Palliative Care Experience Research Articles

Nurse-led supportive Coordinated Transitional Care (CTraC) program improves care for veterans with serious illness.

The Coordinated Transitional Care (CTraC) program is a telephone-based, nurse-driven program shown to decrease readmissions. The aim of this project was to implement and evaluate an adapted version of CTraC, Supportive CTraC, to improve the quality of transitional and end-of-life care for veterans with serious illness. We used the Replicating Effective Programs framework to guide adaptation and implementation. An RN nurse case manager (NCM) with experience in geriatrics and palliative care worked closely with inpatient and outpatient care teams to coordinate care. Eligible patients had a life-limiting diagnosis with substantial functional impairment and were not enrolled in hospice. The NCM identified veterans at VA Boston Healthcare System during an acute admission and delivered a protocolized intervention to define care needs and preferences, align care with patient values, optimize discharge plans, and provide ongoing, intensive phone-based case management. To evaluate efficacy, we matched each Supportive CTraC enrollee 1:1 to a contemporary comparison subject by age, risk of death or hospitalization, and discharge diagnosis. We used Kaplan-Meier plots and Cox-Proportional Hazards models to evaluate outcomes. Outcomes included palliative and hospice care use, acute care use, Massachusetts Medical Orders for Life Sustaining Treatment documentation, and survival. The NCM enrolled 104 veterans with high protocol fidelity. Over 1.5 years of follow-up, Supportive CTraC enrollees were 61% more likely to enroll in hospice than the comparison group (n = 57 vs. 39; HR = 1.61; 95% CI = 1.07-2.43). While overall acute care use was similar between groups, Supportive CTraC patients had fewer ICU admissions (n = 36 vs. 53; p = 0.005), were more likely to die in hospice (53 vs. 34; p = 0.008), and twice as likely to die at home with hospice (32.0 vs. 15.5; p = 0.02). There was no difference in survival between groups. A nurse-driven transitional care program for veterans with serious illness is feasible and effective at improving end-of-life outcomes.

Reliability and Validity of the Chinese Version of Advance Care Planning Self-efficacy Scale for Physicians.

Background: Chinese patients prefer physicians to initiate advance care planning (ACP) conversations, but there is no appropriate tool to evaluate physicians' ACP self-efficacy level in mainland China. This study aimed to translate the ACP self-efficacy scale into Chinese (ACP-SEc) and measure its psychometric properties among clinical physicians. Method: The original scale was translated by literal translation, synthesis, and reverse translation, according to Brislin's translation model. Seven experts were invited to further revise the scale and evaluate the content validity. 348 physicians were conveniently sampled to evaluate the reliability and validity of the scale from May to June 2021 in 7 tertiary hospitals. Results: The ACP-SEc contained 17 items, 1 dimension, with a total score of 17 to 85 points. In this study, the critical ratios of the items ranged from 12.533 to 23.306, the item-total correlation coefficients ranged from 0.619 to 0.839. The item-content validity index ranged from 0.86 to 1.00, and the average scale-level content validity index was 0.98. In total, 75.507% of the total variance was explained by 1 common factor. The results of confirmatory factor analysis showed that the fitting indices of the modified model were desirable. The ACP-SEc was moderately correlated with General Self-Efficacy Scale (r = 0.675, P < .001), and it differentiated between physician groups based on the knowledge level of ACP, palliative care or ACP-related training experience, attitude toward ACP, willingness to initiate ACP discussions with patients, and experience of discussing ACP with family and friends, willingness to initiate ACP discussions with family and friends (P <.05). The total Cronbach's α and test-retest reliability of the scale were .960 and .976, respectively. Conclusion: The ACP-SEc shows good reliability and validity, and it can be used to assess the ACP self-efficacy level of physicians.

Russian nurses’ readiness for transcultural care of palliative patients

Palliative care involves an approach aimed at improving the quality of life of patients and their families, who are forced to cope with the problems associated with life-threatening diseases. This definition includes a growing group of patients around the world. It requires an extension of the definition of patients in need of palliative care in countries such as Russia and a significant improvement in the work of nursing personnel with these patients. This study aims to determine the level of preparedness of nursing personnel for specialized care (transcultural care) and the quality of care provided to palliative patients. The presented findings of the study demonstrate the relevance of developing transcultural competence, which enables significant improvement in the quality of life of palliative patients. The analysis of medical workers’ assessment of the level of specific training and their intercultural preparedness was conducted based on hospices (Moscow). A survey was conducted among 113 medical workers of the middle level of education aged between 28 and 56 (average of 44.2 years) and experience in palliative care ranged from 3 to 18 years (average of 9.5 years). The Intercultural Readiness Check (IRC) test, widely used to assess nursing staff worldwide, was used for the survey to determine the level of readiness for transcultural care. A strong correlation was found between a number of the test scales and measures of participants’ age and experience. The presented material demonstrates the realization of an interdisciplinary approach to the issues of specific training of nursing personnel in the field of “transcultural care” in providing palliative care to incurable patients.

A Gift Twice-Given is Truly Received.

Transplant Nephrologist turned Palliative Care – Hospice physician recounts personal experience in palliative care of patients with end-stage liver disease validating his conviction that Palliative Care is not just for dying patients.

Palliative care in a rural surgery residency program: an educational needs assessment.

There is a deficiency of palliative care education in surgical residency programs and a lack of research on palliative care education in rural surgery residency programs. Because rural palliative care presents unique challenges due to fewer specialists and resources, we investigated potential areas of improvement in palliative care education in a rural general surgery residency program. An anonymous survey was sent to all residents of a rural general surgery residency program. The survey assessed prior hospice/palliative care education in medical school, prior volunteering experience in palliative care, comfort with having "goals of care" discussions and delivering serious news, and perceived indications for palliative care consultation. A follow-up survey assessed attitudes and interest related to palliative care education integration in a rural surgical residency program. Of 17 residents, 14 (82.4%) responded to the initial survey. Four respondents (28.6%) had over a half day of palliative care education in medical school. Eight of fourteen respondents (57.1%) feel comfortable having "goals of care" discussions: 0/4 interns (0%) compared to 8/10 junior and senior residents (80%). Half of respondents feel comfortable delivering serious news: 1/4 interns (25%) compared to 6/10 junior and senior residents (60%). All respondents agreed that palliative care education is necessary. Four themes were identified in content analysis of perceived indications for palliative care consultation: future planning, deferring to the expert, patient/family education, and surgeon/trainee discomfort. The follow-up survey revealed perceived limitations in palliative care resources available in a rural surgery setting. These results highlight the need for formal palliative care education in a rural surgery residency program. Throughout training, residents appear to develop more comfort with "goals of care" discussions than delivering serious news. In response, we are instituting palliative care discussions during educational conference, including interactive simulations to improve communication skills, and a palliative care telemedicine elective.

Evaluation of service user-led workshops in children's palliative care education.

Children's nurses report feeling unprepared when caring for children with life-limiting conditions and their families, while the value of including service users in the provision of nursing education is increasingly recognised. This small-scale service evaluation examined the effect on learning of service user-led workshops as part of a module for final-year children's nursing students and post-registration children's nurses. The workshops focused on the experience of children's palliative care and child bereavement from the parents' perspective. Findings from evaluation data indicated high levels of satisfaction with the workshops and identified three themes: safe space, shift in perspective and enhancing practice. A model of service user facilitated learning describes how these themes can enable learning about children's palliative care. This evaluation suggests that the involvement of service users as partners in healthcare education can be transformative, enabling children's nursing students to examine their own perspectives and consider ways to enhance their future practice.

Middle East Cancer Consortium-Development of Palliative Care Services for Cancer Patients.

When patients are diagnosed with cancer, they lose the mode of living they have been accustomed to and face difficulties in coping with the new complexed medical condition. In the case of advanced stages of cancer, patients lose the ability to take an active role in decisions related to priority in treatment modality, decision-making, and planning. In addition, these patients lose the ability of choice-to agree to a certain mode of treatment, who will treat them, and where. Thus, these kinds of decisions are between family members and the treating team. This can happen only when both the formal caregivers and to lesser degree the informal partners are exposed to ongoing educational activities and training by both local experienced palliative care experts and international initiated courses (both frontal and remote). This article provides recommendations needed for an effective strategy at national levels to develop appropriate ways, whereby governmental agencies and non-governmental organizations can promote the establishment of palliative care services at all levels from primary to tertiary in each individual country. The basis for the above will rely on the experience that was gained through the application of palliative care principles.

Realizing homeliness in palliative care: inpatient and family perspectives on designing the built environment

This article reports 36 in-depth interviews with patients (n = 20) and family members of palliative care patients (n = 16), during an inpatient stay within one of four contemporary palliative care facilities. Interviews were conducted to understand how patients and families felt the built environment supported their experience of palliative care, and the ways that it did not. Over the past decade, a growing body of literature has sought to understand how architectural design can support wellbeing within palliative care settings. Yet, despite evidence that promotes the prioritization of privacy, homeliness, and nature, the sheer complexity of hospital procurement often results in compromises to the successful implementation of best design practice. Here we argue that a deeper understanding of what these environmental affordances mean to patients being treated for a terminal illness, and to their families, may encourage a necessary re-examination of the ease with which these provisions are compromised relative to considerations of risk, cost, or convenience (in building construction and/or maintenance). Importantly, our findings confirm that privacy, homeliness, and nature do not operate in isolation but in accord to shape experiences of palliative care.

Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study

Background: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. Aim: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. Design: Qualitative, retrospective study involving semi-structured interviews. Braun & Clarke’s reflexive thematic analyses using a constructionist-interpretive approach were conducted. Setting/participants: A total of 15 adult women participants who decided to continue their pregnancies after learning of life-limiting foetal diagnoses were recruited from a Singaporean tertiary hospital. Interviews were conducted in-person or via video conferencing. Results: Seven themes were synthesized from the data: (1) Internal upheaval – ‘World turns upside down’; (2) Role of religion and spirituality in hope of miracles; (3) Support from family and close friends; (4) Navigating a fragmented healthcare system; (5) Value added by the perinatal palliative service; (6) Goodbye and grieving and (7) No regrets and other personal reflections. Conclusions: Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.

“Provide Them What They Need Until the Last Minute”: Experiences of Palliative Care and Palliative Care Needs in Humanitarian Crises

Introduction:Access to palliative care, and more specifically the alleviation of avoidable physical and psychosocial suffering is increasingly recognized as necessary in humanitarian response. Palliative approaches to care can meet the needs of patients for whom curative treatment may not be the aim, not just at the very end of life but also more broadly. Humanitarian organizations and sectoral initiatives have taken steps to develop guidance and policies to support integration of palliative care. However, it is still sometimes regarded as unfeasible or aspirational in crisis contexts; particularly where care for persons with life threatening conditions or injuries is logistically, legally, and ethically challenging. We present a synthesis of findings from five qualitative sub-studies within a R2HC-funded research program on palliative care provision in humanitarian crises that sought to better understand the ethical and practical dimensions of humanitarian organizations integrating palliative care into emergency responses.Method:A multi-disciplinary, multi-national team conducted an exploratory mixed-methods study and presented findings from semi-structured interviews with international and local health care providers, patients, and families that explored experiences of palliative care in different humanitarian responses: protracted refugee crisis (Rwanda n=17), acute refugee crises (Jordan and Bangladesh n=20), a public health emergency (Guinea n=16), and natural disasters (various countries n =17)Results:Four themes emerged from descriptions of the struggles and successes of applying palliative care in humanitarian settings: 1) justification and integration of palliative care into humanitarian response, 2) contextualizing palliative care approaches to crisis settings, 3) the importance of being attentive to the ‘situatedness of dying’, and 4) the need for retaining a holistic approach to care. The findings are discussed relation to the ideals embraced in palliative care and corresponding humanitarian values.Conclusion:Though challenging, palliative care in humanitarian response is essential for responding to avoidable pain and suffering consistent with humanitarian principles.

Palliative Care Needs, Beliefs, and Experiences Among English- and Spanish-Speaking Hispanics/Latinos Living with Metastatic Cancer (Sch447)

Palliative Care Needs, Beliefs, and Experiences Among English- and Spanish-Speaking Hispanics/Latinos Living with Metastatic Cancer (Sch447)

‘The palliative care ambulance’: A qualitative study of patient and caregiver perspectives of an ambulance service

Background: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. Aim: To explore patient and family caregiver experiences of paramedics’ contribution to palliative care at home. Design: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. Setting/participants: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. Results: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. Conclusion: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.

Knowledge about Palliative Care and Attitudes toward Care of the Dying among Primary Care Nurses in Spain

To analyze the knowledge in palliative care and the attitudes toward caring for the dying of nurses who carry out their professional activity in primary care in Spain. A cross-sectional descriptive observational study was carried out among Spanish primary care centers. A total of 244 nurses who had completed their primary care work and agreed to participate in this study were included. The level of knowledge in palliative care was analyzed using the PCQN-SV scale, and attitudes toward care of the dying were measured with the FATCOD-S scale, both of which are instruments that are validated in Spain. Regarding the level of knowledge in palliative care, at a global level, the results revealed that 60% of the answers in the PCQN-SV were correct, with different results for each of the three subscales that compose it. When analyzing the attitudes of primary care nurses toward the care of the dying, an average of 132.21 out of 150 was obtained, representing a positive attitude. On the other hand, when analyzing these results in terms of knowledge and attitudes according to the population's characteristics, we see that participants with both experience and training in palliative care present a better level of knowledge and a higher score regarding their attitudes toward care of the dying. However, the differences are only significant regarding the level of knowledge in palliative care. When analyzing the data from the two scales together, it is noteworthy that the participants with the most positive attitudes (highest scores on the FATCOD-S) also have the highest percentages of correct answers on the PCQN-SV.

The Effect of Two Different Simulation Modalities in Palliative Care Teaching on Nursing Students' Knowledge, Satisfaction, Self-confidence, and Skills: A Randomized Controlled Trial.

Nursing students from developing countries have limited opportunities to experience palliative care. Standardized patient and low-fidelity simulations can provide realistic palliative care experiences for students. However, limited research is available on simulation-based education in Palestine. Testing and using these two types of simulation methods may be the best solution for developing countries that lack adequate resources. This study aimed to test the effects of low-fidelity simulation compared with standardized patient simulation in palliative care teaching on nursing students' knowledge, satisfaction, confidence, and skills. The study was a randomized controlled trial of 70 nursing students in their sophomore year. Students' knowledge was assessed with the Palliative Care Quiz for Nursing test; satisfaction and confidence with the Learner Satisfaction and Self-confidence in Learning; and skills rated by two researchers. Students' knowledge improved significantly on the posttest compared with the pretest, without significant differences between both groups. The findings showed that the utilization of the two methods in students' clinical training for scenario has the same effect on the satisfaction and confidence. The skills of the standardized patient group improved significantly more than the low-fidelity group. The study revealed that both simulation modalities are effective for palliative care nursing students.

Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs' psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs' lived experiences. We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews. AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences. Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.

What does ‘good’ palliative care look like for children and young people? A qualitative study of parents’ experiences and perspectives

Background: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children’s palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. Aim: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what ‘good’ palliative care is. Design: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. Setting/participants: Participants were parents of children and young people (aged 0–17 years) in England, who were receiving palliative care, and parents whose child had died. Results: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children’s hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. Conclusions: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.

Aid when 'there is nothing left to offer': Experiences of palliative care and palliative care needs in humanitarian crises.

Access to palliative care, and more specifically the alleviation of avoidable physical and psychosocial suffering is increasingly recognized as a necessary component of humanitarian response. Palliative approaches to care can meet the needs of patients for whom curative treatment may not be the aim, not just at the very end of life but alleviation of suffering more broadly. In the past several years many organizations and sectoral initiatives have taken steps to develop guidance and policies to support integration of palliative care. However, it is still regarded by many as unfeasible or aspirational in crisis contexts; particularly where care for persons with life threatening conditions or injuries is logistically, legally, and ethically challenging. This article presents a synthesis of findings from five qualitative sub-studies within a research program on palliative care provision in humanitarian crises that sought to better understand the ethical and practical dimensions of humanitarian organizations integrating palliative care into emergency responses. Our multi-disciplinary, multi-national team held 98 in-depth semi-structured interviews with people with experiences in natural disasters, refugee camps in Rwanda and Jordan, and in Ebola Treatment Centers in Guinea. Participants included patients, family members, health care workers, and other staff of humanitarian agencies. We identified four themes from descriptions of the struggles and successes of applying palliative care in humanitarian settings: justification and integration of palliative care into humanitarian response, contextualizing palliative care approaches to crisis settings, the importance of being attentive to the 'situatedness of dying', and the need for retaining a holistic approach to care. We discuss these findings in relation to the ideals embraced in palliative care and corresponding humanitarian values, concluding that palliative care in humanitarian response is essential for responding to avoidable pain and suffering in humanitarian settings.

Palliative care symptoms and problems in a culturally and linguistically diverse population: large retrospective cohort study

ObjectivesMigrant Australians with cancer have higher unmet needs and poorer health-related quality of life. Less is known about their palliative care experience. We aimed to assess comparative symptom distress and...

Neonatal palliative care: Assessing the nurses educational needs for terminally ill patients.

For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neonatal children is a lack of training for nurses. Aim: The aim of this research is to investigate the experiences of nurses who provide care for neonates who are terminally ill as well as their educational requirements for neonatal palliative care. A cross-sectional descriptive study was conducted among 200 nurses working in a tertiary center providing care for terminally ill neonates in Saudi Arabia. Data was collected from using Neonatal Palliative Care Questionnaire (QNPC) from January 2021 to March 2021. Two hundred nurses were surveyed (the response rate was 79%). The mean age of the 158 participants was 35.67 (standard deviation (SD): 7.43), and the majority were female (151; 95.6%). The majority were bachelor's holders (119; 75.3%), with more than 5 years of experience in providing care for neonates (100; 63.3%). Most of the participants reported not receiving any education about palliative care (115; 72.8%). Nurses reported a moderate level of experience in all areas of neonatal palliative care. The total mean score of palliative care experiences of neonates was 3.42 (SD: 1.35). However, the majority of nurses reported little experience discussing the transition period to palliative care for neonates 2.95 (SD: 1.93), the discussion of code status (DNR) during terminal illness of neonates 3.11 (SD: 1.54) and spiritual support 2.90 (SD: 1.55). The assessment of the fundamental skills of neonatal palliative care by nurses was insufficient. To enhance the quality of care, it is crucial to incorporate education on neonatal palliative care into programs for nursing staff development.

Dying at home for people experiencing financial hardship and deprivation: How health and social care professionals recognise and reflect on patients' circumstances.

International palliative care policy often views home as the most desirable location for end-of-life care. However, people living in more deprived areas can worry about dying in poor material circumstances and report more benefits from hospital admission at the end of life. There is increasing recognition of inequities in the experience of palliative care, particularly for people living in more deprived areas. Promoting an equity agenda in palliative care means building healthcare professionals' capacity to respond to the social determinants of health when working with patients near the end of their life. The purpose of this article is to present data which reveal how some health and social care professionals view home dying for people experiencing financial hardship and deprivation. This work was framed by social constructionist epistemology. Semi-structured qualitative interviews (n = 12) were conducted with health and social care professionals who support people at the end of life. Participants were recruited from one rural and one urban health board area in Scotland, UK. Data collection occurred between February and October 2021. Thematic analysis was used to analyse the interview data. Our findings suggest that healthcare staff relied on physical clues in the home environment to identify if people were experiencing financial hardship, found discussions around poverty challenging and lacked awareness of how inequities intersect at the end of life. Health professionals undertook 'placing' work to try and make the home environment a suitable space for dying, but some barriers were seen as insurmountable. There was recognition that increased partnership working and education could improve patient experiences. We argue further research is needed to capture the perspectives of individuals with direct lived experience of end-of-life care and financial hardship.