, for which specialist palliative care services are so well equipped. Dying like this is firmly in the hands of GPs. Are they equipped to manage these mounting challenges?
End-of-life care is everyone’s business. With basic knowledge, it is possible for all health professionals to provide it. Where do they turn to when that knowledge is needed?
For the last ten years, Caresearch has provided high quality, evidence-based knowledge, which is tailored to the needs of patients, carers and different non-specialist health professional groups. The content is carefully researched and reviewed before release. It is an invaluable resource.
It is the one-stop shop for resources and initiatives from Australian Government programs. This enables rapid and effective rollout of the latest programs and policy initiatives coming from government and academia.
End-of-life care is also an area with a rapidly expanding research base. CareSearch has acted as a repository for established knowledge, a clearing house for hard-to-source knowledge such as conference proceedings and theses, and a source of a suite of tools to assist in the planning and execution of research to expand that knowledge. It has developed search filters to ensure that relevant literature can be sourced quickly and efficiently from the vast databases at health practitioners’ disposal. It provides research databases that can be used to collate research input from around the country and the world in real time.
Australia is ranked second in the world for the quality of care offered to people at the end of life just behind the UK. A major reason for this achievement is the comprehensive knowledge network that was established and is known as CareSearch. It serves the professional community well, as well as providing readily understood information to those in the middle of the challenges of suffering a life-limiting illness, or providing care for someone in that situation.
Congratulations to CareSearch on 10 years of peerless work in the field. Long may it continue!
Professor Geoffrey Mitchell, Professor of General Practice and Palliative Care, University of Queensland