Introduction by Croakey: Palliative care has been both overwhelmed and overlooked during the COVID-19 pandemic, but the specialty has also gained important insights on the need to focus more on social justice and ensure people are still able to have good and dignified deaths and farewells “through the devastating, lonely challenges of isolation” that COVID-19 imposes.
The pandemic was the focus of many sessions and discussions at last week’s Oceanic Palliative Care Conference 2021, as Croakey journalist Linda Doherty reports below. Listen also to an audio interview from Cate Carrigan, who is producing a #21OPCC CroakeyVoices podcast as part of the coverage.
Our latest report from #21OPCC also includes Ten Twitter Takeaways from Croakey columnist Alison Barrett, who live-tweeted the three-day conference at @CroakeyNews. Bookmark this link to follow ongoing #21OPCC coverage for the Croakey Conference News Service.
Linda Doherty writes:
When COVID-19 hit Australia last year demand for community-based palliative care surged, particularly when lockdowns restricted access for patients, families and health professionals to hospital services and medical specialists.
The important role of community palliative care was also highlighted in the United Kingdom’s rolling waves of COVID-19 as more people chose to die at home or in residential aged care facilities than in hospitals or hospices.
COVID-19 has led to much searching in the palliative care community for how to provide the best possible end of life care for those who die from COVID-19 or other causes during the pandemic, and for how best to care for the palliative care workforce who may be fearful and overwhelmed.
Among those who sought to do so was Michelle Wood, the Executive Officer of Banksia Palliative Care, which operates in Melbourne’s north-eastern suburbs.
Wood told the Oceanic Palliative Care Conference that her team’s workload rose by more than 25 percent during Melbourne’s extended second wave lockdown last year but 80 percent of clients were still able to be supported to die in their preferred site.
“Community palliative care is incredibly important when there are worldwide pandemics and people don’t want to go into hospitals,” she said.
In a later interview with Croakey’s Cate Carrigan, Wood said that every aspect of the service changed and grew, including managing more referrals, more admissions, and higher complexities for patients in their homes who avoided hospitals despite worsening symptoms because of fear of COVID-19 and visiting restrictions.
Her service saw a higher burden on the carers of those at the end of life, while her own teams worked in a climate of fear and had personal issues to deal with, like partners being laid off work and juggling home-schooling children, and even the “simplicity of being able to congregate” for emotional support was restricted.
“But we were still able to see each other, have a chat and debrief from 1.5 metres or more,” Wood said.
And, she told the conference, “the story goes on because we are still in lockdown, still unsure about every day,” she said, amid warnings from health and government leaders that COVID-19 hospitalisations and deaths in NSW and Victoria are not expected to peak until October.
Despite the complexities of the pandemic, including frequent changes to public health orders and restrictions, Wood said patients still required face-to-face symptom management, end-of-life care and bereavement support.
The “unsung heroes” in her team did not have the same support and level of infection control that hospitals provided but with ingenuity and willingness navigated the lockdown without a single staff or client infection.
And when Banksia Palliative Care could not access enough personal protective equipment (PPE) supplies, it got help from an unexpected quarter, with local tattoo parlours – shut down because of the lockdown – offering their supplies of gloves and hand gel.
“That actually made a big difference to keep everyone safe,” she said.
COVID-19 hit the United Kingdom early and hard, with more than 130,000 deaths revealing the need for improvements in palliative care for patients near the end of life, Katherine Sleeman, Laing Galazka Chair in Palliative Care, at King’s College London told the conference.
Despite the UK being a world leader in palliative care, provision was still “inadequate and unequal”, even prior to COVID-19, with an estimated 100,000 people a year who die unable to access services, she said.
People in disadvantaged areas or circumstances were less likely to receive palliative care and the gap in access for the rich and poor was increasing.
Sleeman said palliative care services were overwhelmed during the early pandemic, there was a “massive shift” in place of death – with more choosing to die at home or in aged care facilities – and widespread shortages of staff and safety equipment.
To bridge the research gap for pandemic palliative care and services, hundreds of practitioners turned to Project ECHO, a videoconferencing initiative of Hospice UK, to brainstorm solutions and share resources.
A rapid systemic review drew from Severe Acute Respiratory Syndrome (SARS) outbreaks in Asia in the early 2000s that provided lessons such as the need to move resources out of hospitals and into community settings where patients preferred to be cared for, for standardised data and monitoring, and for having enough essential staff, medicines and safety equipment.
“Palliative care was an essential frontline pandemic service but services felt under-recognised and were often overlooked, which impacted on what they could deliver,” Sleeman said.
But she said the pandemic was also a once-in-a-generation opportunity to reinforce the lessons learnt – the need for better integration of palliative care teams across all healthcare settings to identify and tackle inequities, recognition and support for care homes, and the establishment of collaborative networks of clinicians, academics, policymakers, patients and the public.
Sleeman said the Marie Curie Better End of Life Program was continuing to investigate how COVID-19 had affected dying, death and bereavement in the UK and what could be learnt to improve outcomes and experiences through evidence-informed policy engagement.
The last few days
One of the first Australian studies to examine the end of life symptom experience of people dying of COVID-19 has shown that the number of referrals to palliative care was “alarmingly low”.
Royal Melbourne Hospital presenters Rachel Everitt and Jia Yin Tay told the conference that the aim of their study, COVID-19 end-of-life care: symptoms and supportive therapy use in an Australian hospital, was to help clinicians anticipate palliative care needs of COVID-19 patients.
The study found that breathlessness was the most frequent clinician-reported symptom in the final three days of life, followed by agitation and pain, with most patients requiring dose escalation of opioids and midazolam, a continuous sedative infusion.
The Royal Melbourne Hospital cohort of 58 patients had a median age of 87 years and died after a median of 11 days in the hospital’s acute medical and aged care wards and the intensive care unit between 1 January 2020 and 30 September 2020.
But just eight of the patients were referred to palliative care and Tay said more research was required to investigate the barriers to care, particularly now that the Delta strain was affecting much younger patients than the cohort studied.
“Hopefully we will be able to transform these deaths into meaningful lessons on how we can support patients with COVID through the devastating, lonely challenges of isolation in order for them to have good and dignified deaths,” she said.
The role of telehealth
The pandemic also saw the rapid escalation of telehealth and a large study of its use in palliative care at three Melbourne acute hospitals delved into perceptions of acceptability by clinicians and patients.
Professor Jennifer Philip, Chair of Palliative Medicine at the University of Melbourne and St Vincent’s Hospital, said telehealth was transformational and offered new opportunities.
But, she said, it was ultimately viewed by both clinicians and patients as “second best”.
The study of findings from 928 clinician surveys matched to 125 patient surveys found patients embraced telehealth more than clinicians, for the convenience and continuity of care or when patients were simply too unwell to travel to physical appointments.
But there was a sense that telehealth was “vending machine” transactional care that affected the physicality of care, connections and therapeutic relationships between palliative care professionals and patients.
Philip said a hybrid model of care was likely to emerge in the future, with a mix of face-to-face appointments and telehealth.
“We’re all a bit scared at the end of life but you know some reassurance to look at someone’s face or even a touch on the shoulder or a shake of a hand makes a huge difference,” she said.
Eighteen months down the track, COVID-19 has exposed just how hard it is for people from more marginalised communities to access palliative care, leading palliative care expert Distinguished Professor Patsy Yates told the conference at a closing plenary session to sum up key issues canvassed by participants.
Yates said the pandemic disruption had been felt “emotionally and practically” across the palliative care sector.
It had exposed inequities “in terms of access, inequities in quality and the way palliative care is delivered” to many under-served groups, she said.
The conference heard these groups included people who are homeless, Aboriginal and Torres Strait Islander people, sexuality and gender diverse communities, culturally and linguistically diverse communities, including asylum seekers and refugees, illicit drug users and people in prison. (Croakey will be looking at the palliative care experience of these groups in our next report on the Oceanic Palliative Care Conference).
“We’re at a significant time of disruption. [COVID-19] has exposed some real gaps and the fragility of our healthcare system and our palliative care system,” said Yates, Executive Dean of the Faculty of Health, at Queensland University of Technology.
“The social justice aspect of palliative care has always been there, but it was just so prevalent in many of the [#21OPCC conference] conversations, to make sure that all people locally and globally can benefit from what palliative care can provide.”
That imperative has been underscored by a new UK report, signalled last week at the conference by Katherine Sleeman, from a consortium of British universities and palliative care research centres that have investigated the negative impact of COVID-19 restrictions and health policies on ethnic minorities.
The study, Palliative care for patients with severe covid-19, found that visitor restrictions, for example, removed patients’ psychosocial support and advocates as well as their personal and professional translators, which were “for many, their only means of communication”. It noted that ethnic minority groups in the UK traditionally also had large numbers of family members involved in providing care, support and decision-making.
“There is a key lesson from this research,” warned study co-author Dr Jamilla Hussain, NIHR Clinical Lecturer at Wolfson Palliative Care Research Centre.
“To provide good end of life care for marginalised groups we need to move away from business as usual which has ingrained health inequalities – and many palliative care services did not do this during the first wave of the pandemic.”
Read the following Twitter threads of COVID related sessions
- Palliative Care and COVID-19, tweeted by Alison Barrett/Croakey News: or read via this PDF
- The future of palliative care in the UK: Learning from policy and practice in a pandemic: Katherine Sleeman plenary tweeted by Rachel Coghlan and by Marie McInerney, or read via this PDF
- Palliative care during the COVID-19 pandemic – Palliative Care Australia report
- Palliative care and the COVID-19 pandemic, The Lancet
- Palliative Care, COVID-19 and Universal Health Coverage Report
Ten Twitter Takeaways