Palliative Care Support Research Articles

The Human Rights of Older People With Mental Health Conditions and Psychosocial Disability to a Good Death and Dying Well

The human right to a good death and dying well is as important as the right to life. At stake at the end of life are human rights to dignity, autonomy, self-determination and respect for will and preferences, equitable access to quality health care that is needs-based, and respect for family and relationships. Older people with dementia, those with serious mental illness, and those with intellectual disability are vulnerable to “bad deaths” due to violations of these rights. In this paper we explore why this is so and examine existing and potential solutions. A human rights-approach to end-of-life care and policy for older persons with mental health conditions and psychosocial disability is one that is needs-based, encompassing physical and mental health, palliative care, social, and spiritual support services provided in the context of inclusive living. Most importantly, end of life care must be self-determined, and not “one size fits all.” An important remedy to existing violations is to strengthen human rights frameworks to cater specifically to older persons’ needs with a UN convention on the rights of older persons. Finally, as health professionals we have important contributions to make at the coalface by accepting our responsibilities in the area of death and dying. With the concept of the palliative psychiatrist gaining traction and recognition that death is our business, we add that human rights is also our business.

MO171BARRIERS TO RENAL SUPPORTIVE CARE IN SINGAPORE: A SURVEY BASED STUDY OF NEPHROLOGISTS, GERIATRICIANS AND PALLIATIVE PHYSICIANS

Abstract Background and Aims Renal supportive care is a patient-centred approach to management of advanced chronic kidney disease, especially in elderly patients. Adoption of renal supportive care in Asian countries has been slow. This study aims to investigate the barriers towards renal supportive care as perceived by physicians in Singapore. Method An online survey was sent out to all practising and training nephrologists, geriatricians and palliative physicians in Singapore public hospitals between October 1st and October 30th 2020. Responses were compiled and analysed. Results Out of 365 surveys sent, 75 nephrologists, 43 geriatricians and 28 palliative care physicians responded, accounting for a 40% response rate. Most of the participants managed 16 to 30 chronic kidney disease patients in a week. Older patients aged >75 years accounted for at least 30% of the chronic kidney disease cohort managed by 72% of respondents. Most agreed that renal supportive care aims to improve quality of life in chronic kidney disease (97.9%) and can be implemented alongside life-prolonging treatments such as dialysis (83.6%). However, only 51.4% recognised a distinction between renal supportive care and palliative care. Fewer nephrologists compared to geriatricians received prior palliative care training (54.7% vs 93.0%) or were certified advanced care planning facilitators (33.3% vs 67.4%). All respondents agreed that nephrologists should be aware of basic principles of palliative care, and 89.7% felt that palliative care should be incorporated into nephrology training. Most were comfortable holding discussions regarding dialysis withholding and withdrawal (93.8% and 87.7% respectively), and managing symptoms of pain (74.7%), breathlessness (87.0%) and anticipated symptoms after dialysis withdrawal (78.8%). Fewer physicians were comfortable with managing symptoms of pruritus (65.1%) and restless legs syndrome (56.2%). Majority (60%) did not feel confident in providing spiritual support as part of end-of-life care. Main barriers to renal supportive care included inadequate time during clinic consults to address the patients’ needs (87%), reliance on family members to make decisions (69.2%), inadequate palliative training during fellowship (67.1%) and inadequate community support services (55.5%). Some cited lack of awareness and acceptability of renal supportive care amongst patients and relatives in Singapore’s Asian cultural context. Most felt that encouraging advanced care planning discussions earlier in the course of chronic kidney disease (80.8%), having dedicated renal supportive care services in hospital (78.1%) and including palliative care rotation as part of training (69.2%) could potentially increase uptake of renal supportive care in Singapore. Conclusion Nephrologists, geriatricians and palliative physicians in Singapore recognise the value of renal supportive care, but are faced with barriers such as patients’ and family’s resistance toward renal supportive care as well as inadequate palliative training. A unique model of renal supportive care with the patient as well as family’s involvement early in the decision-making process is likely to be better perceived in Asian countries. Incorporation of palliative care training in the nephrology fellowship curriculum should be considered.

¿La intervención de atención primaria influye en el lugar de fallecimiento de los pacientes en un programa de cuidados paliativos?

ObjectivesTo determine whether there is a link between the place of death and the type of health-care provider: Primary Healthcare Team (PHT), Home Palliative Care Support Team (HPCST), or both. To identify other variables that may affect the place of death. Design of studyDescriptive, observational, retrospective study. SettingThree primary care center, Dirección Asistencial Sureste, Comunidad de Madrid (Madrid, Spain). ParticipantsPatients over the age of 18 with an A.99.01 episode (patient palliative care supports) according to coding CIAP2, active in their electronic medical record (AP-Madrid) from January 2016 until December 2018 (n=499). Two hundred and twenty four (224) patients did not meet the inclusion criteria. Main measurements and resultsTwo hundred and seventy five (275) patients were included. Their average age was 78. Eighty point four (80.4%) (n=221) patients had oncologic disease. Sixty seven point six (67.6%) (n=186) lived in an urban setting. There were significant differences (P<0.0001) between the place of death and the type of health-care provider team. Death occurred at home for: 23.1% (n=6) patients in follow-up by PHTs, 14.5% (n=10) patients in follow-up by HPCSTs, and 29.4% (n=53) patients in joint follow-up; 20.8% (n=46) were oncologic patients and 42.6% (n=23) were non-oncologic patients; 26.5% (n=63) had a main caregiver and 16.2% (n=6) didn’t. Death occurred at home for 34.8% (n=31) of rural setting patients and for 20.4% (n=38) of urban setting patients (P<0.007). ConclusionsResults support a higher percentage of deaths at home with joint follow-up.

The fear of cancer progression and recurrence in patients with pancreatic cancer.

4132 Background: Patients with pancreatic cancer run a considerable risk of disease progression or, after resection, disease recurrence, ultimately leading to death. Therefore, it is plausible that pancreatic cancer patients experience fear of cancer recurrence or progression (FOP). The aim of this study was to compare FOP in patients with pancreatic cancer treated with surgery, palliative systemic treatment or best supportive care (BSC), and examine the association between quality of life (QoL) and FOP and between FOP and overall survival (OS), respectively. Methods: This prospective multicenter cohort study included patients diagnosed with pancreatic cancer between 2015 and 2018, who participated in the Dutch Pancreatic Cancer Project (PACAP). Data on FOP (worry of cancer progression scale [WOPS]) and QoL (EORTC QLQ-C30 summary scale score), were obtained from the PACAP database. Data regarding patient and tumor characteristics were derived from the nationwide Netherlands Cancer Registry. The association between QoL and WOPS was assessed with logistic regression analysis. OS was evaluated using Kaplan Meier curves with log-rank test and multivariable Cox proportional hazard analyses. Results: In total, 315 patients were included, of whom 111 patients underwent surgery, 138 received palliative systemic treatment, and 66 BSC. WOPS scores tended to decrease and stabilize over time in all subgroups. Patients who underwent surgery had significantly lower WOPS scores (i.e. less FOP) at initial diagnosis compared to patients in the palliative systemic treatment and BSC group (p = 0.004). Higher QoL scores were independently associated with a lower probability of high WOPS scores in patients receiving BSC only (OR 0.95, P = 0.006). Baseline WOPS score was not independently associated with OS. Conclusions: Pancreatic cancer patients reported FOP at diagnosis, which decreased and stabilized over time. Given the distress that FOP evokes, FOP should be explicitly addressed by health care providers when guiding pancreatic cancer patients through their treatment trajectory, especially those receiving palliative treatment or BSC.

Burden of in-hospital care in oesophageal cancer: national population-based study.

BackgroundOesophageal cancer management requires extensive in-hospital care. This cohort study aimed to quantify in-hospital care for patients with oesophageal cancer in relation to intended treatment, and to analyse factors associated with risk of spending a large proportion of survival time in hospital.MethodsAll patients with oesophageal cancer in three nationwide registers over a 10-year period were included. In-hospital care during the first year after diagnosis was evaluated, and the proportion of survival time spent in hospital, stratified by intended treatment (curative, palliative or best supportive care), was calculated. Associations between relevant factors and a greater proportion of survival time in hospital were analysed by multivariable logistic regression.ResultsIn-hospital care was provided for a median of 39, 26, and 15 days in the first year after diagnosis of oesophageal cancer in curative, palliative, and best supportive care groups respectively. Patients receiving curatively intended treatment spent a median of 12 per cent of their survival time in hospital during the first year after diagnosis, whereas those receiving palliative or best supportive care spent 19 and 23 per cent respectively. Factors associated with more in-hospital care included older age, female sex, being unmarried, and chronic obstructive pulmonary disease.ConclusionThe burden of in-hospital care during the first year after diagnosis of oesophageal cancer was substantial. Important clinical and socioeconomic factors were identified that predisposed to a greater proportion of survival time spent in hospital.

Food as Love: Ethical and Moral Dilemmas in Withdrawal of Artificial Nutrition and Hydration in the Minimally Conscious State.

Supportive Palliative Care and Hospice professionals frequently attend to Minimally Conscious State (MCS) patients near the end of life and in so doing, face decisions over maintenance or withdrawal of artificial nutrition and hydration. Although both withholding and withdrawal of artificial nutrition and hydration (ANH) in such circumstances are considered by experts in ethics and law to be acceptable, not all families nor health care professionals agree. This paper will explore basic aspects of serious brain injuries, especially MCS, the psychological role of food in interpersonal relationships, and lessons from clinical ethics that can help in goals of care discussions about withdrawal of ANH.

Will the Emergence of the More Highly Infective Mutant Strains of SARS‐Cov‐2 Impose a Greater Strain on Health Care Professionals in 2021?

Provision of responsible healthcare to patients by healthcare professionals (HCP) during the COVID‐19 pandemic has lead to the development of symptoms of stress, anxiety, fear, and other strong emotions that has predisposed HCP to significant potential for mental health diagnosis including Post Traumatic Stress Disorder (PTSD). In a metanalysis, Mealer et al (2009) and others reported that how one copes with these emotions and stressful conditions may affect the quality of healthcare provided to others, and the well‐being of the people they care about both within and outside of their work environment. The recent emergence of more highly infective mutations of SARS‐CoV‐2 [COVID‐19], identified as SARS‐CoV‐2 VUI 202012/01 in the USA with a reportedly 50‐70% greater contagious potential than the novel strain has sparked great concern throughout Europe, the United Kingdom and the USA, resulting in both International and Domestic travel limitations attempts to slow the continued spread of the coronavirus pandemic in attempts to contain the mutations, albeit it unsuccessful so far. PTSD and other mental health disorders may develop in individuals following exposure to a traumatic event or ongoing circumstances as has occurred among healthcare workers in the current pandemic as well as among returning combat veterans and disaster stricken regions and may be a precipitating cause of PTSD among HCPs and may contribute to their symptoms following prolonged exposure to their seemingly unending and highly stressful patient care responsibilities, and which symptoms may escape observation by others similarly affected in the treatment chain. The results of this metanalysis study indicate that according to Tang et al (2017), healthcare providers that were exposed to Avian Influenza virus (H7N9) patients were significantly prone (p=<0.05) to developing severe anxiety, PTSD stress and burnout symptoms, indicating a need for greater pre‐exposure training in traumatic illness stress management to better prepare them for early‐stage career management, particularly during the early stages of their careers. The recent emergence of SARS‐CoV‐2 VUI 202012/01 and more recent variants, potentially 50% or more contagious strains of the SARS‐CoV‐2 virus with as yet unknown risks for morbidity and mortality particularly among smokers may pose such a threat among the general population and the among the HCP who may be tasked for their healthcare, wellbeing, and all to often, palliative supportive care, despite the best efforts of epidemiologic surveillance and containment via application of conventional public health measures and available resources.

Audit of Psychosocial and Palliative Care Support for Children Having Allogeneic Stem Cell Transplants at the New Zealand National Allogeneic Transplant Centre.

Psychosocial and palliative care support during stem cell transplants (SCT) is known to improve outcomes. Aim: evaluate the support provided to children and families at the New Zealand National Allogeneic Stem Cell Transplant unit (NATC). Method: the psychosocial and palliative care support for children who received SCT between December 2012 and April 2018 was audited. Results: of the 101 children who received SCT, 97% were reviewed by the social work team (SW) and 82% by the psychiatric consult liaison team (CLT) at least once during their illness. However, pre-transplant psychological assessment only occurred in 16%, and during the SCT admission, only 55% received SW support, and 67% received CLT support. Eight out of eighty-five families (9%) were offered support for siblings. Eight of the sixteen children who died were referred for pediatric palliative care (PPC) with all supported and half the families who experienced a death (n = 8; 50%) received bereavement follow up. Conclusion: although the majority received some social work and psychological support, auditing against the standards suggests the consistency of involvement could be improved. Referrals for PPC were inadequate and largely for end-of-life phase. Sibling support, in particular donor siblings, had insufficient psychological assessment and support. Key recommendations are provided to address this underperformance.

Critical Care Outreach Team During COVID-19: Ventilatory Support in the Ward and Outcomes.

During the coronavirus disease 2019 (COVID-19) outbreak, a critical care outreach team was implemented in our hospital to guarantee multidisciplinary patient assessment at admission and prompt ICU support in medical wards. In this paper, we report the activity plan results and describe the baseline characteristics of the referred subjects. We retrospectively evaluated data from 125 subjects referred to the critical care outreach team from March 22 to April 22, 2020. We considered subjects with a ceiling of care decision, with those deemed eligible assigned to level 3 care (ward subgroup), and those deemed ineligible admitted to the ICU (ICU subgroup). Quality indicators of the outreach team plan delivery included number of cardiac arrest calls, number of intubations in level 2 areas, and ineffective palliative support. We enrolled 125 consecutive adult subjects with a confirmed diagnosis of COVID-19. We did not report any emergency endotracheal intubations in the clinical ward. In the care ceiling subgroup, we had 2 (3.3%) emergency calls for cardiac arrest, whereas signs of ineffective palliative support were reported in 5 subjects (12.5%). Noninvasive forms of respiratory assistance were delivered to 40.0% of subjects in the ward subgroup (median 3 d [interquartile range (IQR) 2-5]), to 45.9% of subjects in the care ceiling subgroup (median 5 d [IQR 3-7]), and to 64.7% of subjects in the ICU subgroup (median 2.5 d [IQR 1-3]). Thirty of the 31 ward subjects (96.7%), 26 of the 34 ICU subjects, (76.4%), and 19 of the 61 ceiling of care subjects (31.1%) were discharged. In the context of a hospital and ICU surge, a multidisciplinary daily plan supported by a dedicated critical care outreach team was associated with a low rate of cardiac arrest calls, no emergency intubations in the ward, and appropriate palliative care support for subjects with a ceiling of care decision.

Current Grief Support in Pediatric Palliative Care.

Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.

The end-of-life trajectory in childhood cancer: Bereaved parents’ perceptions of the availability, use, and helpfulness of support services

Abstract Background: The provision of bereavement support for parents is a recognized tenet of end of life (EoL) care, yet there is a knowledge gap concerning how and when health care providers can best provide this. To better understand bereaved parents’ perspectives, the present study examined what supportive interventions parents reported to be available, utilized, and found helpful based on their experiences at the medical institution where their child received care. They also identified the types of supportive interventions they felt were needed both before and after the death of their child and when along the cancer trajectory parents felt these services should be made available. Methods: Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey through a closed social media (Facebook) group. The survey was developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates. The survey was designed to gather retrospective reports of EoL support services offered and utilized. Descriptive information about reports of services available, services utilized, and services found to be helpful is reported. χ 2 analyses were utilized to compare availability, utilization, and helpfulness by cancer type and child's age at death. Results: One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. Most reported their care institutions to have availability of palliative care support (67.4%, n = 91), spiritual/religious support (n = 83, 61.9%), resource materials (n = 82, 60.7%), counseling for the child (n = 82, 59.0%), and advance care planning (n = 65, 50.0%). All parents who utilized assistance with food/beverages at bedside, funeral planning and legacy building found it to be helpful, with other services (ie, palliative care, advance care planning, counseling for child/family, among others) also rated as highly helpful (&gt;75%). Most bereaved parents perceived a need for supportive interventions, particularly during the EoL experience, whereas about half reported a desire for services after the death of their child. Bereaved parents felt these services should be offered to the entire family, including the patient. Some services (eg, supportive counseling for parents, child, and siblings) were desired from diagnosis onward, whereas others (eg, advance care planning, discussions of location of death) were preferred if the disease was not responsive to treatment. Thematic analysis of open-ended responses of services that would have been helpful elicited a desire for treatment navigation, ongoing support/communication from the healthcare team, financial help, support for the child (both counseling and integrative therapies), meals, counseling (for the family and those impacted by the child's death in their community), legacy options, connection with other families, information about tissue donation, and grief support after the death of their child. Conclusions: Most bereaved parents utilized the supportive interventions provided to them by the healthcare team during their child's EoL care and reported finding them helpful. Additional services, not offered or available, were also desired, particularly during the EoL experience, and after the death of their child. These findings are consistent with guidance from evidence-based standards of care which promote early integration of palliative care and continuity of care after the death of a child. Provision of a variety of services may be beneficial to families both before and after their child's death, but additional research is needed to inform timing and how to best tailor these services to the family.

Exploring the acceptance of telehealth within palliative care: A self-determination theory perspective

The aim of this paper was to explore potential divergence and convergence in relation to health care professionals’ and patients’ acceptability of the use of telehealth within palliative care provision through the lens of Self-Determination Theory. The research utilized a deductive qualitative approach utilizing semi-structured interviews to explore divergence and convergence between health care professionals’ preconceptions of the use of telehealth in palliative care and the lived experiences of patients accessing support in this manner. Semi-structured interviews were conducted with both professionals and patients to explore whether the barriers and benefits of telehealth perceived by professionals corresponded to the patient’s lived experience of utilizing the technology in their palliative care. Interviews were analyzed using a deductive thematic analysis. Professionals and patients identified that the use of telehealth could satisfy the need for autonomy, however this manifested in different ways. Greater divergence was apparent between patient and professional perceptions about how telehealth could satisfy the need for relatedness and competence needs. The findings of this paper highlight how professionals preconceived concerns about the use of telehealth in relation to providing supportive palliative care may not be realized when exploring the experiences of patients accessing services through this medium. This paper highlights the important role of psychological need satisfaction when considering acceptability of telehealth, and motivation to engage in the implementation of technologically driven health services.

The self-perceived palliative care barriers and educational needs of clinicians working in hospital primary care teams and referral patterns: lessons learned from a single-center survey and cohort study.

Within the generalist-plus-specialist palliative care model, palliative care is mainly provided by nurses and physicians of hospital primary care teams. Palliative care consultation teams (PCCTs) support these clinicians in adequately caring for patients with advanced illnesses. Our team started in 2012. The aim of this study was to assess the self-perceived barriers, educational needs and awareness of available palliative care support options among our hospital primary care teams. In addition, palliative care referral patterns were evaluated. Single-center mixed methods study. Outcomes of two surveys of primary care team clinicians (2012 and 2016) on barriers to palliative care, educational needs and awareness of palliative care support options were compared (chi-square, Mann-Whitney U tests, qualitative analysis). Palliative care referral characteristics were evaluated (2012-2017), including referral timing (survival since referral) (descriptive statistics, Kaplan-Meier methodology). Predictions of survival at referral were analyzed (weighted Kappa). In 2012 and 2016, the most frequently reported barrier was the late initiation of the palliative care approach. Clinicians reported a need for education on physical symptom management and basic palliative care principles. Awareness of support options increased from 2012 to 2016, including improved familiarity with the PCCT (56% vs. 85%, P<0.001) and positive appraisal of the team (8% vs. 40% gave an 'excellent' rating, P<0.001). The use of national symptom management guidelines also improved (23% vs. 53%, P<0.001). Of 1,404 referrals, 86% were for cancer patients. Referrals increased by 28% (mean) per year. Medical oncology clinicians referred most frequently (27%) and increasingly early in the disease trajectory (survival ≥3 months after referral) (P=0.016). Median survival after referral was 0.9 (range, 0-83.3) months. Referring physicians overestimated survival in 44% of patients (kappa 0.36, 95% CI: 0.30-0.42). Primary care team clinicians persistently reported needing support with basic palliative care skills. PCCTs should continuously focus on educating primary care teams and promoting the use of guidelines. Because physicians tend to overestimate survival and usually referred patients late for specialist palliative care, consultation teams should support primary care teams to identify, treat and refer patients with palliative care needs in a timely manner.

Exploring paramedics’ intention to use a specialist palliative care telehealth service

A large proportion of expected deaths do not occur at home, despite often being the dying person’s preference. Paramedics play an integral role in hospital admissions when someone is close to death. As illness worsens, paramedics are often called and ascertain whether hospitalisation is appropriate. In a 12-month period, Ambulance Victoria (Australia) recorded 4348 palliative related callouts, 70% resulting in hospitalisation. Paramedics throughout the world recognise the need for extra palliative care training or support. One solution is a specialist palliative care support telehealth service from palliative specialists (usually in tertiary hospitals) to paramedics on call-outs to people with life-limiting illnesses. However, to maximise uptake and sustainability, it is prudent to examine factors that influence acceptance of such a service. In the current study, 112 paramedics employed by the Queensland Ambulance Service completed an online survey examining their Intention to Use the Specialist Palliative Care telehealth service as a function of the Technology Acceptance Model constructs (Perceived Usefulness, Perceived Ease of Use and Attitudes toward technology) and Palliative Care Self-Efficacy. After controlling for age, a hierarchical multiple regression analysis demonstrated the predictive utility of Perceived Usefulness and Attitudes. Palliative Care Self-efficacy did not add any significant variance to the model. This research highlights the importance of addressing paramedics’ perceptions regarding the telehealth service and its usefulness when implementing a similar service model.

Establishment of a research policy for supportive and palliative care in Japan.

BackgroundWhile several small groups in Japan have attempted to conduct prospective studies in the field of supportive and palliative care, development of exploratory research into multicentre confirmatory studies has been difficult. The main reason for this is the difference in clinical research methodology in supportive and palliative care compared with medical oncology in terms of the style of multidisciplinary approaches, study design and endpoints. Here, we establish a new research policy for cancer supportive and palliative care in Japan.MethodsThe first draft was developed by a policy working group within the Japanese Supportive, Palliative and Psychosocial Care Study Group. A provisional draft was subsequently developed after review by nine Japanese scientific societies (Japanese Association of Supportive Care in Cancer, Japanese Society of Medical Oncology, Japanese Society of Clinical Oncology, Japanese Society of Palliative Medicine, Japanese Society of Cancer Nursing, Japanese Society of Pharmaceutical Oncology (JASPO), Japan Cancer Association (JCA), Japanese Society of Therapeutic Radiation Oncology and Japanese Cancer Association) and receipt of public comments. The final research policy in the area of supportive and palliative care in Japan (Ver1.0) was completed in December 2018 and underwent its first revision (Ver1.1) in February, 2020.ResultsThe policy includes the following components of clinical research: (i) objective of the research policy in the areas of supportive and palliative care; (ii) definitions of supportive care and palliative care; (iii) characteristics of supportive and palliative care research; (iv) target population for research; (v) research design; (vi) endpoints and assessment measures; (vii) handling of the deaths of subjects and (viii) operational structure and quality management.ConclusionsWe hope that studies conducted according to this policy will play important roles in the future development of the supportive and palliative field.

Frailty and the need for palliative care.

The article discusses the condition of frailty and the consideration for palliative care support to frail individuals, particularly older adults. Also cited are the need for holistic assessment to achieve better advance care planning (ACP) with the patient, how palliative care is most effective in patients with complex and multiple symptoms, and how palliative care improves patients' quality of life and ensures dignity in dying.

Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal.

The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters. The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed. Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner-strengthening, recognition of parental skills, and promotion of self-efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope. To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope-based intervention to provide an evidence base from which to enhance the well-being of parental caregivers of children who have CCCs.

Challenges for palliative care day services: a focus group study

BackgroundPalliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams.MethodsA descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically.ResultsFour key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services’ effectiveness and value for money was highlighted.ConclusionsManagement and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

Palliative Care Needs and Integration of Palliative Care Support in COPD: A Qualitative Study

The provision of palliative care for severe COPD remains low, resulting in unmet needs in patients and carers. What are the palliative care needs of patients living with severe COPD and their caregivers? What views of accessing and providing palliative care and factors influence these experiences. To what extent have palliative care and COPD services been integrated? A multicentre qualitative study was undertaken in COPD services and specialist palliative care in the United Kingdom involving patients with severe COPD, their carers, and health professionals. Data were collected using semistructured interviews and were analyzed using framework analysis. Themes were integrated using the constant comparison process, enabling systematic data synthesis. Four themes were generated from interviews with 20 patients, six carers, and 25 health professionals: management of exacerbations, palliative care needs, access to palliative care and pathways, and integration of palliative care support. Uncertainty and fear were common in patients and carers, with identified needs for reassurance, rapid medical access, home care, and finance advice. Timely palliative care was perceived as important by health professionals. Palliative care was integrated into COPD services, although models of working varied across regions. Reliable screening tools and needs assessment, embedded psychological care, and enhanced training in palliative care and communication skills were perceived to be important by health professionals for timely palliative care referrals and optimized management. Palliative care increasingly is being implemented for nonmalignant diseases including COPD throughout the United Kingdom, although models of working vary. A theoretical model was developed to illustrate the concept and pathway of the integration of palliative care support. A standardized screening and needs assessment tool is required to improve timely palliative care and to address the significant needs of this population.

A Compassionate Communities Approach in a Grief and Bereavement Support Program: Bridging the Gap in Palliative Care

Grief and bereavement support is a fundamental component of palliative care, yet there is a gap in practice as not all palliative care services offer it. The compassionate communities (CC) approach aims to build community capacity to address grief as grief support is considered everyone's responsibility. This study describes the characteristics, development, growth and attendees of a grief support program that uses a CC approach to bridge the gap of grief support in palliative care.