Let’s look at death differently

By Learne Durrington, CEO WA Primary Health Alliance

Learne Durrington headshot

Against the backdrop of a damning interim report released by the Royal Commission into Aged Care, I have been reflecting on the words written by the American writer, Joseph Epstein who points out [my paraphrasing]: “we do not choose to be born or die, or the conditions of our death… but what makes us significant is what we do or refuse to do. We decide and we choose, so we give definition to our lives.”

My father recently passed away, in a setting he did not choose, on a timeline he would not have wanted, encased in layers of bureaucracy there to assist care transition, yet in its implementation did the opposite. I get the overwhelming feeling we as a society wish for our elderly to die in a place of their choosing, with the dose of medical care they select, surrounded by loved ones, but in the current climate, this so often is not the case.

Over the past 18 months, through the lens of my own experiences, the system to which most of us will one day rely upon is fragmented, under-resourced and now with the onset of the Royal Commission, overwhelmed with regulation in an ever-growing challenging, changing landscape.

Our role in Aged Care

WA Primary Health Alliance, as part of the Australian Government’s Primary Health Network (PHN) initiative prioritises aged care as one of seven priority areas, yet to date our commissioning work has been inhibited by not truly clarifying the particular role we should play.

We have the remit to partner with community, service providers, GPs and allied health professionals, to weave the fabric together so that care can be delivered in a manner that is fit for purpose, and access to that care is equitable no matter where you live.

In this context, I believe our part in this jigsaw is as follows.

The Australian Government announced in the 2019-20 Budget that from next year an allocation of $448.5 million over three years will be available to implement a voluntary enrolment scheme within general practice, providing continuity of care and convenience for patients over the age of 70.

A male doctor sits face to face with an elderly woman. They are in the doctors office . The focus is on the doctor who sits at his desk holding a digital tablet and smiling at the woman. The woman face cannot be seen.We will work collaboratively with general practices to engage their older patient cohort to increase the uptake of over 75 health assessments, and advance care plans. We know anecdotally that for people over the age of 65, they would prefer their GP or other trusted primary care provider raise the issue of end of life care, as it is seen as a challenging conversation to engage with loved ones about planning for the worst-case scenario.

As more people choose to be cared for close to home, the burden on primary care increases. We recognise that general practice is the cornerstone of primary care, working on the front line to keep Western Australians well and out of hospital. We will continue to invest in important primary care services that assist GPs and their practice teams, to provide care for their patients, and to keep people out of hospital.

WA Primary Health Alliance is guided by the Australian Department of Health to commission psychological therapy within residential aged care facilities throughout Western Australia. We acknowledge that residents within these facilities have deteriorating health needs, and a growing population entering care later in life with multiple chronic health conditions.

We are also working with residential care providers to conform their software so they can use My Health Record, enabling more timely access to health summaries, which assists residents who have trouble articulating their needs or history, and provides a space to digitally store a resident’s advance care plan.

Listening to communities about what’s important to them

Against the backdrop of a damning interim report released by the Royal Commission into Aged Care, I have been reflecting on the words written by the American writer, Joseph Epstein who points out [my paraphrasing]: “we do not choose to be born or die, or the conditions of our death… but what makes us significant is what we do or refuse to do. We decide and we choose, so we give definition to our lives.” My father recently passed away, in a setting he did not choose, on a timeline he would not have wanted, encased in layers of bureaucracy there to assist care transition, yet in its implementation did the opposite. I get the overwhelming feeling we as a society wish for our elderly to die in a place of their choosing, with the dose of medical care they select, surrounded by loved ones, but in the current climate, this so often is not the case. Over the past 18 months, through the lens of my own experiences, the system to which most of us will one day rely upon is fragmented, under-resourced and now with the onset of the Royal Commission, overwhelmed with regulation in an ever-growing challenging, changing landscape. Our role in Aged Care WA Primary Health Alliance, as part of the Australian Government’s Primary Health Network (PHN) initiative prioritises aged care as one of seven priority areas, yet to date our commissioning work has been inhibited by not truly clarifying the particular role we should play. We have the remit to partner with community, service providers, GPs and allied health professionals, to weave the fabric together so that care can be delivered in a manner that is fit for purpose, and access to that care is equitable no matter where you live. In this context, I believe our part in this jigsaw is as follows. The Australian Government announced in the 2019-20 Budget that from next year an allocation of $448.5 million over three years will be available to implement a voluntary enrolment scheme within general practice, providing continuity of care and convenience for patients over the age of 70. We will work collaboratively with general practices to engage their older patient cohort to increase the uptake of over 75 health assessments, and advance care plans. We know anecdotally that for people over the age of 65, they would prefer their GP or other trusted primary care provider raise the issue of end of life care, as it is seen as a challenging conversation to engage with loved ones about planning for the worst-case scenario. As more people choose to be cared for close to home, the burden on primary care increases. We recognise that general practice is the cornerstone of primary care, working on the front line to keep Western Australians well and out of hospital. We will continue to invest in important primary care services that assist GPs and their practice teams, to provide care for their patients, and to keep people out of hospital. WA Primary Health Alliance is guided by the Australian Department of Health to commission psychological therapy within residential aged care facilities throughout Western Australia. We acknowledge that residents within these facilities have deteriorating health needs, and a growing population entering care later in life with multiple chronic health conditions. We are also working with residential care providers to conform their software so they can use My Health Record, enabling more timely access to health summaries, which assists residents who have trouble articulating their needs or history, and provides a space to digitally store a resident’s advance care plan. Listening to communities about what’s important to them Whilst we advocate for more funding in the delivery of home care packages, greater governance and control over the current funding mechanism in the aged care arena, we are acutely aware that we need to find a way to focus on helping those at risk of poor health outcomes, to listen to communities and understand their unique health needs, and to work across the entire system to enable people to live and die well. In speaking more recently with Michelle Jenkins, member of our Metropolitan Community Advisory Council and CEO of Community Vision, it has become apparent the whole topic of dying requires a substantial shift. Michelle believes our attitudes need to change, families and the health sector inclusive, of how to look at death in a different way. Even when someone wishes to die at home and be cared for by their family, the reality is incredibly difficult. So often families, the informal carers are not equipped to manage their loved ones deteriorating condition which is multi-faceted on top of the emotional toll caring for a dying person takes. Michelle reflected to me that often hospice or hospital care is the only choice for people, regularly being transferred between facilities as health needs change rapidly, and the disheartening reality of many passing away in a hospital bed alone. Whilst the final report to be handed down by the Aged Care Royal Commission will presumably suggest large system-wide changes, I agree with Michelle that a collective shift in attitude towards death and dying will have an influentially positive impact. It starts with us all, talking to our families about our end of life wishes, providing better palliative care options, and having an advance care plan. Whilst we advocate for more funding in the delivery of home care packages, greater governance and control over the current funding mechanism in the aged care arena, we are acutely aware that we need to find a way to focus on helping those at risk of poor health outcomes, to listen to communities and understand their unique health needs, and to work across the entire system to enable people to live and die well.

In speaking more recently with Michelle Jenkins, member of our Metropolitan Community Advisory Council and CEO of Community Vision, it has become apparent the whole topic of dying requires a substantial shift. Michelle believes our attitudes need to change, families and the health sector inclusive, of how to look at death in a different way.

Even when someone wishes to die at home and be cared for by their family, the reality is incredibly difficult. So often families, the informal carers are not equipped to manage their loved ones deteriorating condition which is multi-faceted on top of the emotional toll caring for a dying person takes.

Michelle reflected to me that often hospice or hospital care is the only choice for people, regularly being transferred between facilities as health needs change rapidly, and the disheartening reality of many passing away in a hospital bed alone.

Whilst the final report to be handed down by the Aged Care Royal Commission will presumably suggest large system-wide changes, I agree with Michelle that a collective shift in attitude towards death and dying will have an influentially positive impact. It starts with us all, talking to our families about our end of life wishes, providing better palliative care options, and having an advance care plan.