A/Prof Mark Boughey is the Director of Palliative Medicine at St Vincent’s Hospital, currently on sabbatical with SCV. He is also the Clinical Lead for palliative care with our Centre for Clinical Excellence – Older People.
How much do you really know and understand about palliative care? When you hear the term, do you automatically assume it means someone’s life is coming to an end very soon?
You wouldn’t be the first person to feel challenged thinking about what receiving palliative care means. The focus on dying continues to percolate and colour the recognition of palliative care needs, and the reluctance to connect people at an appropriate time to services.
While care for a dying person is a cornerstone of palliative care, the ambition of those who work in this area know that palliative care is an evolving and increasingly complex area of healthcare. It supports people, their caregivers and the healthcare professionals as a person’s serious illness advances – often over months and years of an illness’s trajectory, marking the transitions from when dying is a very distant possibility to it becoming an acknowledged probability, and eventually, a realised inevitability.
When challenged by these transitions, it is not surprising that people search for certainties in very uncertain times. More recently, access to voluntary assisted dying has become a new consideration for some to cement certainty, at a time (or in preparation for the time) when dying may seem inevitable for them.
What is important to those working in palliative care is more about the enduring therapeutic relationships with people, their families and the treating teams, that hopefully spans and bridges across all three transition times, irrespective of whether voluntary assisted dying is sought.
What is now clear is that the earlier palliative care is integrated into a person’s care, the better the outcomes for the person, their caregivers, and their healthcare providers. Early referral increases the likelihood that a person can live and eventually die in their preferred place of care, which for most is in their home or residential care home.
Palliative care infuses the whole of health, from primary, secondary and tertiary community, outpatient and hospital-based care. Services operate in all settings and are potentially available for all illnesses and all ages, from the perinatal period, through childhood, young adulthood and adults, to older people. What you may not know is that palliative care is increasingly represented in the work of non-malignant degenerative and chronic illnesses, and as we have recently experienced, those with coronavirus (COVID-19).
The key tasks of palliative care can readily be articulated; from illness-related symptom management, acute treatment planning in the context of advance care planning and goals of care considerations, complex illness management and planning, attention to psychosocial and psychiatric issues, restorative and respite care, as well as specific care needs for the imminently dying, flowing into dedicated caregiver bereavement follow through.
Of greatest importance is the collaborative, interdisciplinary based approach, that prioritises a person-centred and shared decision-making approach, where communication has become a therapeutic tool – like a surgeon with their scalpel – that brings the benefits of palliative care, adding the significant value to the healthcare experience.
These core aspects of palliative care were significantly challenged and impacted on during the COVID-19 pandemic, as services pivoted under changing conditions. This was made even more difficult by the restricted access families had to hospitalised loved ones or restricted access to the community facing healthcare teams, including volunteers, that would support people in their home.
What COVID-19 highlighted and amplified for people to see, was that the specific tasks for palliative care were so much more than just care of a dying person. These tasks varied, depending on those transitional considerations, as to whether dying was a possibility, or a more likely probability, or an inevitability.
Triaging SCOVID/COVID patients from emergency through the admitting medical, respiratory and intensivist COVID teams, saw palliative care focussing on the discussions around acute treatment planning in the context of a person’s advance care planning and goals of care. For those with COVID-19 and hoping for survival, complex illness symptom management advice and planning predominated, whilst always mindful that those facing or finding death inevitable, palliative care became about devising specific ways to deliver care and medications for the imminently dying, bringing a family onboard to be able to connect and communicate with their dying loved one.
With such a wide reach and working with such a diverse range of ages and diseases, capacity and the capability of services to meet increasing consumer and health service demand is a known concern. Building expertise in the healthcare workforces, away from the specialised palliative care workforce, has been a longer-term priority.
Now transitioning to the SCV Centre of Clinical Excellence – Older Person, the work of the Palliative Care Clinical Network has aimed to prioritise improvement through the interface of specialist and generalist services, so that generalists can provide safe, evidence-based care that has been guided by the specialist groups.
Opportunities to review and rebuild guidance work have been important achievements. These have include:
- the best care for a dying person
- the availability of anticipatory medication and palliative sedation therapy when dying becomes inevitable
- guiding the ability to switch essential oral medication to subcutaneous delivery when swallowing is no longer possible
- conversion of opioid medication from one to another when opioid or rotation is warranted.
Work continues, albeit delayed 12 months by COVID-19, to build towards the integration of paramedical staff into the structures and services of community-based palliative care services through the WAVE (We are Ambulance Victoria Engaged) project.
The priority of this improvement work is to continue to align with the Victorian Government’s’ vision for end of life and palliative care to be equitably provided, more often in the place of a person’s choice, with an increasingly skilled workforce that understands the breadth of what palliative care is and realise what it is trying to achieve.