COVID-19 has overwhelmed the capacity of health care systems, limiting access to supportive and palliative care for patients with advanced cancer. Telemedicine has emerged as a tool to provide care continuity to patients while limiting the risk of contagion. However, implementing telemedicine in resource-limited settings is challenging. We report the results of a multidisciplinary patient-navigator-led telemedicine supportive care program in Mexico City. One-hundred sixty-three telemedicine interventions were provided to 45 patients (median age 68, 57% female). A quarter of the patients had less than or equal to elementary school education, and 15% lived in a rural area. The most common interventions were psychological care (33%), pain and symptom control (25%), and nutritional counseling (13%). Half of the interventions were provided by video conferencing. The most common patient-reported barrier was limited experience using communication technology (). Our results demonstrate the feasibility of providing supportive and palliative care interventions using telemedicine in resource-limited settings.
En 2006, à la suite de la circulaire DHOS 2005/101, nous avons créé une réunion multidisciplinaire de soins de support. Il existe très peu de données dans la littérature dans ce domaine et nous avons souhaité reporter ici notre expérience. Pour cela, les dossiers présentés sur les six premiers mois de l’année 2006, 2008, 2010, 2012, 2014, 2016 et 2018 ont été analysés, soit 405 situations correspondant à 352 patients. La majorité était constituée de femmes (55,7 %, n = 196) et l’âge médian lors de la présentation était de 66 ans [20–93]. Dans 8 % (n = 32) des situations, la prise en charge était curative, dans 58 % (n = 233) des cas, palliative avec traitement spécifique en cours, dans 31,3 % (n = 126) palliative exclusive et enfin 2,7 % (n = 11) des discussions concernaient l’après cancer. Le nombre médian de participants était de 10 avec une présence régulière des oncologues, de l’équipe de soins palliatifs, de l’assistante sociale, la diététicienne, la kinésithérapeute et la psychologue. Les deux motifs les plus fréquents de présentation étaient le devenir et une demande d’intervention de l’équipe mobile de soins palliatifs. La décision de la réunion était relativement bien appliquée avec un taux de conformité de 81,8 %. Cependant, on peut regretter le délai court de 1,5 mois entre le décès et la concertation. La création d’un département transversal de soins de support a fait prendre de l’ampleur à cette réunion et il serait pertinent dans un avenir proche de vérifier si elle permet une meilleure anticipation.
COVID-19 was first reported in Wuhan, China, in December 2019; it rapidly spread around the world and was declared a global pandemic by the World Health Organization in March 2020. The palliative care program at the Princess Margaret Cancer Centre, Toronto, Canada, provides comprehensive care to patients with advanced cancer and their families, through services including an acute palliative care unit, an inpatient consultation service, and an ambulatory palliative care clinic. In the face of a global pandemic, palliative care teams are uniquely placed to support patients with cancer who also have COVID-19. This may include managing severe symptoms such as dyspnea and agitation, as well as guiding advance care planning and goals of care conversations. In tandem, there is a need for palliative care teams to continue to provide care to patients with advanced cancer who are COVID-negative but who are at higher risk of infection and adverse outcomes related to COVID-19. This paper highlights the unique challenges faced by a palliative care team in terms of scaling up services in response to a global pandemic while simultaneously providing ongoing support to their patients with advanced cancer at a tertiary cancer center.
The aim of supportive cancer care is to actively manage patients' physical, psychologic, and spiritual concerns, independent of prognosis. Complementary and integrative medicine (CIM) is increasingly gaining greater acceptance and support for its beneficial value in supportive cancer care. The utilization of CIM early in the cancer trajectory, during treatment and during survivorship periods, as well as during end of life, addresses a great number of unmet needs that patients affected by cancer raise. In addition, recent research supports the role that CIM has in reducing suffering and distress both physically and emotionally, as well as enhancing well-being in patients affected by cancer and their families. CIM is increasingly seen not only as an adjunctive add-on treatment or perhaps even as a luxury item for the affluent but actually as an important component in supportive cancer care for all patients. It addresses many aspects of care that sometimes are not being addressed with conventional means. With the increase in CIM-related research, as well as the increased clinical experience in oncology programs worldwide, CIM is gradually becoming an essential ingredient in supportive and palliative cancer care. In this narrative review, the authors look systematically at the contribution that CIM has in supportive care in each stage of the cancer trajectory, reflecting the needed role that CIM has in supportive care. The presented data will provide a sampling of the available clinical research for each of the broad stages being described.
INTRODUCTION: Patients with haematological malignancies may not be receiving appropriate referrals to palliative care and continuing to have treatments in the end stages of their disease. This systematic review of qualitative research aimed to synthesise healthcare professionals' (HCPs) views and experiences of palliative care for adult patients with a haematologic malignancy.
METHODS: A systematic search strategy was undertaken across eight databases. Thomas and Harden's approach to thematic analysis guided synthesis on the seventeen included studies. GRADE-GRADEQual guided assessment of confidence in the synthesised findings.
RESULTS: Three analytic themes were identified: (a) "Maybe we can pull another 'rabbit out of the hat'," represents doctors' therapeutic optimism, (b) "To tell or not to tell?" explores doctors' decision-making around introducing palliative care, and (c) "Hospice, home or hospital?" describes HCPs concerns about challenges faced by haematology patients at end of life in terms of transfusion support and risk of catastrophic bleeds.
CONCLUSION: Haematologists value the importance of integrated palliative care but prefer the term "supportive care." Early integration of supportive care alongside active curative treatment should be the model of choice in haematology settings in order to achieve the best outcomes and improved quality of life.
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.