Introduction: Electronic Palliative Care Coordination Systems (EPaCCS) are designed to support the documentation and sharing of care preferences of people living with chronic, progressive illnesses across England. EPaCCS are part of a patient’s electronic medical record where a health professional (HP) can update a patient’s preferences for care.

Aim: To evaluate how HPs use EPaCCS to document and share care preferences in the management of patients receiving palliative care.

Methods: An online survey was sent to HPs in community and hospital settings in two regions in England where EPaCCS are embedded in services. The survey consisted of questions about respondents’ level of familiarity with EPaCCS and how they perceive EPaCCS to support documentation and sharing of care preferences as well as items from the NOrmalisation MeAsure Development questionnaire. Descriptive analysis and latent class analysis were used.

Results: We received 569 responses spread across all community and hospital settings. Of the 465 HPs that were able to access an EPaCCS, 43% had a high degree of familiarity with EPaCCS and strongly agreed that it was a normal part of their work. Distinct classes were identified in terms of strength of familiarity with EPaCCS, with hospice teams most likely to feel a strong familiarity with EPaCCS, and general practice and care home workers less likely. 

Conclusions: Widespread variation in access and familiarity with EPaCCS was identified despite the presence of mature systems in surveyed regions. EPaCCS require optimisation to avoid disparities in access to patient care preferences that are documented, shared and accessed across a multitude of care settings. The identification and amelioration of factors restricting HP familiarity and access should be prioritised.

Background: Despite improvements in survival because of routine use of high-dose therapy, autologous stem cell transplant and the introduction of novel therapies, multiple myeloma is still incurable. Most patients will relapse and/or become refractory to treatment, with the disease becoming more aggressive and drug resistant over time, with shorter response intervals.  

Aim: To understand how people living with myeloma in three European countries report their understanding of and access to supportive and palliative care. 

Methods: A qualitative interview study with 36 working age people treated for myeloma in Poland, Czechia, and Germany. Analysis was inductive and thematic, informed by principles of intersectionality to inform intra- and cross-cultural comparisons alongside consideration of gender, age, and social class. 

Results:  Across all three countries, healthcare providers rarely spoke with patients about anything other than remission, and hence did not speak openly about palliative care. Hope for new treatments was the default position; yet patients were acutely aware of the incurable nature of myeloma, reflecting on other patients they had met previously and were aware had died, as well as their own mortality and doubtful longevity.  

Many respondents obliquely referred to their shortened lifespan and likelihood of dying from myeloma. Other respondents were much blunter in articulating their awareness alongside expressing concerns about not having optimal care and support.

Conclusion: Myeloma is not a unitary disease, nor is its experience singular across three European countries sharing borders with each other. Yet, timely integration of sensitive conversations about supportive and palliative care was not occurring in these countries, and is an urgent area for service enhancement. 

The study of palliative care in humanitarian crises is in its infancy. Limited existing research, policies and programs often make assumptions that palliative care barely exists in crisis contexts; or about how easy or hard it is to ‘do’ palliative care, what communities are missing, and what needs to happen next. Hearing those on the inside – their fears, dreams, existing ways of caring, and ideas for their own futures – is critical.

 

This research is about understanding caring for the seriously ill and dying in situations of extreme crisis, with a focus on armed conflict. It asks: What are meanings of suffering, illness and dying amidst compounded issues of oppression and war? What are the trade-offs and wicked decisions in deciding how and to whom to deliver care in war? What are the values and cultures that shape caring responses of those living through crisis? And what are the various ways in which communities continue to front up and respond to suffering with whatever means available? What does palliative care look like across diverse humanitarian contexts?

 

This presentation draws on the rich and personal stories shared through 58 in-depth interviews with participants in the Gaza Strip conducted during 2020/2021.

 

In Gaza, communities endure not only individual, but also collective - social and political - experiences of suffering; and provide collective ways of caring with finite resources. The accumulated exposure of communities to oppression and war changes standard ideas of caring for the seriously ill and dying. There is no singular path to a palliative care future for those facing crisis. New ways of creating meaningful discourse, research and practice are needed to understand plural futures for palliative care across diverse humanitarian settings. This is about listening to, and learning from, those on the inside of crisis.

 

What does palliative care look like in humanitarian crisis? It doesn’t exist, does it? We know the way, right? “A lot of what I do is palliative care. A lot of it”. Hearing those on the inside of crisis to shape plural palliative care futures. 

Introduction: In 2014, World Health Assembly (WHA) called for improved access to palliative care, emphasizing primary health care and community/home-based care. Neno District Health Office in Malawi began implementing palliative care at Neno District Hospital and Lisungwi Community hospital in 2011 and 2018 respectively. In 2021, the district adopted the WHA resolution, decentralizing PC services to two primary facilities. We aimed to assess the impact of service decentralization.

Methodology: We conducted 5 focus group discussions and 10 key informant interviews with adult (18 years and above) palliative care patients and their healthcare providers separately, at two primary health facilities-Ligowe and Magaleta health centers from June to July 2022. Mixed healthcare workers and harmonious patient groups were purposefully selected from key duty stations. All FGD and KII were audio-recorded, transcribed in Chichewa then translated into English. We thematically analyzed the data using Dedoose software.

Results:  Six key themes were generated from the study: (1) Interaction between patients/clients and healthcare workers; (2) Opportunities and threats to service delivery; (3) Agility/Reliability of PC services; (4) Perceived program structure; (5) Facility responsiveness to patient’s needs; and (6) COVID-19 and palliative care.

Overall services were viewed positively. Individual narratives illustrated compassionate and responsive care, with the patient at the center. Acts of compassion appeared to be expressed through the ‘little things’ healthcare workers could do for patients.  Most patients liked that they now traveled a shorter distance to seek the same care they would receive at a secondary-level health facility.

Conclusion: Neno Palliative Care Program successfully decentralized its services to peripheral health facilities, according to patients receiving palliative care and their providers, although it requires more support. The study offers valuable information on how to decentralize the PC services to primary health facilities, benefiting program planners, resource allocators, and implementers for further scale-up processes.

Introduction: 

Bhutan, a tiny Himalayan Kingdom of 800,000 people, has virtually no palliative care. Our research aimed to develop a socially, culturally and spiritually appropriate palliative care model for Bhutan. 

Methods: 

A multi-method research program. In Phase 1, an integrative literature review explored palliative care models utilizing public health strategies in lower-income countries, describing how social, cultural and spiritual components were integrated. Needs for palliative care were assessed using surveys, in-depth interviews and focus groups among patients with advanced illnesses, family members and healthcare professionals. In Phase 2, a Delphi consensus process developed a national framework for palliative care. 

Results:

The literature review found lower-income countries faced challenges integrating public health strategies, with few highlighting integration of socio-cultural and spiritual components into palliative care. 

A patient survey found low-moderate levels of functional support needs (physical, role, emotional, cognitive, social functioning); moderately high levels of symptom support needs (pain, fatigue, insomnia, loss of appetite); and high levels of financial support needs. Family members reported high needs around understanding illness, managing symptoms, providing personal care, and financial and legal issues. Support was needed in knowing what to expect into the future, whom to contact if the patient deteriorated, dealing with feelings and emotions, understanding and reflecting on their own beliefs and spirituality and getting practical home help. In-depth interviews among patients and families indicated an urgent need for palliative care.

Only 14% of healthcare professionals had any palliative care training, and overall awareness was low. 

The Delphi study demonstrated a high level of consensus (>80%) for the framework for palliative care in Bhutan. 

Conclusion:

We have developed a contextually appropriate palliative care model for Bhutan based on public health strategies and the contextual realities of the country.

Pain, other symptoms, and psychosocial distress are highly prevalent among patients with serious chronic diseases such as cancer and HIV/AIDS and significantly reduce the quality of life. Palliative care focuses on the relief of suffering of any kind including pain, other physical and psychological symptoms, social distress, and spiritual distress, and on maximizing the quality of life of patients and their families. For these reasons, palliative care is widely considered a human right that should be accessible to all. Yet it is rarely accessible in resource-limited settings such as Rwanda. Patients with advanced chronic illnesses typically are discharged from the healthcare system and return home with no follow-up when they are most likely to have severe or worsening symptoms, when they are most physically and socio-economically vulnerable, and when their families are under the most significant stress. With support from the Rwanda Biomedical Center, ACREOL will create a first-of-the-kind model palliative care district networks in Rwanda that are integrated into the government healthcare system, affordable, and thus both sustainable and scalable, and that measurably improve the quality of life of serious chronic illnesses. We propose to build on this foundation by completing and refining the first district palliative care networks and extending a new one in another district.