BACKGROUND: A critical barrier to improving the quality of end-of-life (EOL) cancer care is our lack of understanding of the mechanisms underlying variation in EOL treatment intensity. This study aims to fill this gap by identifying 1) organizational and provider practice norms at major US cancer centers, and 2) how these norms influence provider decision making heuristics and patient expectations for EOL care, particularly for minority patients with advanced cancer.
METHODS: This is a multi-center, qualitative case study at six National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) Comprehensive Cancer Centers. We will theoretically sample centers based upon National Quality Forum (NQF) endorsed EOL quality metrics and demographics to ensure heterogeneity in EOL intensity and region. A multidisciplinary team of clinician and non-clinician researchers will conduct direct observations, semi-structured interviews, and artifact collection. Participants will include: 1) cancer center and clinical service line administrators; 2) providers from medical, surgical, and radiation oncology; palliative or supportive care; intensive care; hospital medicine; and emergency medicine who see patients with cancer and have high clinical practice volume or high local influence (provider interviews and observations); and 3) adult patients with metastatic solid tumors and whom the provider would not be surprised if they died in the next 12 months and their caregivers (patient and caregiver interviews). Leadership interviews will probe about EOL institutional norms and organization. We will observe inpatient and outpatient care for two weeks. Provider interviews will use vignettes to probe explicit and implicit motivations for treatment choices. Semi-structured interviews with patients near EOL, or their family members and caregivers will explore past, current, and future decisions related to their cancer care. We will import transcribed field notes and interviews into Dedoose software for qualitative data management and analysis, and we will develop and apply a deductive and inductive codebook to the data.
DISCUSSION: This study aims to improve our understanding of organizational and provider practice norms pertinent to EOL care in U.S. cancer centers. This research will ultimately be used to inform a provider-oriented intervention to improve EOL care for racial and ethnic minority patients with advanced cancer.
Background: Advanced heart failure (AHF) carries a morbidity and mortality that are similar or worse than many advanced cancers. Despite this, there are no accepted quality metrics for end-of-life (EOL) care for patients with AHF.
Methods and Results: As a first step toward identifying quality measures, we performed a qualitative study with 23 physicians who care for patients with AHF. Individual, in-depth, semistructured interviews explored physicians' perceptions of characteristics of high-quality EOL care and the barriers encountered. Interviews were analyzed using software-assisted line-by-line coding in order to identify emergent themes. Although some elements and barriers of high-quality EOL care for AHF were similar to those described for other diseases, we identified several unique features. We found a competing desire to avoid overly aggressive care at EOL alongside a need to ensure that life-prolonging interventions were exhausted. We also identified several barriers related to identifying EOL including greater prognostic uncertainty, inadequate recognition of AHF as a terminal disease and dependence of symptom control on disease-modifying therapies.
Conclusions: Our findings support quality metrics that prioritize receipt of goal-concordant care over utilization measures as well as a need for more inclusive payment models that appropriately reflect the dual nature of many AHF therapies.
CONTEXT: Evaluation of end-of-life care is a key element in quality improvement, and population-based mortality follow-back designs have been used in several countries. This design was adapted to evaluate a Good Death in Japan.
OBJECTIVES: This study aimed to explain the scientific background and rationale for assessing the feasibility of a mortality follow-back survey using a randomized design.
DESIGN: We utilized a cross-sectional, questionnaire survey to assess feasibility using response rate, sample representativeness, effect on response rate with two methods, and survey acceptability.
SETTING/PARTICIPANTS: The subjects were 4,812 bereaved family members of patients who died from the major five causes of death: cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure, using mortality data.
RESULTS: Overall, 682 (14.2%) questionnaires could not be delivered, and 2,294 (55.5%) family members agreed to participate in the survey. There was little difference in the distribution of characteristics between the study subjects and the full population, and sample representativeness was acceptable. Sending the questionnaire with a pen achieved a higher response rate than without (weighted: 48.2% vs. 40.8%; p<0.001). In follow-up contact, there was no difference in response rate between resending the questionnaire and a reminder letter alone (weighted: 32.9% vs. 32.4%; p=0.803). In total, 84.8% (weighted) of the participants agreed with improving quality of care through this kind of survey.
CONCLUSIONS: This study demonstrated the feasibility of conducting a population-based mortality follow-back survey using a randomized design. An attached pen with the questionnaire was effective in improving the response rate.
Purpose: The purpose of the study is to capture goals expressed by older adults with functional limitations and their caregivers.
Methods: Through focus groups and interviews, 76 older adults with =1 activity of daily living limitation and 28 family/friend caregivers were asked about what mattered most to them and their goals for care. Transcripts were coded using an existing taxonomy. Goals that did not fit the taxonomy were assigned new codes.
Results: We identified more than 50 goals in eight domains. Domains included (a) Medical Care; (b) Quality of Life: Physical; (c) Quality of Life: Social and Emotional; (d) Access to Services and Supports; (e) Caregiver Needs and Concerns; (f) End of Life; (g) Independence; and (h) Acceptable Housing.
Conclusion: While there is overlap between identified goals and the existing taxonomy, new goals emerged. The goal domains identified could serve as a framework to improve and measure the quality of goal-oriented care for older adults with complex needs.
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (=10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with =10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education
BACKGROUND: Few studies have specifically addressed quality of life issues for elderly hospice patients. The purpose of this study is to explore various factors and service patterns of the quality of life of end-of-life care for the elderly.
METHODS: We collect the data and make small-scale exploratory study via semi-structured individual interviews. Data were collected from the family of 2 elderly cancer patients receiving hospice services, and the data were analyzed qualitatively.
RESULTS: After investigation, we found that elderly people in hospice care, regardless of age, are suffering from physical and psychological pain and do not want to spend the rest of their lives in the hospital, but want to die in their own homes.
CONCLUSIONS: Both hospitalization and in-home care can improve resource utilization, and the key is to find various factors affecting the quality of life. Improving the quality of life is what patients and their families need most.
BACKGROUND: Cystic fibrosis (CF) is a life-limiting disease that results in premature death mainly due to respiratory failure. Literature suggests that for many people with CF end-of-life wishes are discussed too late or not at all, with most dying in hospital. The aim of this project was to improve end-of-life care for adults with CF.
DESIGN: Three improvement cycles were carried out over a 2-year period in one of the largest adult CF centres in Europe. The first cycle involved implementing regular multidisciplinary team (MDT) debriefs after a patient death with increased education. The second cycle involved codesigning a CF-specific advance care plan (ACP) with patients, families, bereaved relatives and experts across the UK, then implementing this into our service. The final cycle was designing a CF-specific end of life, online course for clinicians. Success was measured by: use of ACP and whether patients had died in their preferred location, patient feedback via a survey and satisfaction with the online course using a postcourse report.
RESULTS: The number of patients given the opportunity to discuss their end of life wishes increased from 10% to 85%. The number of patients who died in their preferred location increased from 7% to 85% over the 2-year project time. Patient feedback has been overwhelmingly positive. The key barrier has been changing MDT culture, overcoming this required the engagement of the whole team. The online course has been successful with 258 participants to date from 26 countries.
CONCLUSION: Education, staff support and a CF-specific ACP document empowered healthcare professionals to initiate difficult conversations to improve end-of-life care.
PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer.
METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups.
RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1).
CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.
Patients with hematologic malignancies are thought to receive more aggressive end-of-life (EOL) care and have suboptimal hospice use compared with patients with solid tumors, but descriptions of EOL outcomes from comprehensive cohorts have been lacking. We used the population-based Surveillance, Epidemiology, and End Results-Medicare dataset to describe hospice use and indicators of aggressive EOL care among Medicare beneficiaries who died of hematologic malignancies in 2008-2015. Overall, 56.5% of decedents used hospice services for median 9 days (interquartile range, 3-27), 33.0% died in an acute hospital setting, 36.8% had an intensive care unit (ICU) admission in the last 30 days of life, and 13.3% received chemotherapy within the last 14 days of life. Hospice use was associated with 96% lower probability of inpatient death (adjusted risk ratio [aRR], 0.038; 95% confidence interval [CI], 0.035-0.042), 44% lower probability of an ICU stay in the last 30 days of life (aRR, 0.56; 95% CI, 0.54-0.57), and 62% decrease in chemotherapy use in the last 14 days of life (aRR, 0.38; 95% CI, 0.35-0.41). Hospice enrollees spent on average 41% fewer days as inpatient during the last month of life (adjusted means ratio, 0.59; 95% CI, 0.57-0.60) and had 38% lower mean Medicare spending in the last month of life (adjusted means ratio, 0.62; 95% CI, 0.61-0.64). These associations were consistent across histologic subgroups. In conclusion, EOL care quality outcomes and hospice enrollment were suboptimal among older decedents with hematologic cancers, but hospice use was associated with a consistent decrease in aggressive care at EOL.
AIMS: Develop and psychometrically assess the Palliative Nursing Care Quality Scale (PNCQS, escala de Calidad del Cuidado Enfermero Paliativo, CCEP, in Spanish). An interview-based qualitative study (1) was conducted to verify construct validity evidence, with psychometric properties of reliability and validity verified by two quantitative studies (2 & 3).
DESIGN: Quantitative instrumental, correlational, and cross-sectional study.
METHODS: Study 1 was carried out with 10 key informants. For Study 2, a sample of 103 nursing professionals was obtained and 176 nurses from palliative care resources in Spain participated in Study 3. Data were collected between May 2017 - May 2018.
RESULTS: Evidence of adequate reliability (internal consistency) and validity was found. The confirmatory factor model yielded a single latent factor for the 20 items, with adequate goodness-of-fit indices. The convergent validity data showed that the highest correlations were with the Dedication subscale of the Utrecht Work Engagement Scale and the Personal Growth subscale of Psychological Well-being, with values of 0.35 and 0.34, respectively (p < 0.01 in both cases).
CONCLUSION: The scale shows good psychometric properties, with high internal consistency and evidence of internal and convergent validity.
IMPACT: Proposing a valuable instrument which identifies good nursing in different areas of palliative care while also establishing quality indicators to guide nursing practice entails the recognition of autonomy in care. The resulting work tool can be used to systematize the assessment of nursing care in a process of open and continuous improvement.
BACKGROUND: Quality of care for patients dying in hospital remains suboptimal. A major problem is the identification of valid sources of information about the views and experiences of dying patients and their relatives.
AIM: This study aimed to estimate the agreement on quality of end-of-life care from the perspectives of bereaved relatives, physicians and nurses interviewed after the patients' death.
DESIGN: In this prospective study, we interviewed, after the patient death, the bereaved relatives, the attending physicians and the reference nurses, using the Toolkit After-death Family Interview and the View Of Informal Carers-Evaluation of Services (VOICES). Agreement was assessed using Lin's concordance correlation coefficient, Cohen's kappa, overall concordance correlation coefficient and Fleiss' kappa.
SETTING/PARTICIPANTS: We enrolled a consecutive series of 40 adult patients who died of cancer between January and December 2016 who had spent at least 48 hours in the medical oncology ward of the Santa Maria Hospital of Reggio Emilia, Italy.
RESULTS: We interviewed all physicians and nurses, and 26 (65.0%) out of 40 relatives. We found a poor agreement on overall quality of care among the three proxies (+0.21; -0.04 to 0.44), between relatives and nurses (+0.05; -0.39 to +0.47), and between relatives and physicians (+0.25; -0.13 to +0.57). A similar poor agreement was observed for all the other Toolkit and VOICES scales.
CONCLUSIONS: The agreement was rather poor, confirming previous results in different settings. Information from professional proxies should not be used for assessing the quality of care or for estimating missing information from bereaved relatives.
CONTEXT: Since Canada decriminalized medical assistance in dying (MAID) in 2015, clinicians and organizations have developed policies and protocols to implement assisted dying in clinical practice. Five years on, there is little consensus as to what constitutes high-quality care in MAID.
OBJECTIVES: To describe MAID clinicians' perspectives on quality of care in MAID, including challenges, successes, and clinical practice suggestions.
METHODS: We conducted an exploratory, multi-centre, qualitative study at four Canadian centres. Using a semi-structured interview guide, we conducted interviews with 20 health care providers. Interviews were transcribed and de-identified prior to analysis. Adopting a qualitative descriptive approach, we used a thematic analysis to identify primary and secondary themes in the interviews and practice suggestions to improve quality of care to patients who request MAID.
RESULTS: We identified three major themes. 1) Improving access and patient experience: clinicians described struggles in ensuring equitable access to MAID and supporting MAID patients and their families. 2) Supporting providers and sustainability: clinicians described managing MAID workload, remuneration, educational needs, and the emotional impact of participating in assisted dying. 3) Institutional support: descriptions of MAID communication tools and training, use of standardized care pathways, inter-professional collaboration, and human resource planning. Clinicians also described suggestions for clinical practice to improve quality of care.
CONCLUSION: Canadian health care providers described unique challenges in caring for patients who request MAID, along with practices to improve the quality of care.
BACKGROUND: Shenzhen is a rapidly growing city in China with a population of over 11 million. The Hong Kong University-Shenzhen Hospital (HKU-SZH) was established in 2012 as a new model of publicly funded health care in mainland China. The clinical oncology center of the HKU-SZH was launched in 2013 which pledged to provide integrated palliative care for advanced cancer patients. This study aims to retrospectively analyze the quality of end-of-life care amongst patients with advanced cancer during their last hospitalization in the HKU-SZH.
METHODS: Consecutive patients with advanced solid cancer who passed away in the HKU-SZH from March 2013 to February 2016 were analyzed. Clinical information regarding cancer diagnosis, anticancer treatments, and the aggressiveness of the treatment during the last month of life was recorded. The discussions on the Do-Not-Resuscitate (DNR) order with family members were reviewed.
RESULTS: From March 2013 to February 2016, 441 patients with advanced solid cancer passed away in the HKU-SZH. A minority of them (9.3%, 41/441) received cytotoxic chemotherapy in the last month of life. Younger patients had high odds of receiving chemotherapy in their last month of life (OR 2.6, P=0.006). Those who received chemotherapy in their last month of life showed a trend of higher odds of admission to the intensive care unit (OR 2.94, P=0.08). The vast majority of family members / care providers (92.3%, 407/441) consented to the DNR order suggested by oncologists. The rate of DNR acceptance in this cohort was higher than previous reports from mainland China. Within HKU-SZH, the rate was higher in the oncology center than in other departments (OR 5.1, P<0.001). The use of chemotherapy in the last month of life did not associated with the acceptance of DNR (OR 1.3, P=0.23).
CONCLUSIONS: The integrated oncology service of the new public hospital HKU-SZH achieved a satisfactory level of end-of-life care in patients with advanced cancer. Further studies are warranted to improve the early integration of palliative care service and to investigate the impact of palliative care on costeffectiveness of oncology service.
Context/Objective: Essential indicators of high-quality end-of-life care in intensive care units (ICUs) have been established but examined inconsistently and predominantly with small samples, mostly from Western countries. Our study goal was to comprehensively measure end-of-life-care quality delivered in ICUs using chart-derived process-based quality measures for a large cohort of critically ill Taiwanese patients.
Methods: For this observational study, patients with APACHE II score =20 or goal of palliative care and with ICU stay exceeding three days ( N = 326) were consecutively recruited and followed until death.
Results: Documentation of process-based indicators for Taiwanese patients dying in ICUs was variable (8.9%–96.3%), but high for physician communication of the patient's poor prognosis to his/her family members (93.0%), providing specialty palliative-care consultations (73.3%), a do-not-resuscitate order in place at death (96.3%), death without cardiopulmonary resuscitation (93.5%), and family presence at patient death (76.1%). Documentation was infrequent for social-worker involvement (8.9%) and interdisciplinary family meetings to discuss goals of care (22.4%). Patients predominantly (79.8%) continued life-sustaining treatments (LSTs) until death and died with full life support, with 88.3% and 58.9% of patients dying with mechanical ventilation support and vasopressors, respectively.
Conclusions: Taiwanese patients dying in ICUs heavily used LSTs until death despite high prevalences of documented prognostic communication, providing specialty palliative-care consultations, having a do-not-resuscitate order in place, and death without cardiopulmonary resuscitation. Family meetings should be actively promoted to facilitate appropriate end-of-life-care decisions to avoid unnecessary suffering from potentially inappropriate LSTs during the last days of life.
BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.
METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.
RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.
CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.
Objective: We examined whether older adults' health and well-being during their final year of life predicts end-of-life (EOL) quality of life (QOL) and quality of care (QOC).
Methods: Using data from deceased participants (n = 1125) in the 2011-2015 National Health and Aging Trends Study, we performed latent class analysis to identify profiles of health and well-being, and we examined the association between these classes and EOL QOL and QOC.
Results: Four classes were identified: healthy/happy (20%), frail/happy (37%), cognitively impaired/moderately distressed (27%), and highly impaired/highly distressed (16%). Persons in the highly impaired/highly distressed class showed a poorer QOL at the EOL, whereas those in the healthy/happy class reported a lower level of QOC at the EOL.
Discussion: The benefits of maintaining health and well-being often carry forward to EOL. Older adults with high impairment and distress merit greater attention such as assuring care and advance care plans.
Purpose: Patients' views on quality are important to improve person-centered palliative care. There is a lack of short, validated instruments incorporating patients' perspectives of the multidisciplinary palliative care services. The aim of this study was to develop a short form of the instrument Quality from the Patient's Perspective for Palliative Care (QPP-PC) and to describe and compare patients' perceptions of the subjective importance (SI) of care aspects and their perceptions of care received (PR).
Methods: A cross-sectional study was conducted in Norway including 128 patients (67% response rate) in four palliative care contexts. The QPP-PC, based on a person-centered theoretical framework, incorporating the multidisciplinary palliative care, comprises 4 dimensions; medical-technical competence, physical-technical conditions, identity-oriented approach and sociocultural atmosphere, 12 factors (49 items) and 3 single items. The instrument measures SI and PR. Development of the short form of the QPP-PC was inspired by previously published methodological guidelines. Descriptive statistics, paired t-tests, confirmatory factor analysis and Cronbach's a were used.
Results: The short form of QPP-PC consists of 4 dimensions, 20 items and 4 single items. Psychometric evaluation showed a root-mean-square error of approximation (RMSEA) value of 0.109 (SI). Cronbach's a values ranged between 0.64 and 0.85 for most dimensions on SI scales. Scores on SI and PR scales were mostly high. Significantly higher scores for SI than PR were present for the identity-oriented approach dimension, especially on items about information.
Conclusion: RMSEA value was slightly above the recommended level. Cronbach's a was acceptable for most dimensions. The short form of QPP-PC shows promising results and may be used with caution as an indicator of person-centered patient-reported experience measures evaluating the multidisciplinary palliative care for patients in a late palliative phase. However, the short version of QPP-PC needs to be further validated using new samples of patients.
BACKGROUND: Historically, it has been assumed that the Emergency Department (ED) is a place for maximally aggressive care and that Emergency Medicine Providers (EMPs) are biased towards life-prolonging care. However, emphasis on early recognition of code status preferences is increasingly making the ED a venue for code status discussions (CSDs). In 2018, our hospital implemented a policy requiring EMPs to place a code status order (CSO) for all patients admitted through the ED. We hypothesized that if EMPs enter CSDs with a bias toward life-prolonging care, or if the venue of the ED biases CSDs towards life-prolonging care, then we would observe a decrease in the percentage of patients selecting DNR status following our institution's aforementioned CSO mandate.
METHODS: We present a retrospective analysis of rates of DNR orders placed for patients admitted through our ED comparing six-month periods before and after the implementation of the above policy.
RESULTS: Using quality improvement data, we identified patients admitted through the ED during pre (n=7,858) and post (n=8,069) study periods. We observed the following: after implementation DNR preference identified prior to hospital admission from the ED increased from 0.4% to 5.3% (relative risk (RR) 12.5; 95% CI: 5.2-29.9), defining CS in the ED setting at the time of admission increased from 2.4% to 98.6% (p <0.001), and DNR orders placed during inpatient admission was unchanged (RR=0.97 (95% CI = 0.88-1.07)).
DISCUSSION: Our results suggest that the ED can be an appropriate venue for CSDs.
Context: In end-of-life care, rehabilitation for cancer patients is considered to be an important means for improving patients’ quality of death and dying (QODD).
Objectives: To determine whether the provision of rehabilitation for cancer patients in palliative care units is associated with the achievement of a good death.
Methods: This study involved a cross-sectional, anonymous, self-report questionnaire survey of families of cancer patients who died in palliative care units in Japan. We evaluated the Good Death Inventory (GDI) short version on a 7-point scale. A logistic regression model was used to calculate the propensity score. Covariates included in this model were survey year, patients’ characteristics, and families’ characteristics. The associations between rehabilitation and GDI were tested using trend tests after propensity score matching adjustment.
Results: Of the 1,965 family caregivers who received the questionnaires, available data was obtained from 1,008 respondents (51.2%). Among them, 285 (28.2%) cases received rehabilitation in palliative care units. There was no difference in total GDI score between the groups with and without rehabilitation. In exploratory analyses, patients receiving rehabilitation were significantly more likely to feel “maintaining hope and pleasure” (mean = 4.50 [standard error = 0.10] vs. 4.05 [0.11], respectively; effect size (ES)= 0.31; p-value = 0.003), “good relationships with medical staff,” (5.67 [0.07] vs. 5.43 [0.09], respectively; ES= 0.22; p-value = 0.035) and “being respected as an individual” (6.08 [0.06] vs. 5.90 [0.07], respectively; ES=0.19;p-value = 0.049) compared with patients not receiving rehabilitation.
Conclusion: Rehabilitation in palliative care units may contribute to several domains of QODD, particularly “maintaining hope and pleasure”. Further research is needed to investigate whether palliative rehabilitation contribute to the achievement of a good death.
The study objective was to explore the characteristics of rural general practice which exemplify optimal end-of-life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi-structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities.