To the Editor,
As interprofessional palliative care clinicians and scientists, we identify shared experiences among patients and their families across the lifespan. Nonetheless, those of us focused on caring for children and those focused on adults often operate independently in separate silos (Fig. 1). As a result, the field may be missing valuable opportunities to synergize perspectives and efforts where there are commonalities, such as identifying caregiver needs and ways to intervene, navigating prognostic uncertainty, and making decisions around supportive technologies. Intentional collaboration among researchers working at specific junctures along the lifespan has the potential to facilitate cross-pollination and fruitful work throughout the field.
Fig. 1.
Palliative care across the lifespan.
At the American Association of Hospice and Palliative Medicine’s State of the Science Meeting in March 2024, in Phoenix, Arizona, a RAPiD (Rapid Abstract Poster Discussion) poster session was held focused on “Caring for Children, Families, and Ourselves”. The 2-hour session, featuring 23 researchers from medicine, nursing, and psychology, included three components: 1) concise, rapid (one-minute) presentations from each researcher highlighting research across the lifespan; 2) a traditional poster session featuring each of the 23 presenters next to their scientific posters, engaging in informal conversation with other session attendees; and 3) a facilitated large-group discussion with presenters and other attendees, identifying common themes, challenges, strategies, and future directions across presented studies. We used content analysis of fieldnotes from the session to qualitatively evaluate the discussion and identify ideas for collaboration among palliative care researchers across the lifespan.
Presented studies focused on the care of neonates, children, adolescents and young adults (AYAs), and older adults. Studies ranged from broad investigations (i.e., all children receiving palliative care) to more focused inquiry in specific disease groups (e.g., children or AYAs with cancer; adults with dementia, Parkinson’s Disease, and heart disease). Participants shared a wide array of research tools and methods, including statistical analyses of large data sets, qualitative analyses, mixed methods, surveys, and artificial intelligence-based approaches. Over half of participants described some stage of intervention development, with many incorporating novel therapeutic, presentation, and methodologic ideas, such as storytelling through music, digital narrative expressive arts, use of infographics, and ethnographic observation.
The discussion highlighted several areas for future focus, including fostering conversations and collaborations across the lifespan - from perinatal through geriatric care. It underscored the importance of implementation science to adapt and apply novel interventions in clinical settings and emphasized the need to consider positive and strengths-based over deficit-based outcome measures. Additionally, participants noted the importance of research in driving policy change to enhance caregiver support across all life stages and on centering on the margins and prioritizing equity to identify individuals or groups that may require additional support.
The findings from this RAPiD session are important because they (1) offer guidance for how to move palliative care research forward as an integrated field comprised of researchers studying various points across the lifespan, (2) help to identify cross-cutting strengths and challenges with specific methodologies (as well as ideas for overcoming those challenges), and (3) bring into focus issues of measurement and outcome assessment. We present opportunities for collaboration, derived from our RAPiD session discussion, as outlined in Table 1. New funding opportunities in palliative care aim to support research spanning perinatology through aging. We must forge collaborations to improve the care experience for seriously ill people, their families, and the clinicians who care for them across all stages of life. Creating opportunities for researchers working in palliative care across the lifespan to come together to cross-pollinate ideas and combine efforts to tackle common challenges is essential.
Table 1.
Questions for Collaboration in Palliative Care Across the Lifespan
| Topic | Questions |
|---|---|
| Applicability of findings and tools at multiple timepoints | How can exploratory research at one point along the lifespan (e.g., NICU discharge) inform intervention development and testing at another point (e.g., aging adults with dementia)? |
| How can modalities of artistic expression be taught or offered to facilitate expression of and response to distress, and how do such tools apply to multiple timepoints across the lifespan? | |
| How do experiences of isolation across the lifespan – bereavement, loneliness, widowhood, and others – synergize and/or diverge from each other? How does the comparison affect our understanding of what interventions may be effective to mitigate social isolation? | |
| What does interprofessional collaboration add at various points throughout a lifetime, and should it be structured in the same way across the lifespan? | |
| Areas of inquiry | Which groups of patients and families should receive palliative care interventions? When – along their illness trajectory – do they benefit from palliative care? How is this consistent across the lifespan, and how does it change at different timepoints? |
| What characterizes palliative care at different timepoints across the lifespan? What language do we use to describe palliative care? | |
| How do we transition among palliative care clinicians as patients move through their lives? | |
| Research methods | What strategies for research participant recruitment (especially targeting historically marginalized and minoritized groups) might be effective across the lifespan? |
| How do we incorporate psychology and social science into research to measure the impact of psychological and socioeconomic forces on patients and families? How might we learn from this at one point along the lifespan in a way that applies to other points? | |
| How do social determinants of health and other social, political, and economic forces affect access to high quality palliative care the same or different at different stages? |