Approximately 18,000 patients annually in the United States are diagnosed with adenocarcinoma or squamous cell carcinoma of the esophagus. These patients have numerous and complex symptoms, including pain, dysphagia, malnutrition and psychological symptoms due to location of the tumor and required treatments, and patients benefit from a comprehensive approach to care to effectively support their physical, emotional and spiritual needs. Palliative care is a medical subspecialty that focuses on providing comprehensive care for patients with any kind of advanced or serious illness to allow them to live well and fully for as long as possible in the face of that illness. In recent years, palliative care has become more widely available to patients with esophageal cancer and this is beneficial for patients with esophageal cancer given the severity of symptoms and complexities of needs. Primary oncology providers should provide basic palliative care including symptom management and clear communication, and palliative care specialists can provide additional support to extend the care of the primary clinician and treat the advanced and complex physical and psychological symptoms, as well as engaging in advance care planning. This paper outlines the key components of high-quality palliative care, including advanced care planning, symptom management and psychosocial support.
OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer.
METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors.
RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead.
CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.
Background: Incorporating patient narratives into the electronic health record (EHR) is an opportunity to integrate patients' values and beliefs into their care and improve patient–clinician communication.
Objective: The study's aims were to (1) identify barriers and facilitators influencing the implementation of a cocreated patient narrative intervention and (2) assess the acceptability/usability of the patient's narrative from the perspective of key stakeholders—the patient and acute care bedside nurse.
Design: We used an implementation design using mixed methods.
Setting/Subjects: Twenty patients and 18 nurses were enrolled from five units in an acute care hospital.
Results: For patients, the narrative intervention provided an avenue to discuss and share how illness has impacted their life in psychological, social, and spiritual belief domains. For nurses, the ability to read the patient's narrative provided benefits that fostered improved communication and more connection with their patients. Despite successfully meeting recruitment targets, time was the largest barrier for patient and nurse participants. Overall, the nurse participants gave high ratings on most of the items on the System Usability Scale with one exception—EHR integration. The lack of EHR integration on the System Usability Survey corresponds with the nurses' stated desire for a prominent location of patient narratives in the EHR.
Conclusions: The patient narrative intervention was acceptable and usable for hospitalized patients and nurse participants. Our study demonstrates that a cocreated patient narrative intervention provides avenues for patients and nurses to connect despite being in hectic acute care settings.
Dependence on a health care system due to a serious illness often unsettles a perceived sense of safety and predictability. Beyond the individual's thoughts and feelings, illness also disrupts relationships, social and spiritual supports, financial stability, and trust in the health care systems to deliver quality and equitable care. Psychological, social, and cultural factors weave within the patient's developmental stage, family structure, financial security, and spirituality. As such, the ability to attend to these factors efficiently, effectively, and compassionately is a key component of the palliative care provided by all clinicians who care for the seriously ill. This Fast Fact offers clinical guidance in performing a psychosocial assessment for seriously ill patients.
BACKGROUND: Spiritual care is frequently cited as a key component of hospice care in Taiwanese healthcare and beyond. The aim of this research is to gauge physicians and nurses' self-reported perspectives and clinical practices on the roles of their professions in addressing spiritual care in an inpatient palliative care unit in a tertiary hospital with Buddhist origins.
METHODS: We performed semi-structured interviews with physicians and nurses working in hospice care over a year on their self-reported experiences in inpatient spiritual care. We utilized a directed approach to qualitative content analysis to identify themes emerging from interviews.
RESULTS: Most participants identified as neither spiritual nor religious. Themes in defining spiritual care, spiritual distress, and spiritual care challenges included understanding patient values and beliefs, fear of the afterlife and repercussions of poor family relationships, difficulties in communication, the patient's medical state, and a perceived lack of preparedness and time to deliver spiritual care.
CONCLUSIONS: Our study suggests that Taiwanese physicians and nurses overall find spiritual care difficult to define in practice and base perceptions and practices of spiritual care largely on patient's emotional and physical needs. Spiritual care is also burdened logistically by difficulties in navigating family and cultural dynamics, such as speaking openly about death. More research on spiritual care in Taiwan is needed to define the appropriate training, practice, and associated challenges in provision of spiritual care.
Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams.
Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems.
Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial-spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.
Objective: The research project addressed the need to support young adults with issues relating to sexuality and relationships though the development of guidance and standards for practice.
Methods: An action research project underpinned by an interpretivist qualitative framework. Participants were recruited to the project via three hospices in the UK. Data from four focus groups were analysed thematically using a process of constant comparison.
Results: Sixteen young adults with life-limiting or life-threatening conditions aged 21–33 years participated in the study. Three significant themes were identified: sexuality and the transition to adulthood, recognising the significance of sex and relationships, and realising sexual rights.
Conclusion: Sexuality and relationships play an important role in the transition to adulthood for people with life-limiting or life-threatening conditions living in the UK. While young adults with these conditions may have considerable support needs, it is important to balance this with the freedom to exercise choice and to make independent decisions. Sex negativity can have an adverse impact on the experiences of young adults and creates barriers. Improved ongoing access to sex education and the provision of enabling environments that afford privacy and safety are important to support young adults with sexuality and relationships.
Background: Fluid management is a clinical challenge in patients with end-stage renal disease (ESRD), especially among those who opted for conservative treatment. We initiated a comprehensive program of psychosocial interventions.
Objectives: To study the impact of this psychoeducational (Appropriate amount of intake, Self-efficacy, and Adherence [ASA]) program on symptom burden and acute admission rates related to fluid overload (FO) in this group of elderly ESRD patients attending renal palliative care outpatient clinic under our division.
Methods: All elderly (age >60 years) patients who were followed in our renal palliative clinic had one or more acute admissions related to FO during the first three months were identified and invited to participate in this program. The palliative care nurse assessed each pair of patient/caregiver before doctor consultation, documented the symptom burden by the Edmonton Symptom Assessment Scale, provided symptom advice with use of pamphlets, monitored fluid and drug compliance, and provided psychosocial-spiritual support. The patient symptom score, body weight (BW), and three month acute admission episodes were compared before and after psychoeducation interventions by paired t test.
Results: Data from 138 patients were analyzed. Of them, edema, shortness of breath, and insomnia occurred in 131 (95%), 67 (49 %), and 44 (32%) patients, respectively. A total of 125 patients (90.6%) had poor fluid/diet compliance, whereas 59 patients (42.7%) had poor drug compliance. The BW decreased significantly from 57.1 (12.8) kg at baseline to 52.5 (13.6) kg after three months of the ASA program. The acute admission rate related to FO dropped significantly from 7.6 episodes/patient/year to 6.4 episodes/patient/year.
Conclusion: Our data demonstrated that the ASA program could improve patient symptoms and reduce acute hospital admissions, and thus improve the overall patient wellbeing and reduce health care utilization. Further studies are required to delineate the efficacy of different components in this ASA program and how to enhance its delivery.
Introduction: Custody concerns are a major source of psychosocial distress among single parents with life-limiting illness. Although children are increasingly living in diverse household structures, the current health care system is not designed to meet the unique needs of single parents or nontraditional families. Patients with unaddressed custody concerns can experience psychological suffering during treatment and at the end of life. Lack of clarity and resolution regarding guardianship may also result in additional hardship for their grieving children.
Case Description: We present the case of a 36-year-old-female with metastatic breast cancer, who was the single mother of four children. Despite significant concerns about her children's well-being, the patient did not complete legal guardianship processes. She experienced immense distress at the end of her life due to an unresolved custody plan.
Discussion: This case demonstrates the need for addressing custody and guardianship concerns with seriously ill patients early in the illness trajectory. While clinicians need not become experts on custody and guardianship themselves, understanding the impact of custody concerns-and the barriers to their resolution-can substantially improve end-of-life care for patients and better equip surviving family for the changes that lie ahead.
Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 (U = 124.0, n1 = n2 = 20, mean rank1 = 24.30, mean rank2 = 16.70, z = -2.095, P = .036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 (U = 19.5, n1 = n2 = 20, mean rank1 = 29.52, mean rank2 = 11.48, z = -4.900, P < .0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.
Palliative care addresses the biopsychosocial and spiritual distress of people with critical and chronic illness. Depending on the trajectory of an illness, a social worker in an acute care setting may have a limited number of opportunities to engage in meaningful interaction with an emotionally distressed patient. The social worker is often faced with providing care to a patient who is having the dual experience of maintaining hope for medical improvement and anticipating loss. This article offers therapeutic practice skills needed by social workers to address the experience of anticipatory loss in an acute care setting. Brief psychodynamic and person-centered therapy, provided in combination, are highlighted as one method to explore a patient's feelings and wishes in the face of critical illness. Case-based vignettes illustrate how five open-ended questions help mitigate suffering and heighten a patient's sense of autonomy and self-worth.
OBJECTIVES: Psychosocial interventions that mitigate psychosocial distress in cancer patients are important. The primary aim of this study was to examine the feasibility and acceptability of an adaptation of the Mindful Self-Compassion (MSC) program among adult cancer patients. A secondary aim was to examine pre-post-program changes in psychosocial wellbeing.
METHOD: The research design was a feasibility and acceptability study, with an examination of pre- to post-intervention changes in psychosocial measures. A study information pack was posted to 173 adult cancer patients 6 months-5 years post-diagnosis, with an invitation to attend an eight-week group-based adaptation of the MSC program.
RESULTS: Thirty-two (19%) consented to the program, with 30 commencing. Twenty-seven completed the program (mean age: 62.93 years, SD 14.04; 17 [63%] female), attending a mean 6.93 (SD 1.11) group sessions. There were no significant differences in medico-demographic factors between program-completers and those who did not consent. However, there was a trend toward shorter time since diagnosis in the program-completers group. Program-completers rated the program highly regarding content, relevance to the concerns of cancer patients, and the likelihood of recommending the program to other cancer patients. Sixty-three percent perceived that their mental wellbeing had improved from pre- to post-program; none perceived a deterioration in mental wellbeing. Small-to-medium effects were observed for depressive symptoms, fear of cancer recurrence, stress, loneliness, body image satisfaction, mindfulness, and self-compassion.
SIGNIFICANCE OF RESULTS: The MSC program appears feasible and acceptable to adults diagnosed with non-advanced cancer. The preliminary estimates of effect sizes in this sample suggest that participation in the program was associated with improvements in psychosocial wellbeing. Collectively, these findings suggest that there may be value in conducting an adequately powered randomized controlled trial to determine the efficacy of the MSC program in enhancing the psychosocial wellbeing of cancer patients.
Background: Although community-based serious-illness care (CBSC) is an innovative care model, it is unclear to what extent CBSC addresses palliative care needs, particularly for those patients near death.
Objectives: To evaluate palliative care services of a CBSC program.
Design: Retrospective chart reviews.
Setting/Subjects: Patients enrolled in a CBSC program in central North Carolina.
Measurement: Descriptive statistics of palliative care needs and services, such as symptom management, psychosocial support, and advance care planning (ACP), for survivors and decedents.
Results: Patients were seen in an 18-month time frame (n = 159). Mean enrollment in the program was 261.1 days (standard deviation 180.6). Patients' average age was 70 years, 56% were female, and 33% were black. Patients' most frequent comorbidities were dementia (32%), heart failure (32%), and diabetes (28%). Fifty patients (31%) died during the study period. Clinicians most frequently screened for pain (70%), constipation (57%), and dyspnea (57%). Of those screened positive, clinicians most frequently treated pain (92%), anxiety (84%), and constipation (83%). Among the 54% who screened positive for psychosocial distress, 82% received support. Clinicians screened 22% for spiritual needs; 4% received spiritual care. Among decedents, 66% were enrolled in hospice; 14% died in in-hospital. Decedents were more likely than survivors to have ACP (34% vs. 18%, p = 0.03) and a primary goal of comfort (40% vs. 12%, p < 0.01).
Conclusions: A CBSC program provided palliative care services comparable with other home-based palliative care programs. Although the CBSC program does not address all domains of palliative care, it provided most with symptom management, psychosocial support, and ACP.
INTRODUCTION: Despite being one of the most avoided topics of all time, death is a guaranteed eventuality for us all. However, quality psychosocial care as death approaches is not a guarantee. Where people reside is likely to impact a person's accessibility to quality psychological, emotional, social, spiritual and cultural support. Structural forces such as funding and resourcing will also be a contributing factor. Social workers have specific expertise in the psychosocial domain, yet enablers and inhibitors to social work referrals to support terminally ill clients in rural and remote communities have not been well explored. This study had two primary aims: to investigate the provision of psychosocial care for palliative clients in rural Australian communities and to identify barriers and facilitators of social work referrals to address psychosocial concerns for palliative care clients.
METHODS: Qualitative interviews were conducted with 38 rural participants across 24 rural and remote communities in the state of Queensland, Australia. The researcher travelled 7500 km to conduct these interviews over a 5-week period. The Rural, Remote, Metropolitan Areas classifications provided guidance on determining which communities would be considered regional, rural or remote communities. To explore the aims of the study, four participant groups were selected to participate in semi-structured qualitative interviews: group 1, social workers; group 2, community health nurses; group 3, community workers; and group 4, palliative clients/carers. For a comprehensive analysis, it was important to not only hear the views of those addressing psychosocial needs, but also include the voices of those receiving psychosocial care, resulting in all perspectives being captured. A thematic analysis was utilised, from which prominent, recurring themes were identified to form the basis for recommendations for future psychosocial care provision.
RESULTS: Findings revealed that psychosocial needs for terminally ill clients were addressed in an ad-hoc, inconsistent manner across rural and remote Queensland. Eligibility and access for palliative care program funding impacted service delivery and what support could be provided. Furthermore, social workers were limited in what they could offer due to the vast geographical distances, which inhibited quality face-to-face interventions and the capacity to address urgent psychosocial concerns. This resulted in community nurses assuming the role that social workers would usually undertake in more urban settings. In communities where a generalist social worker was employed, referrals were often impacted by the perceptions of other professionals of social work competencies. Finally, the results highlighted that a disparity exists between the perspectives of palliative care clients and their caregivers and understanding of healthcare professionals of what were identified as important psychosocial concerns.
CONCLUSIONS: Palliative care funding in Queensland is insufficient to effectively address the existing demand. Resourcing for rural and remote palliative care in Queensland is inadequate to ensure holistic and quality approaches to psychosocial care in the end stages of life. Increased resourcing would result in better care, for longer time frames throughout a disease trajectory. Education and training for health practitioners to address skills and competencies in psychosocial care for terminally ill clients is a recommendation for professional development. Furthermore, there is a need for social work to develop national standards and competencies to enhance practitioner confidence to efficiently address psychosocial concerns for terminally ill clients. Whilst this study was undertaken in Queensland, Australia, the findings are echoed in other international rural communities.
Canuck Place Children’s Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians’ perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians’ perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy’s potential role in the support of children, families, and staff within a hospice setting.
Although suffering in palliative care has received increasing attention over the past decade, the psychological processes that underpin suffering remain relatively unexplored.
Objective: To understand the psychological processes involved in the experiencing of suffering at the end phase of life.
Methods: Semistructured interviews were conducted with 20 palliative care inpatients from an academic medical centre in Kuala Lumpur, Malaysia. The transcripts were thematically analysed with NVIVO9.
Results: 5 themes of psychological processes of suffering were generated: (1) perceptions, (2) cognitive appraisals, (3) hope and the struggles with acceptance, (4) emotions and (5) clinging. A model of suffering formation was constructed.
Conclusion: The findings may inform the development of mechanism-based interventions in the palliation of suffering.
The study sought to explore bereavement rituals and their related psychosocial significance in an African cultural setting. A descriptive phenomenological design was adopted. Fourteen adults were purposefully sampled to participate in in-depth interviews. Data were analyzed using Hycner’s adapted phenomenological method, which resulted in four themes: (a) the cleansing ritual ceremony/go-ntšha setšhila, (b) ancestor reverence rituals, (c) rituals for protecting the deceased spirit, and (d) vengeance ritual/letswa. Ritual performance is associated with diverse psychosocial benefits including the prevention of a culture-specific bereavement illness. Essentially, ritual performance is for healing in that it lessens bereavement from becoming disabling.
Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.
OBJECTIVE: To investigate, from the perspective of women and partners, at what stage of a termination of pregnancy (TOP) for foetal anomalies psychosocial care (PSC) is most meaningful, what topics should be discussed, and who should provide PSC.
METHOD: A cross-sectional retrospective cohort study was conducted with a consecutive series of 76 women and 36 partners, who completed a semi-structured online questionnaire.
RESULTS: Overall, women expressed a greater need for PSC than their partners. Parents expressed a preference for receiving support from a maternal-foetal medicine specialist to help them understand the severity and consequences of the anomalies found and to counsel them in their decision regarding termination. Parents showed a preference for support from mental healthcare providers to help with their emotional responses. Forty-one percent of the women visited a psychosocial professional outside of the hospital after the TOP, indicating a clear need for well-organised aftercare.
CONCLUSION: Different disciplines should work together in a complementary way during the diagnosis, decision-making, TOP, and aftercare stages. Parents' need for PSC should be discussed at the beginning of the process. During aftercare, attention should be paid to grief counselling, acknowledgement of the lost baby's existence, and possible future pregnancies.
CONTEXT: Postloss depressive-symptom trajectories are heterogeneous and predicted by preloss psychosocial resources, but this evidence was from one old study on terminal cancer patients' caregivers for whom these issues are highly relevant.
OBJECTIVES: To identify depressive-symptom trajectories among cancer patients' bereaved caregivers and examine if they are predicted by preloss psychosocial resources while considering caregiving burden.
METHODS: Preloss psychosocial resources (sense of coherence [SOC] and social support) were measured among 282 caregivers. Depressive symptoms were measured by the Center for Epidemiological Studies-Depression [CES-D] scale 1, 3, 6, 13, 18, and 24 months postloss (CES-D scores >16 indicate severe depressive symptoms). Distinct depressive-symptom trajectories and their predictors were identified by latent-class growth analysis.
RESULTS: We identified five depressive-symptom trajectories (prevalence): endurance (47.2%), resilience (16.7%), transient-reaction (20.2%), prolonged symptomatic (11.7%), and chronically distressed (4.2%). Over 2 years postloss, the endurance group never experienced severe depressive symptoms. Severe depressive symptoms lasted 6, 7-12, and 18 months for the resilience, transient-reaction, and prolonged-symptomatic groups, respectively. The chronically distressed group's severe depressive symptoms persisted. The endurance and chronically distressed groups had the best and weakest psychological resources, respectively. Endurance-group caregivers perceived the greatest social support, whereas the resilience and transient-reaction groups had higher social support than the prolonged-symptomatic group.
CONCLUSIONS: Most (84.1%) caregivers' depressive symptoms subsided within 1-year postloss. Preloss psychosocial resources predicted depressive-symptom trajectories for bereaved caregivers. Healthcare professionals can help caregivers adjust their bereavement by providing support to enhance their SOC and encouraging social contacts while they are providing end-of-life care.