Introduction by Croakey: Western palliative care experts and programs need to support the development of palliative care systems in poorer nations, including in the Pacific and Africa, in ways that are rooted in local experience, culture, contexts and belief systems and do not ‘other’ different ways of delivering care.
That was one of the key messages from an international panel plenary session at the Oceanic Palliative Care Conference, which issued its own statement, urging ongoing international support that respects traditional and local practice.
It said “top-down teaching programs are inappropriate and ineffective in all contexts” and that curricula should be developed in partnership with local communities to ensure uptake, “based on relevance and respect for all cultures and beliefs concerning illness and the roles of families and communities”.
Rwandan specialist Dr Christian Ntizimira told the conference he had been shocked on his first visit to the United States to see patients alone in a big hospital room, flanked by a television and photos of loved ones, compared to Rwanda where patients were surrounded by their loved ones, who would be involved in paying their bills and feeding and nursing them.
“In the context of Rwanda, everything is in the shoulder of the families and their communities,” he said, adding that when clinicians call a family meeting at a hospital, “it’s 20 or 40 people who have to come, (who are) connected to the patient.”
Nitzimira, who delivered a keynote address at the 2019 conference, urged experts from different contexts to learn from each other, to be: “one day teacher and one day student”.
In this article from the Croakey Conference News Service‘s continuing coverage of #21OPCC, you can read Twitter threads and interactions on the international session, and, below, the conference statement which has now been endorsed by participants.
Bookmark our coverage here.
Working together globally
The International Panel Session title was: Working together for better palliative care: what would true international collaboration with impact look like? It featured:
- Rachel Coghlan (Chair): Board Member, Palliative Care Australia, PhD Candidate, Centre for Humanitarian Leadership, physiotherapist, palliative care
- Dr Christian Ntizimira: Executive Director, African Center for Research on End of Life Care (ACREOL), Rwanda
- Dr Malama Tafuna’I: Pacific Research Fellow, Centre for Pacific Health, Va’a O Tautai, Division of Health Sciences, University of Otago
- Associate Professor Ghauri Aggarwal: Senior Staff Specialist, Concord Centre for Palliative Care, Concord Hospital, New South Wales
- Associate Professor Odette Spruijt: Founder and Chair, Australasian Palliative Link International, WPPCAN
Croakey’s Alison Barrett live tweeted the session at @CroakeyNews. Below is a selection of her tweets:
Palliative care in lower-middle income countries is “woefully” poor, says Rachel Coghlan.
Curing and conquering all diseases has become healthcare priority, with palliative care not receiving as much focus.
A/Prof Ghauri – Asia-Pacific region huge and diverse region. Core is building networks between countries.
APHN (Asia Pacific Hospice Network) facilitated a network approach and initiatives. Coordination and collaboration – at onset work with local government at highest level.
Identify local champions, will result in identifying local needs. Advocate for Palliative Care to be a core business.
“Collaboration not about reinventing but sharing resources” – A/Prof Ghauri
Train the trainers and empower nurses. Countries such as Aust, NZ have advancement in areas that could be shared with LMIC.
A/Prof @OdetteSpruyt talking about IHPC invited Western Pacific region to provide some advocacy to @WHO about pandemic response.
Network in region to focus on advocacy and raise awareness of need to increase access to palliative care and improved pain medication.
Christian – in the context of Rwanda, advocacy process is slow, mostly about access in region. #COVID19 situation are trying to rethink about how advocacy can be done.
What has been done – Rwanda was the only country in Africa which had palliative care policy 10 years ago. Now, 10-15 countries have.
In Rwanda context, “everything is on the shoulder of the family and communities” – family meetings to decide on palliative care pathway may involve 20-30 people.
Dr Malama talks about palliative care in Samoa – one barrier to service includes cost.
Other barriers in Samoa: limited health literacy, people often present late in illness, palliation only thing to do. Pain relief another issue.
Informal caring is the fundamental of palliative care in many LMIC around the world.
One model for end-of-life care for all won’t work – Rachel. One size doesn’t fit all.
Christian – collaboration exists but need to emphasise critical elements. If to create a strong situation of collaboration, need to look at traditional palliative care and learn from each other.
Talks about how, in US, he was surprised to see a patient on own in big room with TV and pictures, different to scenario in Rwanda where large family surround the patient.
Dr Malama – Western health system dominant in Pacific region now. Own cultural traditional beliefs embedded in health.
Traditional beliefs may impact how people engage with Western health systems #21OPCC “Family and community are central to way of life” – Dr Malama, similar experiences in Rwanda.
Extra listening:
‘Networking in the Network’ with the Western Pacific Palliative Care Advocacy Network (WPPCAN). Introduction by Associate Professor Odette Spruijt, founder of Australasian Palliative Link International (APLI) which fosters links in palliative care throughout the Asia-Pacific region.
Reflections on the international panel session
Panel chair Rachel Coghlan tweeted her reflections on the session. You can read them below or via Twitter here.
My takeaways now that I’ve had time to reflect and de-stress.
Traditional palliative care existed before modern palliative care.
We need to unfix ourselves from our own models.
In mature palliative care systems, we may have expertise, but we are not always the “experts”.
We need the best forms of collaboration and communication. Mutual learning is key
Connecting with communities, and connecting with identities is critical.
Decolonising palliative care is not about North and South, East and West – it is about truly connecting minds and hearts. Communities, and patients, don’t care about politics.
Never think that your way, or your language, or your definition of a word is the “right” way. Differences in language and definitions exist. Privacy, diagnosis, dignity, family, mean different things in different contexts.
Informal caring by families and communities is a fundamental building block for developing palliative care. We need to look for what already exists in communities organically, and build from there.
Everyone can be an advocate for palliative care. Advocacy can seem complicated, and messy, and formal, but we can all play a role.
Education and training for palliative care is important, but education needs to happen within the contexts where it is needed. Communities need to be involved in developing curricula. Top-down, paternalistic approaches are ineffective, and inappropriate.
We need to keep the space open, to make the space grow, to evolve, gently, together. All voices are important – from the specialists down to every community member.
Governments have a critical role. We can all advocate to governments. The Australian Government has a role to play in greater investment for palliative care in our region.
And THAT is how we achieve true international collaboration for better palliative care with impact
Further reflections
2021 Oceanic Palliative Care Conference statement
INVEST
- Build the palliative care workforce by investing in training and mentoring, position establishment and retention strategies to ensure sufficient specialist palliative care physicians, nursing, allied health professionals and volunteers across the Oceanic region to deliver high quality, culturally appropriate palliative care.
- Invest in sustainable regional and international collaborative partnerships to facilitate the exchange of knowledge, support development of quality palliative care services and access to essential medications across the Oceanic region.
- Invest in telehealth and technology to ensure people with palliative care needs and families, clinicians and services are connected in meaningful ways that supplement face-to-face care, and facilitate strong communication channels.
- Invest in staffing, education, and systems to ensure that quality end of life is core business across all aged care and disability care settings.
- Increase investment in palliative care and end-of-life research and data collection and data sets, to ensure contemporary evidence informs policy and practice.
- Fund evidence-based grief and bereavement services for families and carers across all palliative care services in hospitals, aged care and in the community.
- Invest in targeted palliative care outreach services that provide care and support to people who are homeless.
CHALLENGE
- Critically challenge legislative frameworks to ensure they support the right to palliative care for all who need it, when they need it, and where they need it.
- Challenge the barriers that contribute to community silence around death, dying, palliative care, and grief and loss.
- Challenge funding and service models which cause inequity of access to quality palliative care services based on geography, gender, sexuality, bodily diversity, disability, cultural identity, values, socio-economic status, housing status, incarceration, age and stage in life-limiting illness.
- Challenge governments in the region to strive for Universal Health Coverage (UHC) which includes palliative care.
- Challenge education providers to ensure that the palliative care is part of all undergraduate medical, nursing and allied health degrees.
CHANGE
- Change any practices within health and aged care systems that inhibit early referral to palliative care services.
- Change all pandemic, disaster and crisis preparedness, planning and response to be inclusive of the role of palliative care and the needs of those requiring palliative care.
- Change policies and practice so that the needs of Aboriginal and Torres Strait Islander Peoples in Australia, and Indigenous and culturally diverse peoples across the Oceanic region are addressed, and members of these communities have their end-of-life care wishes and preferences met.
- Change existing structures of opioid and essential medicine policy, delivery and access if these limit evidence-based pain and symptom management, and access in the persons care location of choice.
- Change policies and practices so that the specific palliative care needs of infants, children and young adults are recognised and met.
See Croakey’s archive of stories about palliative care.
See our coverage of Palliative Care Australia’s conferences in 2017 and 2013.
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