BACKGROUND: This study examined factors associated with potentially burdensome end-of-life (EOL) transitions between care settings among older adults with advanced cancer in nursing homes (NHs).
METHODS: A retrospective analysis of deceased older NH residents with poor-prognosis solid tumors was conducted with Medicare claims and the Minimum Data Set. A potentially burdensome transition was defined as 2 or more hospitalizations or an intensive care unit admission in the last 90 days of life.
RESULTS: Among 34,670 subjects, many had moderate to severe cognitive impairment (53.8%), full dependence in activities of daily living (ADLs; 66.5%), and comorbidities such as congestive heart failure (CHF; 29.3%) and chronic obstructive pulmonary disease (34.1%). Only 56.3% of the patients used hospice at any time in the 90 days before death; 36.0% of the patients experienced a potentially burdensome EOL transition, and this was higher among patients who did not receive hospice (45.4% vs 28.7%; P < .01). In multivariable analyses, full dependence in ADLs (odds ratio [OR], 1.70; P < .01), CHF (OR, 1.48; P < .01), and chronic obstructive pulmonary disease (OR, 1.28; P < .01) were associated with a higher risk of burdensome EOL transitions. Those with do-not-resuscitate directives (OR, 0.60; P < .01) and impaired cognition (OR, 0.89; P < .01) had lower odds of burdensome EOL transitions.
CONCLUSIONS: NH residents with advanced cancer have substantial comorbidities and functional impairment, yet more than a third experience potentially burdensome EOL transitions. These findings help to identify a population at risk for poor EOL outcomes in order to target interventions, and they point to the importance of advanced care planning in this population.
Background: Patient-reported medical status and treatment goal are measures of prognostic understanding with demonstrated relationships to important clinical and patient-reported outcomes in the general cancer population. Among older adults, relationships between these measures and other patient-reported (quality of life [QOL], symptoms, functional impairment) and clinical (hospitalization risk, survival) outcomes remains unclear.
Methods: We enrolled patients =70 with advanced gastrointestinal cancers, collecting patient-reported medical status (terminally ill vs not), treatment goal (curative vs non-curative), QOL (EORTC-Elderly Cancer Patients), symptoms (Edmonton Symptom Assessment System [ESAS]), and functional impairment (activities of daily living [ADLs]). We also obtained information about hospitalizations and survival. To explore relationships between patient-reported medical status, treatment goal, QOL, symptoms, functional impairment, hospitalizations, and survival, we used regression models adjusted for age, sex, and education.
Results: Of 103 patients, 49.5% reported terminally ill status and 64.0% a non-curative treatment goal. Terminally ill status was associated with worse QOL (EORTC illness burden: 53.59 vs 35.26, p = 0.001), higher symptom burden (ESAS: 28.15 vs 16.79, p = 0.002), more functional impairment (ADLs: 3.63 vs 5.24, p = 0.006), greater hospitalization risk (HR = 2.41, p = 0.020), and worse survival (HR = 1.93, p = 0.010). We did not find associations between patient-reported treatment goal and these outcomes.
Conclusions: In older adults with advanced cancer, report of terminally ill status was associated with other important patient-reported and clinical outcomes, suggesting disease severity may inform illness perceptions. We did not find similar associations for patient-reported treatment goal, indicating that questions related to medical status and treatment goal measure different constructs and more nuanced measures are needed.
Background: The World Health Assembly urges members to build palliative care (PC) capacity as an ethical imperative. Nurses provide PC services in a variety of settings, including the home and may be the only health care professional able to access some disparate populations. Identifying current nursing services, resources, and satisfaction and barriers to nursing practice are essential to build global PC capacity.
Objective: To globally examine home health care nurses' practice, satisfaction, and barriers, regarding existing palliative home care provision.
Design: Needs assessment survey.
Setting/Subjects: Five hundred thirty-two home health care nurses in 29 countries.
Measurements: A needs assessment, developed through literature review and cognitive interviewing.
Results: Nurses from developing countries performed more duties compared with those from high-income countries, suggesting a lack of resources in developing countries. Significant barriers to providing home care exist: personnel shortages, lack of funding and policies, poor access to end-of-life or hospice services, and decreased community awareness of services provided. Respondents identified lack of time, funding, and coverages as primary educational barriers. In-person local meetings and online courses were suggested as strategies to promote learning.
Conclusions: It is imperative that home health care nurses have adequate resources to build PC capacity globally, which is so desperately needed. Nurses must be up to date on current evidence and practice within an evidence-based PC framework. Health care policy to increase necessary resources and the development of a multifaceted intervention to facilitate education about PC is indicated to build global capacity.
Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered “normal”: a societal and religious obligation. The values underpinning this might influence families’ perception of it.
Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.
Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.
Setting/participants: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.
Results: A total of 24 family caregivers participated. “Belief in caregiving” appeared to be the core phenomenon. This reflects the caregivers’ conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.
Conclusion: We developed a model of family caregivers’ experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.
Background: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress.
Aim: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death.
Design: Descriptive, cross-sectional study.
Setting/participants: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment’s importance.
Results: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it.
Conclusions: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.
The 41-item Comprehensive Assessment Tool for Cancer Caregivers (CNAT-C) is an English language survey for needs assessment developed and validated in South Korean cancer caregivers. The objective of this study was to validate both the English and a translated Chinese version of the CNAT-C in cancer caregivers in Singapore.
This was a cross-sectional survey where cancer caregivers completed the CNAT-C and World Health Organisation Quality-of-life BREF (WHOQOL-BREF) in English or Chinese. Cronbach's alpha was used to measure internal consistency. Convergent validity was assessed using Pearson correlation coefficients between CNAT-C scores and WHOQOL-BREF domains. For known groups validity, independent samples t-test was used to compare CNAT-C scores based on Karnofsky performance status.
There were 161 cancer caregivers - 80 answered the english version and 81 answered the Chinese version. For the English version, 33.8% were male and the lean age was 46.9 years. For the Chinese version, 27.2% were male and the mean age was 52.6 years. The total CNAT-C score and most domain scores showed good internal consistency, low to moderate convergent validity with WHOQOL-BREF domains and good known groups validity with performance status in both the English and Chinese versions. Domain 1 (health and psychological problems) in the Chinese version did not show convergent validity although there was evidence of known groups validity. Domain 5 (religious/spiritual support) also did not show validity in our study sample.
In summary, there was low to moderate convergent validity with the WHOQOL-BREF for both the English and translated Chinese versions. However, both language versions of CNAT-C showed good internal consistency and good known groups validity according to performance status, and both language versions of the CNAT-C can be used to assess the level of unmet needs for cancer caregivers in the Singapore context.
Palliative care is defined as care provided by a specially trained team of clinicians that is both patient and family centered and seeks to enhance quality of life throughout the continuum of illness. Multiple studies have reported benefits associated with integrating early palliative care with standard oncology care for patients with advanced cancer to address patients’ symptoms, understanding of their disease, coping strategies, and medical decision-making. Consequently, guidelines recommend early integration of palliative care for patients with advanced cancer, concurrently with disease-directed and life-prolonging treatment. Despite the established benefits and guideline recommendations for early integration of palliative care in oncology, many patients do not receive palliative care services or receive them late in the illness trajectory, potentially due to both patient and clinician misperceptions that palliative care is appropriate only after a patient has discontinued life-prolonging therapies. Thus, a growing body of literature has sought to demonstrate that palliative care improves patient outcomes without shortening survival.
Sur l'un des murs de la chambre d'hôpital est accrochée une reproduction des Tournesols de Vincent Van Gogh... Une fenêtre pour s'échapper du difficile tête-à-tête avec la maladie et la mort. Manuel s'est battu avec courage pendant près d'un an contre un cancer qui le ronge. Après une rémission pleine d'espoir, il est de nouveau hospitalisé. Seule devant l'issue fatale de la maladie, Gabrielle, son épouse, fait alors appel à deux de leurs meilleurs amis qui accompagneront Manuel dans ses derniers jours de vie.
Ce récit humaniste détaille au jour le jour les sentiments et les questions qui se posent face à l'agonie d'un être cher : comment échanger et se comporter avec lui ? Il aborde également les difficultés de communication avec l'institution hospitalière et revendique le droit à mourir dans la dignité. Où commence et où finit l'obstination à maintenir un malade en vie ?
Context: Research shows an increased symptom burden in young adult (YA) cancer patients compared with their older adult counterpart.
Objectives: The purpose of this study was to identify differences in clinical characteristics and related outcomes between YA and older adult cancer patients admitted for cancer-related pain.
Materials and Methods: We retrospectively identified 190 hospitalized patients in a single academic center with admissions for cancer-related pain. Patients were grouped into either "young adult" (18-39) or "older adult (>40) cohorts. We compared differences in patient characteristics and pain regimens.
Results: Median oral morphine equivalent per 24 hours was higher in the YA group (194 mg vs. 70 mg, p = 0.010). Younger patients received patient-controlled analgesia (PCA) more frequently (p = 0.023). The number of palliative care consults and adjuvants prescribed did not differ between groups (p > 0.05), althoughYAs more frequently had an inpatient pain anesthesia consult (p = 0.047).
Conclusion: Findings show increased opioid requirements and PCA use in YAs being treated for malignancy compared with their older adult counterpart.
This dissertation explores the existing barriers for early integration of palliative home care in oncology care and the differences between early and late involvement of palliative home care. Furthermore, an intervention model for early integration of palliative home care in oncology care is developed following the steps of the Medical Research Council Framework. This model is then tested in a pilot pre post study on its feasibility and wacceptability.
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BACKGROUND: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.
METHODS: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.
RESULTS: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.
CONCLUSIONS: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.
Kinesiology taping (KT) is used in musculoskeletal practice for preventive and rehabilitative purposes. KT is also used in cancer to manage lymphoedema, however, there is little information available about the extent of its use. The aim of the study was to gather views of healthcare professionals on the attitudes, beliefs, and clinical use of KT for managing symptoms and complications in cancer. This was a cross-sectional online questionnaire survey of healthcare professionals including UK-registered nurses, physiotherapists, occupational-therapists, lymphoedema-therapists, and pain physicians using a non-probability self-select sampling technique. A stakeholder event was organized to discuss the survey findings and gain insights into their relevance in cancer care. Seventy-two percent of respondents (96/134) reported not using KT while only 28% of respondents (38/134) reported using KT, the majority of which were physiotherapists and nurses. Respondents reported that they frequently used KT for managing lymphoedema/oedema and scar tissue, and comparatively less frequently for pain and breathlessness. Respondents reported that the most frequent adverse event was skin irritation and that KT was contraindicated or administered with caution for patients with open wounds or fragile skin, especially following radiotherapy. The main barriers to widespread use of KT in cancer were lack of its awareness and research evidence on efficacy. The views expressed by the stakeholders aligned closely with those found by the survey. Stakeholders suggested that there was a need for training and research on the use of KT for cancer care. In conclusion, healthcare professionals working in cancer care settings may not be aware of KT as a potential therapy for managing symptoms and complications.
Terminally ill cancer patients with limited life expectancies (LLEs) are often prescribed multiple medications to control acute symptoms associated with cancer such as dyspnoea, pain, nausea and vomiting, and anxiety. Medications are also commonly prescribed to prevent or treat other common, long-term comorbid conditions such as hypertension, diabetes mellitus and hyperlipidaemia. Early identification of unnecessary preventive medications at the end of life can improve quality of life. Limited research has investigated whether preventive medications are withdrawn in patients with terminal cancer. The aim of this project was to evaluate the prevalence of preventive medication use in terminally ill cancer patients with LLE of 6 months or less.
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Background: To avoid aggressive treatments at the end-of-life and to provide palliative care (PC), physicians need to terminate futile anti-cancer treatments and define the palliative goal of the treatment in time. This single center study assesses the practices used to make the decision that leads to treatment with a palliative goal, i.e., the PC decision and its effect on anti-cancer treatments at the end of life.
Material and methods: Patients with a cancer diagnosis treated in tertiary hospital during 1st January 2013 – 31st December 2014 and deceased by the end of 2014 were identified in the hospital database (N = 2737). Of these patients, 992 were randomly selected for this study. The PC decision was screened from patient records, i.e., termination of cancer-specific treatments and a focus on symptom-centered PC.
Results: The PC decision was defined in 82% of the patients during the last year of life (49% >30 days and 33% =30 days before death, 18% with no decision). The median time from the decision to death was 46 days. Systemic cancer therapy was given during the last month of life in 1%, 36% and 38% (p < .001) and radiotherapy 22%, 40% and 31% (p = .03) cases, respectively; referral to a PC unit was made in 62%, 22% and 11%, respectively (p < .001). In logistic regression analyses younger age, shorter duration of the disease trajectory and type of cancer (e.g., breast cancer) were associated with a lack or late timing of the PC decision.
Conclusion: The decision to initiate a palliative goal for the treatment was frequently made for cancer patients but occurred late for every third patient. Younger age and certain cancer types were associated with late PC decisions, thus leading to anti-cancer treatments continuing until close to the death with low access to a PC unit.
BACKGROUND: Cancer-related fatigue and loss of physical functioning are distressing symptoms which negatively impact the quality of life of people with advanced cancer. Physical activity has been shown to have positive effects on these symptoms in early-stage cancer, but previous research demonstrated an incongruence between people with advanced cancer's expressed interest and actual participation in a physical activity intervention.
AIM: To gain an in-depth understanding of the experience of activity and quality of life in people with advanced cancer, using a classic grounded theory approach.
DESIGN: Through the post-positivist lens of subtle realism, and informed by classic grounded theory methods, a two-phase, cross-sectional, qualitative study was conducted. For 7 days duration, participants wore an activPAL™ activity monitor and completed a daily record sheet, which were then used as qualitative probes for face-to-face, semi-structured interviews.
SETTING/PARTICIPANTS: A total of 15 people with advanced cancer, aged 18 years or older, and with a median survival of 100 days from time of study consent, were recruited from an outpatient department of a tertiary cancer centre in Alberta, Canada.
FINDINGS: Maintaining their responsibilities, no matter how small, was the prime motive for participants' behaviour. For people with advanced cancer, the minimum level of responsibility was dynamic and unique. It was achieved through a multifaceted interaction between the perceived benefits, prevailing conditions and mechanisms.
CONCLUSION: This grounded theory enables understanding of activity as a mechanism through which responsibility is managed and may inform future behavioural interventions in people with advanced cancer.
PURPOSE: Although rates of hospice use have increased over time, insurance plan- and racial/ethnic-based disparities in rates have been reported in the USA. We hypothesized that increased rates of hospice use would reduce or eliminate insurance plan-based disparities and that racial/ethnic disparities would be eliminated in managed care (MC) insurance plans.
METHODS: We studied the use of hospice care in the final 30 days of life among 40,184 elderly Texas Medicare beneficiaries who died from primary breast, colorectal, lung, pancreas, or prostate cancer between January 1, 2007 and December 31, 2013, using statewide Medicare claims linked to cancer registry data. Rates of hospice use were computed by race/ethnicity and insurance plan (MC or fee-for-service (FFS)). We used logistic regression to account for the impact of confounding factors.
RESULTS: Rates of hospice use increased significantly over time, from 68.9% in 2007 to 76.1% in 2013. By 2013, differences in hospice use rates between MC and FFS plans had been reduced from 10% to < 5%. However, after accounting for insurance plan and confounding factors, racial/ethnic minority beneficiaries' hospice use was significantly lower than non-Hispanic white beneficiaries' (p < 0.0001). This disparity was observed among both FFS and MC beneficiaries.
CONCLUSIONS: Hospice use in the final 30 days of life has increased among elderly cancer patients in Texas, virtually eliminating the difference between FFS and MC insurance plans. Despite these positive trends, racial/ethnic-based disparities persist. These disparities are not explained by confounding factors. Future research should address social and behavioral influences on end-of-life decisions.
CONTEXT: The aging of the world's population increasingly calls on older people to care for their cancer relatives. This scenario confronts clinicians involved with end-of-life care with an imposing challenge: elderly family caregivers could have a different perception of the burdens associated with assistance compared to their younger counterparts. Palliativists need to know what limits and resources of these new age categories of caregivers could be for a global management of dying patients with cancer and their family.
OBJECTIVES: To evaluate the caregiver burden in family caregivers supporting dying patients with cancer in order to compare the differences between 2 different caregivers age groups (younger vs elderly population).
METHODS: This is a cross-sectional study. A total of 174 family caregivers of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into 2 subgroups aged <65 (younger group) and =65 years old (elderly group).
RESULTS: Compared with younger caregivers, the elderly group reported significantly higher scores in the CBI-developmental subscale (P = .009) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. No further differences were found between the 2 age groups in the other CBI scores (time-dependent, physical, social, emotional, and overall score).
CONCLUSION: Elderly caregivers are at high risk for experiencing developmental burden. This finding could prompt mental health professionals to pay greater attention to the value that assistance to the family member can have on their personal story and on that of the family or couple.
Aggressive resource utilization for patients with cancer at the end of life has been associated with poor outcomes for patients and their families. To our knowledge, no previous studies have characterized resource utilization as a proxy for quality end-of-life care in hospitalized patients awaiting discharge to hospice by physician and advanced practice providers (APPs). We conducted a retrospective cohort study to examine resource utilization and the quality metrics for end-of-life care in patients at Memorial Sloan Kettering Cancer Center from the date of hospice decision to discharge. Patients under the care of APP teams were less likely to receive laboratory testing (50% vs 59%, P = .046) and received fewer tests than those with house staff teams, though performance on end-of-life quality metrics was similar. Our findings suggest APPs may improve quality of end-of-life care by avoiding unnecessary or aggressive measures compared to house staff.
PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience.
METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling.
RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity.
CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
BACKGROUND: In Denmark, a tax-based universal healthcare setting, drug reimbursement for terminal illness (DRTI) should be equally accessible for all terminally ill patients. Examining DRTI status by regions provides new knowledge on inequality in palliative care provision and associated factors. This study aims to investigate geographical variation in DRTI among terminally ill cancer patients.
METHODS: We linked socioeconomic and medical data from 135 819 Danish cancer decedents in the period 2007-15 to regional healthcare characteristics. We analyzed associations between region of residence and DRTI. Prevalence ratios (PR) for DRTI were estimated using generalized linear models adjusted for patient factors (age, gender, comorbidity and socioeconomic profile) and multilevel models adjusted for both patient factors and regional healthcare capacity (patients per general practitioner, numbers of hospital and hospice beds).
RESULTS: DRTI allocation differed substantially across Danish regions. Healthcare capacity was associated with DRTI with a higher probability of DRTI among patients living in regions with high compared with low hospice bed supply (PR 1.13, 95% CI 1.10-1.17). Also, the fully adjusted PR of DRTI was 0.94 (95% CI 0.91-0.96) when comparing high with low number of hospital beds. When controlled for both patient and regional healthcare characteristics, the PR for DRTI was 1.17 (95% CI 1.14-1.21) for patients living in the Central Denmark Region compared with the Capital Region.
CONCLUSION: DRTI status varied across regions in Denmark. The variation was associated with the distribution of healthcare resources. These findings highlight difficulties in ensuring equal access to palliative care even in a universal healthcare system.