Death and the end of life are difficult topics to discuss with patients. It is widely accepted within the health care industry that the best time to discuss advance care planning is when a person is still medically stable, rather than leaving it until the person’s health is rapidly deteriorating. However, a person with dementia should always be consulted and involved in any decision-making process to the greatest possible extent. The Cognitive Decline Partnership Centre has online resources available to assist patients, carers and medical practitioners to better engage in this supported decision-making process.
Access to palliative care is important for people with dementia, their carers and support network. Early referral is particularly important. Clinicians need to explore their patients’ values and preferences to inform their care planning, in a way that is as inclusive as is possible of the person with dementia. Timmons et al provide a useful synopsis of the reasons for early and then flexible access to quality palliative care, both generalist and specialist, for the person with dementia and their carers1.
It has taken significant time to move beyond the misconception that palliative care is only for those with cancer. General Practitioners and the non-palliative specialist medical teams have come to recognise that palliative care has a role to support people with any life-limiting chronic disease. Furthermore, with the significant advances in cancer treatments and survivorship, the traditional disease trajectories no longer fit, and many of the cancer journeys have greater similarities to the chronic disease trajectories. The latter may map across a longer period and require a range of more nuanced supports that involve each of the physical, psychosocial, and spiritual domains.
The National Palliative Care Standards have for many years underpinned Australian palliative care practice. However, in practice these have had greater impact on the specialist palliative services both in-patient and community. Palliative Care Australia (PCA) have for this reason developed and recently launched a supplement to these standards specifically designed for all Health Professionals and Aged Care Services and this is a useful resource for medical practitioners in either General Practice or the acute sector2.
Increasingly palliative care is discussed within the context of generalist palliative care and specialist palliative care. The interplay between the two is based upon the complexity of a patient’s situation. Primary care represented by General Practitioners within their practices is a key focal point for ensuring the provision of high quality, consistent generalist palliative care. Three key online resources available to medical practitioners are Caresearch, a source of pallative care knowledge and evidence for all health professionals; PCC4U for undergraduate medical students; and ELDAC, which has a particular focus on palliative care and aged care.
A key role of General Practice within the palliative care space involves effectively partnering with a range of community care, disability, and residential aged care providers. Improved systems integration or coordination is often presented as the panacea for delivering better health outcomes, however, in practice this occurs most achievably at the patient level. This is best represented by the case conference or family meeting with the patient, their carer, and input from key service providers to discuss and develop well thought out, regularly reviewed, individualised plans of care. Continuity of General Practitioner care is an under-recognised feature of successful community-based care coordination or care management.
The consistent, trusting professional relationship of a patient’s regular GP predicated on sensitive, respectful, dignity-enhancing conversations underpins successful care in the community. A recent study by
Delgado et al adds weight to the view that GP continuity of care improves health outcomes as well as reducing major adverse events for patients with dementia3.
Patients with dementia are confronted daily with the related social stigma and realistic fear of losing autonomy and decision-making rights. Early advance care planning that begins with a shared exploration of the patient’s values and preferences and informs their decisions, priorities and goals is a key to maintaining that person’s health and lifestyle in their preferred location for as long as is possible, up to and including their death. An obstacle to achieving this is sometimes the medical practitioner’s concerns about how best to interact and communicate with the patient with dementia. A resource tailored for GPs on the Cognitive Decline Partnership Centre website is Communicating: Diagnoses & Consultations for people with Dementia.
Increasingly, the PHNs across Australia have been tasked with greater involvement in supporting primary care with generalist palliative care and better addressing the needs of people with dementia. Health Pathways WA, an initiative of the WA Primary Health Alliance, is an example of the utility of online clinical pathways, including one for palliative care, that are available to assist General Practitioners.
Central to the provision of effective palliative care for people with dementia, the GP should be able to mobilise the additional resources of a local specialist palliative care team to address palliative care complexity as these arise and provide the intensive end-of-life support that helps realise their patients’ preferences to die at home.
There is a growing awareness in the community about the importance of listening to, hearing, and acknowledging the wishes of those individuals who are at greatest risk of not being heard because of the cognitive changes associated with their life-limiting conditions. We know there are many opportunities where with the right support, people with dementia can continue to lead their own care decisions and plans. Every individual is different and the care they receive reflects this.
Andrew Allsop is Director of Clinical Operations, Palliative Care (WA) at Silver Chain.
Montana Waters | Media Advisor
T 0409 200 275 | E Montana.Waters@silverchain.org.au
About Silverchain Group
Silverchain Group is Australia’s leading in-home care specialist, providing health and aged care services to more than 105,000 clients a year. Silver Chain has been trusted by Australians to deliver care that is differentiated by quality and safety for more than 125 years.
We provide home-based health and aged care services in Western Australia, South Australia, Victoria, Queensland and New South Wales, in partnership with our clients, as well as governments, hospitals and health services.
Our services comprise specialist nursing, palliative care, home care and support services, home hospital, allied health services, and the provision of equipment and monitored personal alarms. We employ more than 4,400 people, including clinical teams, care professionals, allied health experts and a dedicated research and innovation division. Our aspiration is to create a better home care system for all Australians.
1 Timmons S, Fox S, Drennan J, Guerin S, Kernohan W. George. Palliative care for older people with dementia - we need a paradigm shift in our approach. Aged and Ageing 2022; 51: 1-4.
2 National Palliative Care Standards for All Health Professionals and Aged Care Services. PCA 2022.
3 Delgado J, et al. Continuity of GP care for patients with dementia: impact on prescribing and the health of patients. British Journal of General Practice Feb 2022; e91 – e98.