Palliative Care and Social Practice

To contribute with knowledge to health policy development, this article presents a critical discourse analysis of two Norwegian official reports on palliative care published in 1999 and 2017.

We identify, describe and discuss how linguistic features in policy documents contribute to and engender a distinct change from 1999 to 2017 in how patients are framed, documenting the development of palliative care.

The analysis identifies and considers two interwoven discourses: the discourse of accountability and the discourse of complexity. The patient moves from being described as in need of care, in the 1999 report, to being described as an active and responsible patient making proper choices, in the 2017 report.

Result of this policy development might be less involvement of professionals and focus on existential questions, and more responsibility on patients for their prospective wellbeing and health: a change that we argue should be considered and counteracted in upcoming policy processes considering palliative care.

Caring for a family member can be demanding, particularly when caregivers experience profound distress. Supportive interventions may help prevent mental and physical illness in the caregiver. General practice plays a key role by regularly engaging with patients and caregivers, thereby being able to identify their support needs, offer talk therapy and refer to care initiatives.

This study aimed to develop and pilot-test the Caregiver Care Model to mitigate grief reactions among caregivers in general practice.

A participatory intervention development study.

A prototype was developed in a workshop with healthcare professionals. The prototype was refined based on a pilot-test among 40 caregivers from 5 general practice clinics and a workshop with general practitioners. The data were obtained from workshops, feedback questionnaires completed by healthcare professionals, and interviews with caregivers and general practitioners. The analysis focused on model development and mechanisms of impact.

The prototype was refined by focusing the dialogue questionnaire, minimising the grief facilitation tools and expanding the target group. The prototype seemed to accommodate the needs among caregivers by acknowledging their situation. The final model includes up to seven caregiver consultations in general practice. A dialogue questionnaire filled in by the caregiver serves as a fixed starting point and preparation for the first consultation. If needed, talk therapy in general practice or referrals to other services are used.

The model offers promising support for caregivers. Its flexible structure allows for customisation. The viability of the model should be further tested.

Culturally appropriate communication training programs for a wide range of professions that can be used during infection epidemics are crucial for advance care planning implementation. Starting in 2018, the Japanese Ministry of Health, Labour and Welfare made a major policy change, and doctors, nurses, and social workers, and care managers were identified in the guidelines as the professions that promote advance care planning. Motivated by the lack of online programs for Japanese care managers, we proposed a new one-day program.

This study aimed to determine the changes in the positive attitude of care managers toward dying patients compared to that of nurses, which has been used in past literature as an outcome of advance care planning educational interventions, after administering the program in Japan.

Before-after comparison study.

Care managers were recruited through our website, ACP-Piece, http://plaza.umin.ac.jp/~acp-piece/piece.html. A questionnaire survey concerning positive attitudes toward dying patients was administered before and after the program on 28 August 2021. Sixty-six subjects participated in the training and 60 participants, including 14 care managers, consented to the study and completed the questionnaire surveys before and after the program.

The Frommelt attitude toward care of the dying scores for care managers increased after the program (p-values, confidence intervals, and effect sizes: p < 0.001, −11.90 to −4.388, −1.252). After training, care managers had a significantly higher maximum score occurrence than nurses. Older care managers with advance care planning experience may have had a higher maximum score occurrence compared to younger, inexperienced participants.

To our knowledge, this is the first to demonstrate the increased positive attitude scores toward dying patients after online communication training for Japanese care managers. The limitations of this study include the lack of evidence regarding reasons for score changes, long-term score changes, and effectiveness for patients and their families.

As in life at large, ideas of ‘self’ underlie a great deal of theory and practice in palliative care and in bereavement care, they are frequently implicit, being part of shared cultural assumptions, but may assume a degree of theoretical abstraction when fostered by professionals. This article considers the latter, arguing for an interpretation of ‘self’ influenced by the anthropological notion of dividual or composite personhood and not for that of the autonomous, relatively insular individual typified in much postmodern culture.

After depicting both types of personhood, the article explores Western theories of grief typified in the approaches of attachment and loss, continuing bonds with the dead and narrative approaches to identity.

The dividual approach to personhood then drives a theoretical critique of those grief theories as a means of reflecting upon palliative and bereavement care.

This alignment of palliative and bereavement care is seen as an entailment of the dividual approach to personhood, while further consequences are raised for analysing memory, dreams and visitations of the dead, as well as providing a potential perspective upon memory loss and the dissonance experienced by relatives of someone who no longer recognizes them.

The Utrecht Symptom Diary—4 Dimensional (USD-4D), an adaptation of the Edmonton Symptom Assessment System, supports healthcare providers (HCPs) in identifying, monitoring, and exploring multidimensional symptoms and needs of patients in the palliative phase. For the USD-4D to be optimally implemented in clinical palliative care, it is essential to know and understand the needs of HCPs when using it.

To identify and interpret the needs of HCPs when using the USD-4D in clinical palliative care, operationalized as perceived facilitators and barriers.

An explanatory mixed-methods study with a sequential design.

Data were collected between October 2019 and September 2020. In phase I, quantitative data were collected through a survey targeting Dutch HCPs working in palliative care. Facilitators were identified as items answered positively by ⩾80% of participants, while barriers were identified as items answered negatively by ⩾20% of participants. In phase II, these identified facilitators and barriers were explored in depth through mixed composition focus groups. The Capability-Opportunity-Motivation-Behavior (COM-B) model was utilized to contextualize and interpret the perceived facilitators and barriers.

A total of 122 HCPs completed the survey, with 95% of the respondents being women with a mean age of 48 years and 72% being nurses. Additionally, 53% of the respondents had no prior experience with the USD-4D. In phase II, 21 HCPs participated in focus groups. 95% of the participants were women with a mean age of 49 years and 67% being nurses. HCPs pinpointed facilitators primarily related to the potential benefits of the USD-4D for daily patient care. Conversely, the identified barriers included issues related to HCPs’ behavior, knowledge gaps, uncertainty regarding their abilities and attitudes toward the USD-4D, and technical obstacles.

Facilitators and barriers across all facets of the COM-B model were recognized, with a notable emphasis on motivational barriers. It should be acknowledged that facilitators and barriers can evolve throughout the implementation process, underscoring the importance of viewing implementation and integration as fluid and continuous endeavors. Facilitators and barriers are closely linked to HCPs’ reflective capacities, emphasizing the need for tailored intervention strategies that align with different stages of USD-4D implementation.

With a large burden of suffering and death in 2020 due to COVID-19 in long-term care (LTC) homes resulting in restrictions of visitations, there is a need for a formal virtual intervention to support families/friends (i.e., care partners) and residents around palliative care, including planning for end-of-life when outbreaks like these occur. The LTC Palliative Toolkit includes informational resources for care partners, residents, and healthcare providers about the trajectory of life-limiting chronic illnesses (i.e., frailty, dementia, heart failure, kidney disease, lung disease) and Palliative Care Conferences (PCCs).

To evaluate the impact of the LTC Palliative Toolkit on preparedness for end-of-life and satisfaction with information and to explore the experiences of care partners and residents with the virtual delivery of the components of the LTC Palliative Toolkit (i.e., informational pamphlets and PCCs).

A multiple methods design was employed. Three LTC homes, one from each province (Ontario, New Brunswick, and Saskatchewan, Canada), were selected to reflect diverse contexts (e.g., ownership, staff turnover, facility size, and location). Caring Ahead surveys focusing on actions, dementia knowledge, communication, and emotions and support needs were conducted with care partners before and after PCCs to evaluate how prepared they felt about their relative or friend’s end-of-life and their satisfaction. Some care partners and residents completed telephone semi-structured interviews to explore their experiences with care received.

Survey findings revealed only one statistically significant improvement after the intervention period, an improvement in the emotion and support needs domain following PCCs, with baseline and follow-up mean scores of 6.08 (SD = 1.06) and 6.35 (SD = 1.16), respectively (p = 0.016). Qualitative interviews identified that the LTC Palliative Toolkit was a valuable intervention for both care partners and residents.

The LTC Palliative Toolkit is suitable for use in any context and demonstrated high acceptability during the COVID-19 pandemic.

Palliative care is an essential element of the healthcare system. It has profound benefits for patients with life-limiting illnesses. The Saudi Arabian healthcare system lags in integrating this vital component effectively. Hence, estimating the palliative care needs of the Saudi Arabian population is crucial to understanding the country’s demand for palliative care.

To assess the past trends in adult palliative care needs in Saudi Arabia.

The current research used population-based secondary data analysis by employing two palliative care needs estimation methods: the direct or fixed estimation method by Gómez-Batiste and the maximum or maximal method by Murtagh and Rosenwax. The estimated palliative care needs were stratified by gender.

An upward trend in the palliative care needs of the Saudi Arabian population is evident through the estimation techniques. The proportion of palliative care needs relative to deaths climaxed at 95% in the observed years. By 2022, the number of people requiring palliative care skyrocketed to 79,725 (fixed method) and 101,623 (maximal method).

The need for palliative care in Saudi Arabia substantially rose in the observed years. It is inevitable to bridge the gap between palliative care needs and supply with advanced integration of palliative care services in the national healthcare system.

The context of care determines and organizes practices through its structures and guiding principles. It is sometimes a space that generates tension and multiple choices, variable in the provision of different care and uncertain in its duration. We can consider that the construction of the comfort process does not only depend on the will of its actors and the situation itself, but is also conditioned by the professional, cultural, and social context in which it is inserted. This article is part of a doctoral study in the field of comfort in a palliative care unit, and these are some of the partial results that emerged.

Qualitative study using ethnographic approach.

We conducted semistructured interviews with 18 patients at the end of life and their matched significant family members (18) and 21 health professionals. We also conducted a participant observation of care situations.

The context of action, where meanings and practices are learned, is linked to a certain identity that is related to practical, contextual knowledge, linked to a collective and to a feeling of belonging. The relationship between the various factors that shape the Care Context in the palliative care unit studied, constitute the three domains of this topic, specifically: the integrative and inclusive environment, the conceptions of care, and the inclusive factors of organizational culture.

The specific context was determinant as a supporting axis for comfort in this palliative care unit. The context of care, where objects and provisions support the construction of the comfort process as an entity that integrates culture, established conceptions of care, allowing the deepening of knowledge.

Our intention was to develop a meta-understanding of the ‘human aspects’ of providing palliative care. Integral to developing this meta-understanding was recognising the individuality of people, their varied involvements, situations, understandings, and responses, and the difficulty in stepping back to get a whole view of this while being in the midst of providing palliative care. We intended for this meta-understanding to inform reflections and sense-making conversations related to people’s changing situations and diverse needs.

Using collaborative inquiry, this qualitative research was undertaken ‘with’ clinicians rather than ‘on’ them. Our team (n = 7) was composed of palliative care clinicians and researchers from a co-located rural health service and university. We explored our personal perceptions and experiences through a series of 12 meetings over 8 months. In addition, through five focus groups, we acccessed perceptions and experiences of 13 purposively sampled participants with a range of roles as carers and/or healthcare providers. Data were dialogically and iteratively interpreted.

Our meta-understanding of ‘human aspects’ of providing palliative care, represented diagrammatically in a model, is composed of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING. ATTRIBUTES OF HUMANITY are death’s inevitability, suffering’s variability, compassion’s dynamic nature, and hope’s precariousness. ACTIONS OF CARING include recognising and responding, aligning expectations, valuing relationships, and using resources wisely. The meta-understanding is a framework to keep multiple complex concepts ‘in view’ as they interrelate with each other.

Our meta-understanding, highlighting ‘human aspects’ of providing palliative care, has scope to embrace complexity, uncertainty, and the interrelatedness of people in the midst of resourcing, requiring, and engaging in palliative care. Questions are posed for this purpose. The non-linear diagrammatic representation of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING facilitates multiple ways of engaging and revisiting palliative care situations or navigating changes within and across them.

Social media influencers have revolutionized information, gaining viewers, retention, and interest with short videos. Medical teams could potentially benefit from this medium for educating patients. Defining success in this endeavor remains unclear.

We are a surgeon-nurse team that sought to promote our messages on social media to gain viewers and interest in our website.

An educational podcast focusing on end-of-life discussions was linked to social media platforms, including Instagram and TikTok, to gain views on our website.

Eleven podcast episodes were produced and published over a 3-month period, between November 2023 and January 2024. The podcast episodes were promoted to “similar clients” based on internal algorithms by a podcast streaming service, Spotify. The promotion provided by Spotify and website views were compared to responses evident by other social media posts.

After 3 months of publishing podcast episodes on Spotify, with free publicity, our podcast gained 10,400 promotions, 486 listeners, 49 followers, and approximately 1200 random website views. In comparison, the podcast content garnered more than 50,000 video clip views on TikTok and Instagram, after funding these brief video promotions. TikTok and Instagram both charged $20 or more per promotion. Paid promotion opportunities resulted in no website visits or podcast followers.

Our own experience with social media promotion was inadequate in generating interest in our content. The authors would encourage other teams to be strategic with paid promotions and to consider engaging a marketing expert to improve the potential for mass interest in content and promotional efficiency. Additionally, based on these findings, the authors would appreciate more transparency in the algorithms behind successful promotions to better understand “what success looks like” for medical messaging.

Advance care planning (ACP) is beneficial for the quality of death (QOD). However, the effects of ACP on the QOD may vary across cultures.

This study aimed to explore the relationship between the 15-step ACP program and the QOD among Japanese nursing home residents.

A cross-sectional survey.

A cross-sectional survey was conducted among the family members of 39 nursing home residents who died between April 2017 and March 2019 by distributing the survey questionnaire by post. The survey included questions about the QOD of residents, and responses were evaluated using the Good Death Inventory (GDI) scale.

Responses were obtained from 30 of the 39 bereaved families (76.9%). Data were analyzed using hierarchical clustering to determine five groups and conduct multiple comparisons. The following three domains of interest were identified: ‘Dying in a favorite place’, ‘Good relationship with the medical staff’, and ‘Independence’. GDI scores were significantly higher for residents with higher ACP completion rates than for those with lower rates (p < 0.01). Residents who had taken ACP interviews had significantly higher GDI scores (p < 0.01) than those who had not taken interviews.

Overall, these findings suggest that systematic ACP might be related to the QOD among Japanese nursing home residents in the above mentioned three domains. Limitations of the present study were small sample size, cross-sectional survey design as opposed to a cohort survey design, and multiple biases, including the emotional instability of bereaved family members, the length of stay of the residents, the degree of dementia of the residents, and their tendency to talk about the place of death and to develop good relationships with the medical staff.

Data from the core data set of the Hospice and Palliative Care Evaluation (HOPE) from 1999 to 2001 demonstrated considerable variance in the incidence of patients’ symptoms and problems between participating services. This paper aims to investigate these differences more closely.

During the evaluation period of HOPE in 2002 a telephone survey with a representative of each participating unit was performed. Telephone interviews assessed the professionals’ definitions of selected symptoms and estimates of problem and symptom incidences. Content analysis was used to evaluate qualitative answers.

Staff members rated pain, weakness, nausea/emesis as the most frequent physical symptoms; anxiety, depression and amentia as most frequent psychological symptoms; wound treatment, mobilisation and weakness as nursing problems and organisation of care settings, loneliness, demands of relatives the most common social needs. Staff members used a wide range of definitions for cachexia, weakness and depression.

Standard definitions of symptoms and problems were lacking in the articulation of subjective staff members’ perspectives. Meaningful evaluation of multicentre surveys would require training in symptom assessment and classification in order to produce a common basis for documentation. Even though definitions differed widely, underlying concepts seemed to be compatible.