De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
Objectif : Montrer que les unités de soins palliatifs (USP) s’intègrent dans une prise en charge globale du patient en proposant l’accès à de nombreuses techniques non médicamenteuses.
Introduction : Les USP sont des structures spécialisées en soins palliatifs, destinées aux patients les plus complexes. Ces unités proposent l’intervention d’équipes pluridisciplinaires afin de prendre en charge de façon globale le patient. À cette fin, nous pouvons penser que les USP proposent l’accès à des techniques non médicamenteuses. À ce jour, il n’existe pas d’état des lieux de ces pratiques. Le but de notre étude est de faire un état des lieux des pratiques non médicamenteuses dans les USP en France en 2019.
Matériel et méthodes : Nous avons réalisé une analyse descriptive, non exhaustive, proposée à l’ensemble des USP de France. Nous avons analysé le nombre de techniques non médicamenteuses proposées par chaque USP, en fonction du personnel réalisant le soin (intervention d’un personnel extérieur ou membre de l’équipe soignante médicale ou paramédicale).
Résultats : La totalité des 57 USP répondantes propose l’accès à au-moins une technique non médicamenteuse. En moyenne, 8,58 techniques non médicamenteuses sont proposées par USP. Certaines techniques non médicamenteuses sont pratiquées majoritairement par des intervenants extérieurs à l’USP, d’autres techniques par le personnel médical ou paramédical de l’USP, ou sont réalisées de façon mixte.
Discussion : Toutes les USP répondantes proposent l’accès à au-moins une technique non médicamenteuse, de façon multidisciplinaire. La prise en charge des patients est globale car elle prend en compte les symptômes physiques, psychologiques, sociaux et spirituels.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
Social workers provide unique knowledge and psychosocial skills for seriously ill patients and their family. Clinicians often collaborate with social workers when caring for seriously ill patients. In fact, the Medicare Hospice Benefit and the National Consensus Project (NCP) for Quality Palliative Care state that social workers are a core member of a hospice or palliative care (PC) interdisciplinary team (IDT). This Fast Fact will discuss the role of the hospice and palliative care social worker.
Ce recueil de lettres témoigne de six années de rencontres hebdomadaires de l'auteur avec les patients de l'unité de soins palliatifs de l'hôpital de La Seyne-sur-Mer. Illustrés d'oeuvres réalisées par Michel Cadéo, ces échanges révèlent la profondeur intérieure de personnes en fin de vie prises en charge dans cet établissement.
OBJECTIVE: The aim of this project was to assess the value for money of a modified unit within a residential aged care facility (RACF) for people requiring palliative care at the end of life.
METHODS: A three-way comparison using a mixed-method costing was used to estimate the per day cost of the unit compared to care in a palliative care unit within a hospital and a standard RACF bed.
RESULTS: The cost of the unit was estimated at $242 per day (2015 Australian dollars). The palliative care hospital bed cost $1,664 per day. The cost of a standard RACF bed was $123 per day, indicating that an additional $120 per day is required to provide the higher level of care required by people with complex palliative care needs.
CONCLUSION: A modified RACF unit could provide substantial cost savings to the health budget for selected complex palliative care patients.
Objective: End-of-life cancer care imposes a heavy financial burden on patients, their families, and their health insurers. The aim of this study was to explore the 8-year (2004-2011) trends in health-care costs for Taiwanese cancer decedents in their last month of life and, specifically, to assess the association of these trends with hospice care.
Materials and Methods: We conducted a population-based longitudinal study and analyzed data from Taiwan's National Health Insurance Research Database. The data consisted of not only claims information - costs of hospitalization and outpatient department visits - but also the associated patient characteristics, catastrophic illness status, hospice patient designation, and insurance system exit date (the proxy for death).
Results: A total of 11,104 cancer decedents were enrolled, and 2144 (19.3%) of these patients received hospice care. The rate of hospice service use increased from 14.9% to 21.5% over 8 years. From 2004 to 2011, the mean health-care cost per day in the last month of life increased 8.2% (from US$93 ± $108 in 2004 to US$101 ± $110 in 2011; P = 0001). We compared three groups of patients who received hospice care for more than 1 month (long-H group), received hospice care for 30 days or less (short-H group), and did not receive hospice care (non-H group). Compared to non-H group, long-H group had a significantly lower mean health-care cost per day during their last month of life (US$85.7 ± 57.3 vs. US$102.4 ± 120) (P < 0001). Furthermore, compared to short-H and non-H groups, patients in the long-H group had lower probabilities of receiving chemotherapy and visiting the emergency department more than once. They also incurred lower health-care costs (US$77.1 ± 58.1 vs. US$92.2 ± 56.0 for short-H group and US$102.4 ± 120 for non-H group) (P < 0001).
Conclusion: Health-care costs in the last month of life are increasing over time in Taiwan. Nonetheless, health-care costs for patients receiving hospice can be as much as 16.3% lower than patients not receiving hospice care. Patients receiving hospice care for more than 30 days also had lower health-care costs than those receiving care for <30 days.
The WHO has included the spiritual dimension in its definition of palliative care since 1990, but this dimension is frequently confused with notions of religion. Yet, the spiritual suffering experienced by palliative care patients is primarily a matter of existential suffering. The objective of this study was to examine the ways in which the existential dimension was manifested in the experiences of those present in a palliative care unit. This anthropological monograph was conducted in a palliative care unit in a French University Hospital. The existential dimension appears to reside in the connections between individuals and the proximity of death appears to shed new light on the meaning of life. The mirror effect of death on life, could serve to encourage greater appreciation of the value of our connections with others, and the desire to take care of others, which offers new insight into forms of solidarity and social organisation.
CONTEXT: Hospital readmissions, frequent medication changes, and polypharmacy are common issues for hospice patients. It is important to consider if close monitoring of medications by pharmacists could help these patients avoid hospital readmissions.
OBJECTIVE: The objectives of this study were to determine the incidence and types of medication-related problems that contributed to hospital readmissions from hospice settings.
METHODS: A retrospective chart review was conducted from October 1, 2018 to January 31, 2020. Patients admitted from hospice settings (i.e. Home, ALF, LTCF) and who were seen by the palliative care teams at 9 Maryland and Washington DC MedStar hospitals were included. Demographic information was collected: age, gender, race, primary hospice diagnosis, prognosis determined by provider prior to hospice disposition, reason for readmission, and medication list at readmission. The primary outcomes were the incidence and types of medication-related problems. Secondary outcomes included patient characteristics associated with readmission, and classes/number of medications changed before readmission. Descriptive statistics were used to analyze data.
RESULTS: Seventy-five hospice patients were readmitted and seen by palliative care during the study period. Forty-three patients (57%) were found to have medication-related problems at readmission. The most common problem identified was needing additional drug therapy. Dose too low, dose too high, incorrect drugs, adverse drug reactions, and non-adherence were also identified. Additional reasons for readmission were: unanticipated new medical issue (n = 46, 61%) and uncontrolled symptoms (n = 34, 34%).
CONCLUSIONS: These findings suggest that deprescribing practices possibly contributeto readmissions from hospice settings.
CONTEXT: Improving end-of-life care (EOLC) quality among heart failure patients is imperative. Data are limited as to the hospital processes of care that facilitate this goal.
OBJECTIVES: To determine associations between hospital-level EOLC quality ratings and the EOLC delivered to heart failure patients.
METHODS: Retrospective analysis of the Veterans Health Administration (VA) and the Bereaved Family Survey data of heart failure patients from 2013-2015 who died in 107 VA hospitals. We calculated hospital-level observed-to-expected casemix-adjusted ratios of family-reported "excellent" EOLC, dividing hospitals into quintiles. Using logistic regression, we examined associations between quintiles and palliative care consultation (PCC), receipt of chaplain and bereavement services, inpatient hospice, and intensive care unit (ICU) death.
RESULTS: Of 6,256 patients, mean age was 77.4 (standard deviation=11.1), 98.3% were male, 75.7% white and 18.2% were black. Median hospital scores of "excellent" EOLC ranged from 41.3% (Interquartile range (IQR) 37.0-44.8%) in the lowest quintile to 76.4% (IQR 72.9-80.3%) in the highest. Patients who died in hospitals in the highest quintile, relative to the lowest, were slightly though not significantly more likely to receive a PCC (adjusted proportions 57.6% vs. 51.2%; p=0.32); but were more likely to receive chaplaincy (92.6% vs. 81.2%), bereavement (86.0% vs. 72.2%) and hospice (59.7% vs. 35.9%) and were less likely to die in the ICU (15.9% vs. 31.0%; p<0.05 for all).
CONCLUSION: Patients with heart failure who die in VA hospitals with higher overall EOLC quality receive more supportive EOLC. Research is needed that integrates care processes and develops scalable best-practices in EOLC across healthcare systems.
Background: Palliative care seeks to support the physical, psycho-social and spiritual needs of patients and families who are facing life threatening diseases. Advantages of establishing a palliative care unit, or alternatively co-locating patients, include promoting optimal physical and psychological symptom management; increased family satisfaction; and facilitating resource allocation.
Objective: To design a stand-alone hospital unit to provide end of life care during a pandemic.
Setting: Mount Sinai Hospital (MSH), a 1,144 bed tertiary- and quaternary-care teaching facility and Brookdale Department of Geriatrics and Palliative Medicine of the Icahn School of Medicine at Mt Sinai.
Method: Tracking key indicators signaling the need for conversion to a COVID-19 unit, and identifying factors to facilitate a successful conversion.
Result/Implementation: Using previously identified key focused action categories as framework, we describe our successful palliative care unit (PCU) conversion into a COVID-19 care unit.
Conclusion: We believe that these operational insights gained from transforming our unit during COVID-19 will be helpful to other programs and institutions during a pandemic, or public health emergencies.
Background: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear.
Aim: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting.
Design: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale.
Setting/Participants: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures.
Results: The area under the curve was optimal using a Distress Thermometer cut-off score of >=6 for total distress and for anxiety, and a cut-off score of >=4 optimal when screening for depression.
Conclusions: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of >=5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.
Background: Patients and their family have resistance in withholding parenteral nutrition (PN) when patient become unable to intake food in the end-of-life. We aimed to investigate whether the preference for PN is changed after receiving an individual education about the risk and benefit of PN. Additionally, we focused on the preferences of patients and their family and why they prefer it about the nutritional support in the end of life.
Methods: This is prospective study. Patients are eligible if they cannot tolerate oral intake and enteral feeding and have Palliative Performance Scale (PPS) =50% due to progressive cancer. After informed consent, investigators educated patients and family for an hour using the handouts. Then, patients decided if they will receive PN. Quality of life (QOL) was checked by European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL) weekly during 3 weeks. Symptoms related to fluid overloading or dehydration was surveyed weekly also. A social anthropologist participated as an observer or interviewer during whole process of this study.
Results: After education, 12 patients (80%) chose to keep receiving PN and 3 patients (20%) changed their decision from PN to minimal hydration among the 15 patients. More calories were administered to patients who chosen PN (median 1,042.2 vs. 324.3 Kcal/day, P<0.001) for initial 7 days. Overall survival, scores of QLQ-C15-PAL, and symptoms were not different with or without PN. According to the anthropologist, medical staffs regard PN as complex medical treatments, while patients and family recognize it as meal rather than medicine.
Conclusions: Most patients and family prefer to receive PN despite its potential harm and marginal benefit. An in-depth discussion about prognosis and aim of care must be preceded before a decision whether to receive PN can be made.
Background: Portable Orders for Life-Sustaining Treatment (POLST) are increasingly utilized to assist patients approaching the end of life in documenting goals of care. We evaluated the association of POLST, resource utilization, and costs to 1 year among injured older adults requiring emergency services.
Methods: This was a retrospective cohort of injured older adults =65 years with continuous Medicare fee-for-service coverage transported by emergency medical services (EMS) in 2011 across 4 counties in Oregon. Data sources included EMS, Medicare claims, vital statistics, and state POLST, inpatient and trauma registries. Outcomes included hospital admission, receipt of aggressive medical interventions, costs, and hospice use. We matched patients on patient characteristics and comorbidities to control for bias.
Results: We included 2116 patients of which 484 (22.9%) had a POLST form prior to 911 contact. Of POLST patients, 136 (28.1%) had orders for full treatment, 194 (40.1%) for limited interventions, and 154 (31.8%) for comfort measures. There were no significant associations for care during the index event. However, in the year after the index event, patients with care limitations had higher adjusted hospice use (limited interventions OR 1.7 [95% CI: 1.2–2.6]; comfort OR, 2.0 [95% CI: 1.3–3.0]) and lower adjusted post-discharge costs (no POLST, $32,399 [95% CI: 30,041–34,756]; limited interventions, $18,729 [95% CI: 12,913–24,545]; and comfort $15,593 [95% CI: 12,091–19,095]). There were no significant associations for all other outcomes.
Conclusions: Care limitations specified in POLST forms among injured older adults transported by EMS are associated with increased use of hospice and decreased costs to 1 year.
BACKGROUND AND OBJECTIVE: Integration of specialist palliative care into routine oncologic care improves patients' quality of life and survival. NCCN cancer treatment guidelines are instrumental in standardizing cancer care; yet, it is unclear how palliative and hospice care are integrated in these guidelines. In this study, we examined the frequency of occurrence of "palliative care" and "hospice care" in NCCN guidelines and compared between solid tumor and hematologic malignancy guidelines.
MATERIALS AND METHODS: We reviewed all 53 updated NCCN Guidelines for Treatment of Cancer. We documented the frequency of occurrence of "palliative care" and "hospice care", the definitions for these terms if available, and the recommended timing for these services.
RESULTS: We identified a total of 37 solid tumor and 16 hematologic malignancy guidelines. Palliative care was mentioned in 30 (57%) guidelines (24 solid tumor, 6 hematologic). "Palliative care" was mentioned more frequently in solid tumor than hematologic guidelines (median 2 vs. 0, P=0.04). Among the guidelines that included palliative care in the treatment recommendation, 25 (83%) only referred to NCCN palliative care guideline. Specialist palliative care referral was specifically mentioned in 5/30 (17%) guidelines. Only 14/24 (58%) solid tumor guidelines and 2/6 (33%) hematologic guidelines recommended palliative care in the front line setting for advanced malignancy. Few guidelines (N=3/53, 6%) mentioned hospice care.
CONCLUSION: "Palliative care" was absent in almost half of NCCN cancer treatment guidelines and was rarely discussed in guidelines for hematologic malignancies. Our findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.
IMPLICATIONS FOR PRACTICE: Integration of specialist palliative care into routine oncologic care is associated with improved patient outcomes. NCCN Clinical Practice Guidelines in Oncology have an important role to standardize palliative care involvement for cancer patients. It is unclear how often palliative care referral is recommended in these guidelines. In this study involving 53 NCCN Guidelines for Treatment of Cancer, the researchers found that palliative care was not mentioned in over 40% of NCCN guidelines and was rarely discussed in guidelines for hematologic malignancies. These findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.
OBJECTIVE: The aims of the study were to examine patients' experiences of end-of-life (EOL) discussions and to shed light on patients' perceptions of the transition from curative to palliative care.
METHODS: This study was based on a qualitative methodology; we conducted semi-structured interviews with advanced cancer patients admitted to the palliative care unit (PCU) of the Medical University of Vienna. Interviews were recorded digitally and transcribed verbatim. Data were analyzed based on thematic analysis, using the MAXQDA software.
RESULTS: Twelve interviews were conducted with patients living with terminal cancer who were no longer under curative treatment. The findings revealed three themes: (1) that the medical EOL conversation contributed to the transition process from curative to palliative care, (2) that patients' information preferences were ambivalent and modulated by defense mechanisms, and (3) that the realization and integration of medical EOL conversations into the individual's personal frame of reference is a process that needs effort and information from different sources coming together.
CONCLUSIONS: The results of the present study offer insight into how patients experienced their transition from curative to palliative care and into how EOL discussions are only one element within the disease trajectory. Many patients struggle with their situations. Therefore, more emphasis should be put on repeated offers to have EOL conversations and on early integration of aspects of palliative care into the overall treatment.
Background: There is controversy regarding the practical implementation of symptom-focused oncological cancer therapies to hospice residents. In this study, we aim to analyse the use and indication of supportive-oncological cancer therapies in hospices.
Methods: We conducted a retrospective survey of all residents of two hospice centres in the government district of Lower Bavaria, Germany. Hospice 1 (H1) was a member of an oncological–palliative medical network, and hospice 2 (H2) was independently organized. The evaluation period was the first 40 months after the opening of the respective hospice care centre. Demographical and epidemiological data as well as indications and type of supportive-oncological cancer therapies were recorded. A descriptive analysis and statistical tests were performed.
Results: Of the 706 residents, 645 had an underlying malignant disease. The average age was 72 years and the mean residence time was 28 days. The most frequent cancer types were gastrointestinal cancers, gynaecological cancers and bronchial carcinomas. Overall 39 residents (33 in H1 and 6 in H2, p < 0.01) received symptom-focused oncological cancer therapy. The average age of these residents was 68 years, and the mean residence time was 55 days. The most common therapeutic indications were dyspnoea and pain. The most common symptom-focused oncological cancer therapies were bisphosphonates, transfusions (erythrocyte- and platelet- concentrates), radiotherapy and anti-proliferative drugs (chemotherapy, anti-hormonal- and targeted- therapies). Patients with therapy lived significantly longer than patients without therapy (p < 0.01).
Conclusions: Symptom-focused oncological cancer therapies can be implemented in hospices; however, their implementation seems to require certain structural and organizational prerequisites as well as careful patient selection. As a palliative medical approach, the focus is to ameliorate the symptoms and not prolong life. Symptom-focused oncology treatment could be a further and important part for the therapy of hospice patients in the future.
Hospice agencies serve an expanding population of patients with varying disease conditions and sociodemographic characteristics. Patients with heart failure represent a growing share of hospice deaths in the United States. However, limited research has explored the perspectives of hospice interdisciplinary team members regarding how patients with heart failure and their families navigate hospice care. We sought to address this research gap by conducting qualitative interviews with hospice interdisciplinary team members at a large, not-for-profit hospice agency in New York City (N = 32). Five overarching themes from these interviews were identified regarding components that members of the hospice interdisciplinary team perceived as helping patients with heart failure and their families navigate hospice care. These themes included (1) “looking out: caregiving support in hospice care,” (2) “what it really means: patient knowledge and understanding of hospice,” (3) “on board: acceptance of death and alignment with hospice goals,” (4) “on the same page: communication with the hospice team,” and (5) “like a good student: symptom management and risk reduction practices.” Interdisciplinary team members delineated several components that influence how patients with heart failure and their families navigate hospice services and communicate with care providers. Hospice agencies should consider policies for augmenting services among patients with heart failure to improve their understanding of hospice, supplement available caregiving supports for patients without them, and remove communication barriers.
Background: Patients in palliative care are the population cohort that most frequently develop pressure injuries, severely impacting their quality of life. Data from prospective studies on the prevalence and incidence of pressure injuries in hospices are lacking.
Aim: To describe the point prevalence and cumulative incidence of pressure injuries in patients admitted to residential hospices, and to analyze their predictive factors over time.
Design: Multicentre prospective longitudinal observational study.
Setting/participants: Adult patients (n = 992) enrolled in 13 Italian residential hospices, with a minimum sample of 280 for each macro-region (North, center, South/Islands).
Methods: Assessments including the Karnofsky Performance Status, Braden, Edmonton Symptom Assessment System Revised scales and pressure injury staging according to National Pressure Ulcer Advisory Panel were conducted at least every four days, from admission to patients’ death/discharge.
Results: The 7,967 observations recorded provided prevalence and incidence rates of 34.1% and 26.5%, respectively. The logistic regression model showed non-cancer disease (OR = 2.39, 95%CI = 1.65–3.47), age >80 (OR = 2.01, 95%CI = 1.49–2.71), Braden score ‘at risk’ (OR = 1.92, 95%CI = 1.17–3.14), urinary catheter (OR = 1.96, 95%CI = 1.40–2.75), drowsiness (OR = 1.41, 95%CI = 1.02–1.95) and artificial nutrition (OR = 1.47, 95%CI = 1.01–2.14) as the variables associated with pressure injury at admission. The generalized estimating equations models, built on the timeframes for observation groups, revealed male gender (OR = 1.68, 95%CI = 1.01–2.79) and Braden score ‘at risk’ (OR = 4.45, 95%CI = 1.74–11.34) as predictive factors of a new pressure injury developed up to three weeks before a patient's death, while in the last ten days of life these predictors were replaced by diagnosis of cancer (OR = 1.80, 95%CI = 1.11–2.91), worsening pain (OR = 1.65, 95%CI = 1.10–2.49), drowsiness (OR = 1.79, 95%CI = 1.25–2.57) and dyspnea (OR = 1.48, 95%CI = 1.01–2.18).
Conclusions: The high incidence and prevalence of pressure injuries confirm the importance of palliative care nurses continuously focusing on prevention and management strategies. In the last three weeks of a patient's life, the predictive power of the Braden scale for a new pressure injury is not confirmed, throwing doubt on the effectiveness of aimed interventions at modifying risk factors. Along the different disease trajectories, pressure injuries developed during the instability/worsening phases of illness, occurring before hospice admission for non-cancer patients and in the end-of-life phase for cancer patients. Despite continuous provision of appropriate interventions, most of the new pressure injuries were detected during the last ten days of a patient's’ life and assessed as 'unavoidable'. These results are crucial to guiding palliative care nursing plans during the different phases of illness, and to predicting care needs, possible management strategies (‘wound management’ vs. ‘wound palliation’), and resource utilization.
BACKGROUND: The marketing authorisation for many injectable drugs used in palliative care does not cover the frequently preferred subcutaneous route. Consequently, subcutaneous off-label drug administration is often practised.
AIM: To assess the use, safety and tolerability of subcutaneous label and subcutaneous off-label drug administration in a Danish hospice.
MATERIAL AND METHODS: Retrospective data from hospice inpatient records registered with subcutaneous drug administration. Prospective data of subcutaneous drug administration registered to hospice inpatients over a period of 2 months.
RESULTS: Drugs were administered subcutaneously to 90% of patients in both studied cohorts. Thirty different drugs were administered subcutaneously. Ten (33%) drugs were authorised for subcutaneous administration, 14 (47%) for intramuscular and 6 (20%) for intravenous administration only. A search in major palliative literature and scientific publications revealed that 11 of the 20 subcutaneous off-labelled drugs were administered with little to no support from these sources. In seven patients, 11 adverse drug reactions (ADRs) were registered. ADRs were all minor local reactions and led to drug discontinuation in two patients only.
CONCLUSION: Subcutaneous drug administration was frequently used in the hospice. Two-thirds of the drugs were administered subcutaneously off-label. The findings of only a few and minor ADRs indicate that the drugs identified in this study, although often subcutaneously off-label and with little support from palliative literature, were administered with acceptable safety and tolerability. Off-label treatment practised in the clinic should be identified, reported and serve as inspiration for future scientific research and incentives for extension of marketing authorisations.