Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities.

Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses.

Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses.

A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.

Palliative sedation is a common treatment in palliative care. The home is a difficult environment for research, and there are few studies about sedation at home. Our aim was to analyze this practice in a home setting.

We conducted a retrospective cross-sectional descriptive study in a home cohort during 2011. The inclusion criteria were as follows: 18 years or older and enrolled in the Palliative Home Care Program (PHCP) with advanced cancer. The variables employed were: sex, age, primary tumor location, and place of death. We also registered indication, type, drug and dose, awareness of diagnosis and prognosis, consent, survival, presence or absence of rales, painful mouth, and ulcers in patients sedated at home. We also collected the opinions of family members and professionals about the suffering of sedated patients.

A total of 446 patients (56% at home) of the 617 admitted to the PHCP between January and December of 2011 passed away. The typical patient in our population was a 70-year-old man with a lung tumor. Some 35 (14%) home patients required sedation, compared to 93 (49%) at the hospital. The most frequent indication was delirium (70%), with midazolam the most common drug (mean dose, 40 mg). Survival was around three days. Rales were frequent (57%) as well as awareness of diagnosis and prognosis (77 and 71%, respectively). Perception of suffering after sedation was rare among relatives (17%) and professionals (8%). In most cases, the decision was made jointly by professionals and family members.

Our study confirmed the role of palliative sedation as an appropriate therapeutic tool in the home environment.

Given the increasing number of patients requiring palliative care and the need for more professionals who are able to provide care for the dying comfortably, assessment of medical attitudes toward end-of-life care is becoming a key aspect of medical education. The present study aimed to establish whether the Frommelt Attitude Toward the Care Of the Dying, Form B (FATCOD–B) meets current psychometric standards of validity for an assessment tool in medical education.

The participants were 200 undergraduate medical students. Since in a previous study the FATCOD–B was found to have a weak structure due to poor item validity, a refined version was proposed and tested in the present study. Confirmatory factor analysis and the Rasch model were employed to assess its dimensionality and psychometric properties.

The construct measured by the FATCOD–B continues to be misspecified. The tool has a two-dimensional structure. The first is well-structured and demonstrates appreciable measurement and discriminant capabilities. The second has low validity because its measurement capabilities are based on weakly correlated items.

Our results suggest that the FATCOD–B measures a two-dimensional construct and that only its first dimension is a robust measurement tool for use in medical education to evaluate undergraduates' attitudes about caring for the dying.

There is scarce research on the short-term fluctuations in end-of-life (EoL) care planning for seriously ill patients. The aim of our study was to investigate the stability of preferences regarding treatment in an intensive care unit (ICU) and identify the factors associated with changes in preferences in terms of quality of life (QoL).

A prospective examination on preference changes for ICU care in 141 terminal cancer patients was conducted. Patients were categorized according to their change in preference during the final two months of their lives into four categories: (1) the keep–accept group, (2) the keep–reject group, (3) the change to accept group, and (4) the change to reject group. Using multiple logistic analyses, we explored the association between patient demographics, health-related QoL, and changes in ICU preference.

The overall stability of ICU preferences near the end of life was 66.7% (κ = 0.33, p < 0.001). Married patients were more likely to change their preference regarding ICU care [adjusted odds ratio (aOR) toward accept 12.35, p = 0.021; aOR toward reject 10.56, p = 0.020] than unmarried patients. Patients with stable physical function tended to accept ICU care (aOR = 5.05, p = 0.023), whereas those with poor performance (aOR = 5.32, p = 0.018), worsened QoL (aOR = 8.34, p = 0.007), or non-aggravated fatigue (aOR = 8.36, p = 0.006) were more likely to not accept ICU care.

The attitudes of terminally ill cancer patients regarding ICU care at the end of life were not stable over time, and changes in their QoL were associated with a tendency to change their preferences about ICU care. Attention should thus be paid to patients' QoL changes to improve medical decision making with regard to EoL care.

This systematic literature review aimed to critically appraise empirical evidence investigating palliative care (PC) nurses’ experiences of stress, anxiety, and burnout.

Six databases (PsycINFO, MEDLINE, Scopus, CINAHL, PubMed, and Web of Science) covering literature within psychology, medicine and healthcare, and social sciences were searched from inception until December 2020. Studies were eligible if they included qualitative literature reporting on experiences of nurses working in a PC setting of stress, anxiety, or burnout, and were published in English. Eighteen studies satisfied the review's inclusion criteria and were considered relevant to the review aims. Critical appraisal was undertaken using the Critical Appraisal Skills Programme Qualitative Checklist.

Thematic synthesis identified three main themes: When work becomes personal, The burden on mind and body, and Finding meaning and connection. The findings suggested that stress, anxiety, and burnout are deeply personal feelings experienced by nurses both on an emotional and physical level. Additionally, PC nurses’ experiences can differ in meaning and strength depending on their relationships with patients, patients’ families, and colleagues.

The synthesis highlighted that PC nurses' experiences are complex, encompassing clinical and organizational challenges, and the personal impact their work has on them. Having a greater understanding of the factors that contribute to PC nurses’ experiences may help in PC nurses’ core training and continuing professional education, as well as the provision of effective supervision and staff support.

There is substantial evidence that tricyclic antidepressants are effective in the management of chronic pain, including cancer pain. In oncological settings, these agents are used as adjuvant analgesic drugs. However, cases of akathisia due to tricyclic antidepressants used as adjuvant analgesic therapy have not previously been reported.

Two cancer patients experiencing chronic pain who were refractory to nonsteroidal anti-inflammatory drugs and opioids were prescribed amoxapine as an adjuvant analgesic therapy for neuropathic pain. These patients developed inner restlessness and restless physical movements after amoxapine was prescribed. Although symptoms were atypical, akathisia was suspected and discontinuation of amoxapine resolved the symptoms.

Akathisia should be considered in patients receiving adjuvant analgesic therapy with tricyclic antidepressants. Early detection and appropriate treatment will relieve this distressing symptom. Restless movements involving parts of the body other than the legs may be the clue to the diagnosis.

The primary end points of this analysis were to explore 1) the practices of prognostic disclosure for patients with cancer and their family members in Japan, 2) the person who decided on the degree of prognosis communication, and 3) family evaluations of the type of prognostic disclosure.

Semistructured face-to-face interviews were conducted with 60 bereaved family members of patients with cancer who were admitted to palliative care units in Japan.

Twenty-five percent of patients and 75% of family members were informed of the predicted survival time of the patient. Thirty-eight percent of family members answered that they themselves decided on to what degree to communicate the prognosis to patients and 83% of them chose not to disclose to patients their prognosis or incurability. In the overall evaluation of prognosis communication, 30% of the participants said that they regretted or felt doubtful about the degree of prognostic disclosure to patients, whereas 37% said that they were satisfied with the degree of prognostic disclosure and 5% said that they had made a compromise. Both in the “prognostic disclosure” group and the “no disclosure” group, there were family members who said that they regretted or felt doubtful (27% and 31%, respectively) and family members who said that they were satisfied with the degree of disclosure (27% and 44%, respectively).

In conclusion, family members assume the predominant role as the decision-making source regarding prognosis disclosure to patients, and they often even prevent prognostic disclosure to patients. From the perspective of family members, any one type of disclosure is not necessarily the most acceptable choice. Future surveys should explore the reasons why family members agree or disagree with prognostic disclosures to patients and factors correlated with family evaluations.

The purpose of this study was to assess the psychological care needs of cancer patients throughout the healthcare process: after diagnosis, after medical treatment (surgery, chemotherapy, radiotherapy) and during follow-up.

A total of 703 ambulatory cancer patients were assessed in this study. The inclusion period was from April 1, 2005 to April 30, 2007. The first psychological scales used were the 14-item Hospital Anxiety and Depression Scales (HADS), which has two sub-scales for anxiety (7 items) and for depression (7 items). All patients with a score ≥14 were assessed through the Structured Clinical Interview for Psychiatric Disorder (SCID-I) of the DSM-IV. All data were compared with sociodemographic and medical characteristics.

Of the 703 cancer patients in the study, 349 were men and 354 women, with a mean age of 53 years. The median time between the cancer diagnosis and our clinical interview was 6 months (range, 12 days to 190 months). Overall, the screening tools indicated that one in four patients needed psychological care. The most common psychiatric diagnosis was adjustment disorder (129 cases), whereas 10 patients were diagnosed with major depression. Using a HADS cut-off score of >7 for anxiety and depression, 28% and 17% of patients, respectively, were classified as “possible clinical cases.” Risk factors for distress included age <65 years, asthenia, constipation, and a low performance status. However, chemotherapy treatment was found to be a protector against distress in cancer patients.

Chemotherapy treatment is interpreted by the patients as a protector against cancer, thereby reducing distress levels.

Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a “toolkit” to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers.

Guided by the RE-AIM (Reach, Effectiveness–Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits.

We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey.

We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive “toolkit” to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

The number of diagnosed cases of stomach cancer in Western countries is relatively small compared to prevalence rates in Eastern populations. This disparity creates a general lack of information and understanding of the experience of patients treated for this disease in North America. Surgical removal of the stomach, also called total gastrectomy (TG), is presently the only curative treatment available to patients with stomach cancer. Considering the impact such a procedure may have, very little is known about what factors influence an individual's postsurgical quality of life (QL).

This article reviews current literature and examines three unique case studies. Semi-structured interviews were analyzed using content analysis, a qualitative analytic approach for reporting combined subject responses.

Participants included one 37-year-old man with multiple polyps in his stomach and a family history of stomach cancer, one 18 year-old man with a confirmed CDH1 mutation and a family history of stomach cancer, and one 33-year-old man with confirmed metastatic gastric adenocarcinoma. Subjective patient experience was categorized into: (1) making the decision, (2) treatment impact, and (3) life after TG. Prior to surgery, all patients carefully evaluated their perceived risk compared to the treatment consequences and indicated that a certain event triggered their decision. The largest treatment impacts were learning to eat again and adjusting to the physical changes. Each patient endorsed that their experience made them appreciate and make the most of life.

This currently represents the only study to investigate the lived experience of TG for prophylaxis or palliation in individuals with and without genetic risk for stomach cancer. Understanding this process will allow all members of the cancer care team, and the patients themselves, to better understand the factors involved in decision making and postoperative adjustment. Fruitful avenues for future research are discussed.

Guidelines for palliative and spiritual care emphasize the importance of screening patients for spiritual suffering. The aim of this review was to synthesize the research evidence of the accuracy of measures used to screen adults for spiritual suffering.

A systematic review of the literature. We searched five scientific databases to identify relevant articles. Two independent reviewers screened, extracted data, and assessed study methodological quality.

We identified five articles that yielded information on 24 spiritual screening measures. Among all identified measures, the two-item Meaning/Joy & Self-Described Struggle has the highest sensitivity (82–87%), and the revised Rush protocol had the highest specificity (81–90%). The methodological quality of all included studies was low.

While most of the identified spiritual screening measures are brief (comprised 1 to 12 items), few had sufficient accuracy to effectively screen patients for spiritual suffering. We advise clinicians to use their critical appraisal skills and clinical judgment when selecting and using any of the identified measures to screen for spiritual suffering.

With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.

An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.

Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of “Performance, symptoms and emotional concerns” and “End-of-life and existential aspects”. Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as “Dignity-related distress” and “Quality of life” were common. However, the results lacked concrete communication outcomes.

The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

Experiencing a life-threatening illness such as cancer can elicit both negative (e.g., distress) and positive (e.g., growth) psychological responses. The present study sought to determine the correlates of four positive psychological byproducts in cancer survivors: becoming a stronger person, coping better with life's challenges, making positive changes in life, and adopting healthier habits.

Data for this cross-sectional study were taken from the Medical Expenditures Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement (Yabroff et al., 2012). Cancer survivors (N = 785) reported their sociodemographic and cancer-related characteristics. Descriptive statistics were utilized to summarize cancer survivor characteristics, including demographic factors, cancer factors, and stressors and resources related to cancer. Multivariable logistic regressions were employed to assess the independent association of the stressors and resources with each psychological response, controlling for covariates. All analyses were weighted to account for the complex sampling design of the MEPS.

In multivariable analyses, those with a family caregiver were 50% more likely to report better coping with challenges, and around 70% were more likely to report making positive changes in life or adopting healthier habits because of their cancer. Receiving informational support from healthcare providers was also consistently associated with positive byproducts (odds ratios ranging from 1.6 to 2.0). Few of the stressors were associated with positive byproducts: having insurance problems due to cancer was positively associated with becoming a stronger person, and work limitations were associated with making positive changes in life; those who reported high perceived chances of recurrence were less likely to report becoming a stronger person.

Having a family caregiver and receiving detailed informational support from healthcare providers were associated with reporting positive experiences with cancer. The hypotheses and future research stimulated by these findings may improve our understanding of the process by which positive byproducts develop and may ultimately help improve psychological well-being among cancer survivors.

The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma.

A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals.

The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming “palliative” is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care.

Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.

Prostate cancer, one of the most common cancers in men, is often treated with radiotherapy, which strains both physical and mental health. This study aimed to describe the experiences of men living with prostate cancer shared within conversational support groups during a course of radiotherapy.

Nine men participated in one of two groups that met six or seven times, led by a professional nurse. Qualitative content analysis was used to identify themes and subthemes in the recorded group conversations.

The analysis resulted in six themes: living with a changing body, being in the hands of others, learning to live with the disease, the importance of knowledge, everyday life support, and meeting in the support group. The men discussed a wide variety of bodily experiences and described support from healthcare professionals, relatives, friends, and the support group as crucial to their recovery.

Meeting men in a similar situation, sharing experiences of living with the disease, and feeling allied to each other were important to the men in our study. The conversational support group provided the patient with prostate cancer a forum where sharing was made possible.

Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden.

This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time.

Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time.

Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori.

Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts.

We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner.

These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

The purpose of this systematic review is to describe the elements of the psychological experience of pediatric oncology patients facing life-threatening situations and the corresponding care needs.

The study design is a systematic review following the PRISMA standard of qualitative, quantitative, and mixed-methods research. The review was conducted using multiple databases, including Scopus, Web of Science, PubMed, and PsycINFO. The risk of bias of the articles was evaluated with the “Critical Appraisal Skills Programme.”

A total of 21 articles met inclusion criteria. The analysis of the evidence revealed that the psychological experience involves changes in relationships, thoughts about death, emotional changes, physical symptoms, spiritual changes, and feelings of uncertainty.

The care needs identified are maintaining normality, controlling physical and psychological symptoms, and that maintaining hope is an important aspect for children. Whether or not the children want to talk about death is another important aspect that needs to be reflected upon, and it would be appropriate to consider, on an individual level, involving patients in the discussion on the diagnosis and treatment of the illness. Future research should be conducted from the children's perspective since most existing research is from the perspective of the family members or health professionals. Furthermore, it is recommended to take into account qualitative approaches that provide more detailed information on the patients’ subjectivity.

Volunteers trained in palliative care are increasingly present in acute care units in general hospitals. Nevertheless, there still are few available data on this topic, especially concerning the integration of volunteers outside the palliative structures. Our present study aimed to describe the experience of volunteers trained in palliative care in the context of a primary care hospital. In particular, the difficulties and the benefits of this specific position were evaluated according to volunteers' own perceptions and words.

We employed a qualitative method. Various aspects of the volunteer's role were explored by means of semistructured questions, addressing their activity, their motivations, and their feelings. Participants were volunteers (n = 19) trained in palliative care and working at a university hospital. After giving written consent, they completed the semistructured questionnaire at home. Content analysis was used to identify the main categories of answers and the principal themes reported by the volunteers.

The main difficulties were related to uncertainty of the context. As every situation is different, volunteers could not define their role once and for all. However, they derived great satisfaction from their activity. A supporting frame and a good balance between constraints and autonomy were facilitating factors. Besides, the complexity related to the context contributed to make the position valuable and challenging.

Integrating a voluntary service in a primary care hospital is partly based on active participation of the volunteers in developing their position in a more adequate way. In return, this relative autonomy implies a rigorous and supportive attitude from the institution.