Despite the increasing prominence of residential hospices as a place of death and that, in many regards, this specialized care represents a gold standard, little is known about the care experience in this setting. Using qualitative survey data, we examined the positive and negative perceptions of care in hospices and in other prior settings.

Qualitative comments were extracted from the CaregiverVoice survey completed by bereaved caregivers of decedents who had died in 16 residential hospices in Ontario, Canada. On this survey, caregivers reported what was good and bad about the services provided during the last three months of life as separate open-text questions. A constant-comparison method was employed to derive themes from the responses.

A total of 550 caregivers completed the survey, 94% (517) of whom commented on either something good (84%) and/or bad (49%) about the care experience. In addition to residential hospice, the majority of patients represented also received palliative care in the home (69%) or hospital (59%). Overall, most positive statements were about care in hospice (71%), whereas the negative statements tended to refer to other settings (81%). The hospice experience was found to exemplify care that was compassionate and holistic, in a comforting environment, offered by providers who were personable, dedicated, and informative. These humanistic qualities of care and the extent of support were generally seen to be lacking from the other settings.

Our examination of the good and bad aspects of palliative care received is unique in qualitatively exploring palliative care experiences across multiple settings, and specifically that in hospices. Investigation of these perspectives affirmed the elements of care that dying patients and their family caregivers most value and that the hospices were largely effective at addressing. These findings highlight the need for reinforcing these qualities in other end-of-life settings to create comforting and supportive environments.

To assess hopelessness, anxiety, depression, and quality of life in cancer patients undergoing palliative treatment by comparing their scores at the onset of treatment and one month later and by assessing possible correlations with coping strategies.

Participants included 85 patients of both genders (56.5% female) diagnosed with advanced cancer who did not have curative therapeutic options who were assessed with self-applied instruments (the Beck Hopelessness Scale, the European Organization for the Research and Treatment of Cancer Quality of Life Core Questionnaire–Cancer 30, the Hospital Anxiety and Depression Scale, and the Coping Strategies Inventory by Folkman and Lazarus) at two timepoints: first before their appointment with doctors and other professionals in their first visit to the palliative care outpatient clinic (PCOC) and then as soon as patients arrived at the PCOC for their first medical follow-up visit (approximately 30 days after the first appointment).

The scores for hopelessness, anxiety, and depression remained stable (p = 0.24). The results were the same for the quality-of-life (QoL) variables, except for the fatigue and pain scores, which decreased (p = 0.01), and social impairment, which increased (p = 0.03). Analysis of the correlations between the coping mechanisms used after the onset of palliative treatment showed that confronting coping, seeking social support, and positive reappraisal were inversely correlated with hopelessness. Seeking social support, planful problem solving, and positive reappraisal were inversely correlated with indicators of depression. In contrast, use of the escape–avoidance strategy and reduced use of the planful problem-solving strategy were associated with increased anxiety.

The employment of problem-focused coping strategies exerted a positive impact on the end-of-life process and, above all, protected patients from the negative experiences associated with psychiatric symptoms, thus enabling them to look for alternative solutions for experiencing the end-of-life process in a more well-adjusted manner.

The purpose of this study was to explore the hope experience of registered nurses (RNs) who provide palliative care services in community settings. The specific aims of the study were to (1) describe their hope experience, (2) develop a reflexive understanding of the processes of their hope, and (3) construct a substantive theory of hope of palliative care RNs.

Using constructivist grounded theory methodology, purposeful theoretical sampling was used to enroll 14 practicing community palliative care RNs in the study. Twenty-seven open-ended telephone interviews were conducted and nine daily journal entries on hope were copied. Interviews and journals were transcribed verbatim and analyzed using Charmaz's grounded theory approach.

Participants described their hope as a positive state of being involving a perseverant and realistic understanding of future possibilities. Their hope sustained and motivated them, and helped them to strive to provide high-quality care. The main concern for participants was keeping their hope when faced with work life challenges and contrasting viewpoints (i.e., when their hopes differed from the hopes of others around them). They dealt with this through harmonizing their hope by the processes of “looking both ways,” “connecting with others,” “seeing the bigger picture,” and “trying to make a difference.” Their experience of hope was defined within the social context of their work and lives.

The results of this study suggest that hope is very important to palliative care RNs, in that it helps them to persevere and sustains them when faced with work life challenges in their practice. This study also highlights the need for continued research in this area as there appears to be a lack of evidence on the meaning of hope for healthcare professionals, and, in particular, understanding hope in the context of palliative and end-of-life care delivery.

Psychosocial interventions directed to couples where one has advanced cancer can reduce distress, enhance communication, and provide an opportunity for relational growth. The present study aimed to develop an intervention to facilitate communication about living with advanced cancer using the Patient Dignity Inventory (PDI) as the focus of a clinical interview with couples toward the end of life.

Couples were recruited from oncology and palliative care services at a Sydney hospital. After the PDI was developed and manualized as an intervention for couples, the PDI–Couple Interview (PDI–CI) was delivered by a clinical psychologist and comprised the following: (1) the patient completed the PDI; (2) the patient's identified partner completed the PDI about how they thought the patient was feeling; and (3) the clinician reviewed the results with the couple, summarizing areas of concurrence and discordance and facilitating discussion.

Some 34 couples were referred, of which 12 consented, 9 of whom completed the clinical interview. Reported benefits included enabling couples to express their concerns together, identifying differences in understanding, and giving “permission to speak” with each other. The focus of the interview around the PDI provided a structure that was particularly acceptable for men. Most couples confirmed that they were “on the same page,” and where differences were identified, it provided a forum for discussion and a mutual understanding of the challenges in managing advanced cancer within a supportive context.

Participant couples' experiences of the PDI–CI provide valuable insight into the benefits of this intervention. This preliminary study indicates that the intervention is a relatively simple means of enhancing closer communication and connection between couples where one has advanced cancer and may be an important adjunct in helping prepare couples for the challenges inherent toward the end of life. Further investigation of feasibility with a larger sample is recommended.

Little is known about relationships between patient spiritual well-being and caregiver outcomes for those with advanced cancer. We were interested in examining the relationship between patient physical quality of life (QOL) and caregiver depression and to also evaluate whether patient spiritual well-being (SWB) played a mediating role in this relationship.

This is a prospective longitudinal study that was conducted in the outpatient clinics at a university-affiliated comprehensive cancer center. 226 patients with Stage III or IV cancer (lung, GI, GYN) and their primary caregivers were interviewed upon enrollment into the study and three months later. Measures of spirituality, health-related quality of life, and physical functioning were included in the interviews.

Key findings were that the relationship between patient physical QOL and caregiver depression was inverse and moderate (β = −0.24, p = 0.004) and that patient SWB (meaning/peace) played a significant (p = 0.02) and medium-size role (β = −0.31) in mediating the relationship between patient physical QOL and caregiver depression. The nature of these relationships was stable over time.

Patients' spirituality is central to their coping and adjusting to cancer. It is this aspect of patient overall quality of life that mediates the relationship to caregiver well-being. The most potent intervention for caregiver depression may be attending to patient spiritual distress.

To review current evidence of nurses’ involvement in end-of-life discussions with incurable cancer patients and their family caregivers.

We conducted a systematic integrative review in accordance with PRISMA guidelines: PROSPERO, registration number: CRD42020186204.

CINAHL, Medline, PsycInfo, Embase. We searched for primary research between 2010 and 2020.

Of 3,271 references, we found 15 eligible articles: qualitative (n = 12) and quantitative (n = 3). The studies focused on oncology nurses' perspective of involvement in end-of-life discussions. The data analysis resulted in four overall themes: (1) Nursing roles; the advocating, supporting, and reframing roles, and an undefined task, for example in medical consultations, (2) Trust building, (3) Nurse competences, and (4) Medical issues.

The nurses have several roles in end-of-life discussions, but insufficient competencies to be involved in that kind of discussions, for example to involve and communicate with families. The findings implicate an educational need among the nurses. However, it also points toward an organizational change in the outpatient clinics, for example that end-of-life discussions follow a more structured approach, are offered in a scheduled manner, and that nurses invite the family caregivers to attend.

This study examined the prevalence of clinically significant anxiety among informal hospice caregivers and identified the characteristics of caregivers who experienced anxiety of this severity.

An exploratory secondary data analysis pooled from three separate studies of informal hospice caregivers (N = 433) was conducted. Researchers employed descriptive statistics to calculate anxiety prevalence and utilized logistic regression to model the associations between the covariates (i.e., caregiver characteristics) and anxiety.

Overall, 31% of informal hospice caregivers reported moderate or higher levels of anxiety. Caregivers associated with the research site in the Northwest were less likely to be anxious than those in the Southeast [χ2(3, N = 433) = 7.07, p = 0.029], and employed caregivers were less likely to be anxious than unemployed caregivers (OR = 0.56, 95% CI = 0.33, 0.96). The likelihood of being anxious decreased with increasing physical quality of life (OR = 0.77, 95% CI = 0.69, 0.85), and younger female caregivers were more likely to be anxious than male caregivers and older females (OR = 0.95, CI = 0.91, 0.99).

A noteworthy number of informal hospice caregivers experience clinically significant levels of anxiety. Increased efforts to screen and address anxiety in this population are recommended.

Delirium affects all higher cortical functions supporting complex information processing consistent with widespread neural network impairment. We evaluated the relative prominence of delirium symptoms throughout episodes to assess whether impaired consciousness is selectively affecting certain brain functions at different timepoints.

Twice-weekly assessments of 100 consecutive patients with DSM-IV delirium in a palliative care unit used the Delirium Rating Scale Revised-98 (DRS-R98) and Cognitive Test for Delirium (CTD). A mixed-effects model was employed to estimate changes in severity of individual symptoms over time.

Mean age = 7 0.2 ± 10.5 years, 51% were male, and 27 had a comorbid dementia. A total of 323 assessments (range 2–9 per case) were conducted, but up to 6 are reported herein. Frequency and severity of individual DRS-R98 symptoms was very consistent over time even though the majority of patients (80%) experienced fluctuation in symptom severity over the course of hours or minutes. Over time, DRS-R98 items for attention (88–100%), sleep–wake cycle disturbance (90–100%), and any motor disturbance (87–100%), and CTD attention and vigilance were most frequently and consistently impaired. Mixed-effects regression modeling identified only very small magnitudes of change in individual symptoms over time, including the three core domains.

Attention is disproportionately impaired during the entire episode of delirium, consistent with thalamic dysfunction underlying both an impaired state of consciousness and well-known EEG slowing. All individual symptoms and three core domains remain relatively stable despite small fluctuations in symptom severity for a given day, which supports a consistent state of impaired higher cortical functions throughout an episode of delirium.

A qualitative pilot study was conducted to identify and describe expert behaviors in care of the dying resident in a personal care home setting from the perspective of health care aides (N = 5) nominated by their peers as demonstrating excellence in end-of-life care.

Data was collected through audio-taped semi-structured interview, and transcribed verbatim using constant-comparative analysis procedures.

The over-arching theme emerging from the data was “caring as if it were my family.” Subsumed within this main theme included the sub-themes of: (1) care of the resident; (2) tending to the environment; (3) care of the family; (4) going to bat; and (5) processing loss.

The findings from this pilot study provide preliminary empirical evidence that could inform educational programs for and performance evaluation of, health care aides providing end-of-life care in personal care home environments.

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients.

We investigated a wide range of factors related to the patient–family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI–7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI–10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden.

We analyzed 227 patient–family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden.

Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity.

Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support.

After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale.

The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

Discussing the transition from active anti-cancer treatment to palliative care can be difficult for cancer patients and oncology health professionals (OHP). We developed a brief communication skills workshop to assist OHP with these conversations, and examined satisfaction with the workshop and perceived confidence regarding these discussions.

Interactive workshops were conducted by trained facilitators and included cognitive, behavioral, and experiential components. The major component of the workshop involved role-plays with trained actors (simulated patients). Participants completed an evaluation questionnaire.

Sixty-two OHP participated in workshops. Overall, participants were highly satisfied with the workshop content and format. All participants felt the workshop provided relevant practical information, and >80% thought that participation benefited their work. Over 98% said that the workshop had increased confidence in their communication skills.

Participants were very satisfied with the workshop, and thought that participation increased confidence in communicating about the transition to palliative care. Dissemination of this model of communication skills training seems warranted.

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.

The purpose of this paper is to summarize the use of the knowledge to action framework for adapting guidelines for practice and the evidence for effective implementation interventions to promote a quality response to cancer distress screening data.

We summarize progress in screening implementation in Ontario, Canada and the application of a systematic approach for adapting knowledge to practice and use of evidence-based knowledge translation interventions to ensure the uptake of best practices to manage distress.

While significant progress has been made in the uptake of distress screening it is less clear if this has resulted in improvements in patient outcomes, i.e., reduced distress. The use of evidence-based knowledge translation strategies tailored to barriers at many levels of care delivery is critical to facilitate the uptake of distress screening data by the primary oncology team.

There is a wealth of knowledge about the approaches that can be applied to translate knowledge into practice to improve psychosocial care and promote evidence-based distress management by the primary care oncology team. However, further implementation research is needed to advance knowledge about the most effective strategies in the context of cancer care.

Research is required in order to illustrate and detail the experiences of informal caregivers of patients with motor neurone disease (pwMND) to further advance the research base and to inform the development of future support structures and services. Due to the heterogeneous nature of caregiving for pwMND, one way in which this can be achieved is through a qualitative review. A qualitative thematic analysis of existing qualitative studies has not, to the best of the authors' knowledge, been previously undertaken. Thus, the present synthesis aims to identify caregivers' experiences and to suggest factors that contribute to these experiences in order to fulfill the required research needs.

A thematic synthesis of qualitative literature was conducted. AMED, Medline, SPORTDiscus, CINAHL, and PubMed were electronically searched from inception until September of 2015. Studies were eligible if they included qualitative literature reporting on firsthand experience of informal caregivers of patients with MND, were published in English, and contained verbatim quotations. Critical appraisal was undertaken using a 13-item consolidated criteria for reporting qualitative studies (COREQ) checklist.

A total of 10 studies met the inclusion criteria, with 148 (50 male) current or previous informal caregivers of pwMND identified. Critical appraisal demonstrated that study design and reflexivity were underreported. The synthesis derived three themes: (1) loss of control, (2) inability to choose, and (3) isolation.

The synthesis highlighted the factors that contribute to both positive and negative caregiving experiences. Through these experiences, such suggestions for service provision as improving communication with healthcare professionals and having a single point of contact emerged. However, the outcome of such suggestions on the experience of caregivers is beyond the scope of our synthesis, so that further research is required.

Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams.

Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments.

Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy.

A “good death” involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning, quality of life can be improved in those deserving of a significant and emotionally rich daily existence during their final days.

The experience of living with dying has attracted limited research. We utilized interpretive phenomenological analysis to explore the lived experience of individuals with terminal cancer receiving palliative care in Ireland.

Participants were purposely selected from public interviews that had been conducted between 2006 and 2011. The study included the accounts of eight participants (N = 8; six females and two males) with a diagnosis of terminal cancer. Participant ages ranged from 36 to 68 years.

Three master themes emerged from the analysis: the personal impact of diagnosis, the struggle in adjusting to change, and dying in context. The results revealed that participants were still living while simultaneously dying. Interestingly, participants did not ascribe new meaning to their lives. The terminal illness was understood within the framework of the life that had existed before diagnosis. They strove to maintain their normal routines and continued to undertake meaningful activities. Management of unfinished business and creation of a legacy were salient tasks. Social withdrawal was not present; rather, participants engaged in emotional labor to sustain valued roles. However, we found that within the public domain there is a paucity of education and discourse supporting individuals at the end of life. The hospice was noted as an important external resource. Each participant experienced a unique dying process that reflected their context.

Healthcare professionals need to recognize the subjectivity of the dying process. Dying individuals require support and options to maintain their personhood.