BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs.
PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life.
METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted.
RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%).
CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.
BACKGROUND: Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown.
METHODS: A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end-of-life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do-not-resuscitate status). A single-center retrospective review was conducted on patients aged 0-18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death.
RESULTS: Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities.
CONCLUSIONS: Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end-of-life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.
OBJECTIVE: In 2015, a Chaplaincy Research Consortium generated a model of human spirituality in the palliative care context to further chaplaincy research. This article investigates the clinical fit of (a) the model's fundamental premise of universal human spirituality and (b) its 4 proposed stage descriptors (Discovery, Dialogue, Struggle, and Arrival).
METHOD: First, we collected qualitative data from an interdisciplinary palliative care focus group. Participants (n = 5) shared responses to the statement "the human spirit has essential commonalities across [ … ] groups and [ … ] attributes." Participants also shared vignettes of spiritual care, and 48 vignettes illustrating patients' spiritual journeys were subsequently taken from the transcript of that group. Second, we invited different mixed discipline palliative care professionals (n = 9) to individually card sort these vignettes to the model's 4 stage descriptors; we conducted pattern analysis on the results. We then administered a third step, convening six physicians to complete the card sort again, this time allowing designation of cards to one or two of the 4 stage descriptors.
RESULTS: Focus group participants were supportive of the model's all-encompassing definition of spirituality. The concept of "connectedness" was a shared focus for all participants, connectedness and spirituality appearing almost synonymous. Pattern analysis of assigned 48 vignettes to the 4 stages showed stronger consensus around Discovery and Arrival than Struggle and Dialogue. Results of the additional card sort suggested Struggle and Dialogue involve oscillation and are harder to think of as a steady state as distinct from processes associated with Discovery or Arrival.
SIGNIFICANCE OF RESULTS: "Connectedness" is a productive concept for modeling human spiritual experience near the end of life. As one healthcare professional said: "this connectedness piece is [ … ] what I always look for … " Although further work is needed to understand struggle and dialogue elements in peoples' spiritual journeys, discovery and arrival shared consensus among participants.
Background: People living with head and neck cancer frequently encounter challenges in their treatment with multimodality therapy and risk of side effects. Ensuring access to and use of interdisciplinary supportive and palliative care is often challenging given the complex needs and unfamiliar treatment experiences.
Objectives: Describe the CARE Clinic Plus ONN Gate Opener as an approach to enhance access to and utilization of interdisciplinary supportive and palliative care for people living with head and neck cancer.
Discussion: The Cancer Appetite and Rehabilitation (CARE) Clinic model offers interdisciplinary supportive and palliative care to patients at risk, including those living with head and neck cancer. The oncology nurse navigator (ONN) serves as gate opener, ensuring that those individuals receive appropriate assessment with personalized education and referrals for timely prehabilitation, rehabilitation, and palliation.
Conclusions: The ONN, as a gate opener for people living with head and neck cancer, offers an innovative approach to elevate the patient experience and improve clinical outcomes through interdisciplinary supportive and palliative care when working in collaboration with the CARE Clinic. Guidance for other centers to adapt our model to meet their patient and family needs concludes our discussion.
PURPOSE OF REVIEW: People living with serious mental illness are at a higher risk of developing respiratory problems that can lead to increased morbidity and early mortality. This review aimed to identify recent advances in care provision for people with respiratory problems and preexisting serious mental illness to ease symptom burden and reduce the risk of premature mortality.
RECENT FINDINGS: Intervention-based studies in this area are scarce. The evidence reviewed originated from observational studies. Concluding comments from the synthesis suggest there are specific needs for proactive screening of respiratory function as part of routine physical health checks across care settings for people living with serious mental illness, more stringent monitoring of comorbid chronic lung conditions and increased attention in reducing the frequency respiratory infections. Integrated services across care settings are needed to support people with serious mental illness to limit the impact of modifiable lifestyle factors known to be detrimental to respiratory health, such as smoking.
SUMMARY: Key priorities are identified to improve accessibility and inclusivity of respiratory care pathways for people living with serious mental illness to support early detection and proactive monitoring of respiratory problems to help reduce the risk of early mortality.
PURPOSE OF REVIEW: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, and barriers to, delivery of supportive and palliative respiratory care to these populations. These structurally vulnerable populations are known to be growing, their health behaviours more risky, and their morbidity and mortality higher, with evidence of accelerated ageing.
RECENT FINDINGS: Most studies identified investigated prevalence of respiratory conditions, which were found to be high. In contrast, only one study directly explored supportive and palliative care (in a prison population) and none considered or addressed palliative and end-of-life needs of these populations, or mechanisms to address them. There was an absence of qualitative work and studies of the impact on, or role of, family, friends or informal networks.
SUMMARY: There is a need for evidence-based interventions to reduce the risk of communicable respiratory conditions and a greater understanding of disease trajectories and management for these vulnerable populations, including provision of accessible appropriate supportive, palliative and end-of-life care.
Background: Cystic Fibrosis (CF) is a life-limiting illness. Audit of the care of patients dying of CF has not been published to date.
Methods: Newcastle and Oxford teams adapted the National Audit of Care at the End of Life and agreed additional questions that were particularly pertinent for patients dying as a consequence of their CF. Data were extracted and analysed for 15 patients.
Results: On recognition that the patient was dying, the CF teams were less good at reviewing the need for physiological observations (50% vs national 70%) but better at reviewing the need for capillary blood glucose monitoring, oxygen support and intravenous antibiotics compared with the national average for all patients.
On recognition that the patient was dying, the CF teams were better at assessing pain (87% vs national 80%) and breathlessness (93% vs national 73%), but less good at assessing nausea and vomiting (47% vs national 74%).
There was documented evidence that 100% of families and 64% of patients were aware that the patient was at risk of dying.
Conclusion: Comparing care of this sample of patients dying with CF against the national data is a useful first step in understanding that many aspects of care are of high quality. This audit identifies the need to offer earlier conversations to patients as their voices may be missing from the conversation. Undertaking a national audit would provide a more reliable and a fuller picture.
BACKGROUND: People living with long-term neurological conditions (LTNC) often require palliative care. Rehabilitation medicine specialists often coordinate the long-term care of these patients.
OBJECTIVE: The aim of the present review was to undertake systematic literature searches to identify the evidence on palliative care for people with LTNC to guide rehabilitation medicine specialists caring for these patients in the UK.
METHODS: We searched for evidence for (1) discussion of end of life, (2) planning for end-of-life care, (3) brief specialist palliative care interventions, (4) support for family and carers, (5) training of rehabilitation medicine specialists in palliative care, and (6) commissioning of services. The databases searched were MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, NHS Economic Evaluation Database and Health Technology Assessment Database. Evidence was assimilated using a simplified version of the Grading of Recommendations Assessment, Development and Evaluation method.
RESULTS: We identified 2961 records through database searching for neurological conditions and 1261 additional records through database searches for specific symptoms. We removed duplicate records and conference presentations. We screened 3234 titles and identified 330 potentially relevant abstracts. After reading the abstracts we selected 34 studies for inclusion in the evidence synthesis.
CONCLUSIONS: From the evidence reviewed we would like to recommend that we move forward by establishing a closer working relationship with specialists in palliative care and rehabilitation medicine and explore the implications for cross-specialty training.
BACKGROUND: Fibrotic interstitial lung diseases (f-ILDs) are often progressive and incurable. As patients experience significant symptoms and have a poor prognosis, early palliative care referral is recommended.
OBJECTIVE: To examine the care delivered to patients with f-ILD during the terminal hospital admission and the past 2 years of life.
METHODS: A retrospective audit was performed for consecutive patients who died from f-ILD at 2 Australian teaching hospitals between January 1, 2012, and December 31, 2016.
RESULTS: Of 67 patients, 44 (66%) had idiopathic pulmonary fibrosis. Median age was 78 years. Median respiratory function: forced expiratory volume in 1 second 69.0% predicted (interquartile range [IQR]: 58.0%-77.0%), forced vital capacity 64.0% predicted (IQR = 46.8%-74.3%), and diffusing capacity of carbon monoxide 36.0% predicted (IQR = 31.0%-44.0%). In the 2 years prior to the terminal admission, 38 (57%) patients reported severe breathlessness and 17 (25%) used opioids for symptom relief. Twenty-four (36%) patients received specialist palliative care (SPC) and 11 (16%) completed advance care planning. During the terminal admission, 10 (15%) patients were admitted directly under SPC. A further 33 (49%) patients were referred to SPC, on average 1 day prior to death. Sixty-three (94%) patients received opioids and 49 (73%) received benzodiazepines for symptom management. Median starting and final opioid doses were 10 and 23 mg oral morphine equivalent/24 hours, respectively. Opioids were commenced on average 2 (IQR 1-3) days prior to death.
CONCLUSIONS: Although most patients were identified as actively dying in the final admission, referral to SPC and use of palliative medications occurred late. Additionally, few patients accessed symptom palliation earlier in their illness.
The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses.
RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
PURPOSE: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement.
METHODS: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160).
RESULTS: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.
CONCLUSIONS: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
Hepatocellular carcinoma is a common cancer with a poor prognosis, associated with high economic costs and a significant burden of disease. While it is often asymptomatic in the early stages, patients may experience great discomfort from advanced disease, treatment adverse effects or decompensation of underlying cirrhosis. Palliative care has the potential to markedly improve quality of life, physical and psychological symptoms in patients with end-stage liver disease, and has been shown to prolong survival in some non-hepatocellular carcinoma malignancies. However, this service is underutilized in hepatocellular carcinoma and referrals are frequently late due to factors such as stigmatization, inadequate resources, lack of education for non-palliative care physicians and inadequate modelling for integration of palliative and supportive care within liver disease services. In the future, education workshops, population-based awareness campaigns, increased funding and improved models of care, may improve the uptake of palliative care and subsequently optimize patient care, particularly towards the end of life.
L’offre de soins à domicile a beaucoup évolué ces vingt dernières années pour répondre aux besoins de la population et pour s’adapter aux contraintes du système de santé. Après les réseaux de santé, les maisons des réseaux, puis les plateformes territoriales d’appui, de nouveaux dispositifs d’aide à la coordination permettent aux soignants du domicile d’organiser la prise en charge des personnes en situation de santé complexe. Illustration avec un réseau de soins palliatifs en Normandie.
Background: Ohana Health Plan, Inc., (OHP) is one of the first managed care organizations offering supportive care services targeted to superutilizers. Bristol Hospice Hawaii, LLC, partnered with OHP to provide interdisciplinary supportive care services to home-bound OHP members.
Objectives: The purpose of this study was to measure symptom relief, satisfaction, resource utilization, and cost savings associated with supportive care.
Design: Prospective study.
Setting: Over 12 months, 27 superutilizer members residing in the community were referred by OHP, 21 members were enrolled into supportive care.
Measurements: Data were collected upon admission and repeatedly thereafter using the Edmonton Symptom Assessment Scale (ESAS) and the Missoula–Vitas Quality of Life Index (MVQOLI). The Family Satisfaction with Advanced Cancer Care (FAMCARE) Scale was administered at discharge. Emergency department (ED) visits and hospital utilization were tracked.
Results: Median age was 63 years; more than half had cardiac diagnoses. Majority of members were Hawaiian and other Pacific Islander. Median length of stay in supportive care was 90 days. Five (23%) members enrolled in hospice following supportive care. Symptom improvement occurred in pain (p < 0.0001), anxiety (p = 0.0052), and shortness of breath (p = 0.0447). This model has shown a 79.5% reduction of ED visits per thousand members and a 75% reduction of hospitalizations per thousand. Overall net savings was 36%. Discussions and documentation of end-of-life wishes increased from 23% to 85%.
Conclusion: Supportive care is highly effective in reducing costs associated with superutilizers. Our experience demonstrates the effectiveness of supportive care approaches in this population through improved care and lower health care costs overall.
Background: Many patients with advanced cancer diagnosed following emergency presentation will likely benefit from palliative care (PC) interventions. This study assessed the potential patient-related barriers to
inpatient PC consultation among patients who were newly diagnosed with cancer after emergency admission (EA) and received only supportive care.
Methods: This observational study retrospectively obtained data on all patients who were admitted to our hospital after emergency transfer between January 2012 and November 2016. We identified patients for
whom cancer was listed as the primary disease in the post-hospitalization discharge summary. Out of these patients, we selected those with newly diagnosed cancer and determined whether they were referred for
inpatient PC consultation.
Results: This study recruited 141 patients with newly diagnosed cancer after EA (1.2% of all emergency transfer cases). Following diagnosis, the PC team intervened in 29.8% of all the patients enrolled in this
study and in 53.3% of patients who received only supportive care. In patients who received only supportive care, the patients who were not referred for PC consultation were significantly more likely to have shorter
survival time and less likely to receive disclosure about their cancer diagnosis than patients who were referred.
Conclusions: According to this study, short survival time and no disclosure of cancer diagnosis are potential patient-related barriers to inpatient PC consultation among patients with newly diagnosed cancer after EA.
Context: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
Objectives: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
Methods: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
Results: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Conclusion: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
OBJECTIVE: Patients with head and neck cancer (HNC) face a unique set of unmet needs. A subset of these patients experience symptom control challenges related to their disease burden and treatments. A multidisciplinary approach involving palliative medicine is underutilized but crucial to identify and address these concerns. There is limited information on palliative integration with head and neck oncology.
STUDY DESIGN: Case series with planned data collection.
SETTING: Academic quaternary care center.
SUBJECTS AND METHODS: We provide descriptive analyses of patients with HNC, including psychodiagnostic assessment and validated quality-of-life screening, from patients' first encounter at outpatient palliative medicine.
RESULTS: HNC (N = 80) contributed the greatest number of palliative referrals (25%) between 2010 and 2012. This cohort was 74% male and 79% Caucasian with a mean age of 53 years (95% CI, 51.1-54.9) and with stage IV disease of the oral cavity (28%) or oropharynx (31%). Sixty-three percent of patients had no evidence of disease. Seventy-five percent had a psychological history based on DSM-IV criteria (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition), and 70% had a history of substance use disorder. The most distressing quality-of-life concerns were pain, housing and financial problems, and xerostomia.
CONCLUSIONS: Patients with HNC who were referred to palliative medicine are burdened by multiple physical, psychological, substance use, and social challenges. We recommend comprehensive cancer-specific screening, such as the James Supportive Care Screening, to triage patients to appropriate supportive care services. Palliative care is one of many services that these patients may need, and it should be utilized at any point of the disease trajectory rather than reserved for end-of-life care.
Background: Supportive and palliative care worldwide is recognized as one of the six main cancer control bases and plays an important role in managing the complications of cancer. Limited studies have been published in the field of this policy analysis in the world.
Aim: This study aimed to analysis the policy-making process of supportive and palliative cancer care in three countries.
Methodology: This qualitative study is a part of a comparative study. The data were collected through reviewing scientific and administrative documents, the World Health Organization website and reports, government websites, and other authoritative websites. Searches were done through texts in English and valid databases, in the period between 2000 and 2018. To investigate the policy process, heuristic stages model is implemented consisting of the four stages: agenda setting, policy formulation, policy implementation, and policy evaluation.
Results: The findings of the study were categorized based on the conceptual model used in four areas related to the policy process, including agenda setting, policy formulation, policy implementation, and evaluation of cancer palliative care policies.
Conclusion: Several factors are involved in how cancer palliative care policy is included in policy-makers' agenda, understanding a necessity, raising public awareness, and acceptance as a result of sensing the physical and nonphysical care outcomes. The stages of development, implementation, and evaluation of palliative care in countries regardless of existing differences are a function of the health system and context of each country.
A key component of treatment for all people with advanced kidney disease is supportive care, which aims to improve quality of life and can be provided alongside therapies intended to prolong life, such as dialysis. This article addresses the key considerations of supportive care as part of integrated end-stage kidney disease care, with particular attention paid to programs in low- and middle-income countries. Supportive care should be an integrated component of care for patients with advanced chronic kidney disease, patients receiving kidney replacement therapy (KRT), and patients receiving non-KRT conservative care. Five themes are identified: improving information on prognosis and support, developing context-specific evidence, establishing appropriate metrics for monitoring care, clearly communicating the role of supportive care, and integrating supportive care into existing health care infrastructures. This report explores some general aspects of these 5 domains, before exploring their consequences in 4 health care situations/settings: in people approaching end-stage kidney disease in high-income countries and in low- and middle-income countries, and in people discontinuing KRT in high-income countries and in low- and middle-income countries.