OBJECTIVES: Music therapy has been shown to be effective for reducing anxiety and pain in people with a serious illness. Few studies have investigated the feasibility of integrating music therapy into general inpatient care of the seriously ill, including the care of diverse, multiethnic patients. This leaves a deficit in knowledge for intervention planning. This study investigated the feasibility and effectiveness of introducing music therapy for patients on 4 inpatient units in a large urban medical center. Capacitated and incapacitated patients on palliative care, transplantation, medical intensive care, and general medicine units received a single bedside session led by a music therapist.
METHODS: A mixed-methods, pre-post design was used to assess clinical indicators and the acceptability and feasibility of the intervention. Multiple regression modeling was used to evaluate the effect of music therapy on anxiety, pain, pulse, and respiratory rate. Process evaluation data and qualitative analysis of observational data recorded by the music therapists were used to assess the feasibility of providing music therapy on the units and patients' interest, receptivity, and satisfaction.
RESULTS: Music therapy was delivered to 150 patients over a 6-month period. Controlling for gender, age, and session length, regression modeling showed that patients reported reduced anxiety post-session. Music therapy was found to be an accessible and adaptable intervention, with patients expressing high interest, receptivity, and satisfaction.
SIGNIFICANCE OF RESULTS: This study found it feasible and effective to introduce bedside music therapy for seriously ill patients in a large urban medical center. Lessons learned and recommendations for future investigation are discussed.
BACKGROUND: Hospitals are important sites of end-of-life care, particularly for older people. A need has been identified to understand best practice in hospital end-of-life care from the service-user perspective.
AIM: The aim of this study was to identify examples of good care received in the hospital setting during the last 3 months of life for people dying in advanced age from the perspective of bereaved family members.
DESIGN: A social constructionist framework underpinned a qualitative research design. Data were analysed thematically drawing on an appreciative enquiry framework.
SETTING/PARTICIPANTS: Interviews were conducted with 58 bereaved family carers nominated by 52 people aged >80 years participating in a longitudinal study of ageing. Data were analysed for the 21 of 34 cases where family members were 'extremely' or 'very' satisfied with a public hospital admission their older relative experienced in their last 3 months of life.
RESULTS: Participants' accounts of good care aligned with Dewar and Nolan's relation-centred compassionate care model: (1) a relationship based on empathy; (2) effective interactions between patients/families and staff; (3) contextualised knowledge of the patient/family; and (4) patients/families being active participants in care. We extended the model to the bicultural context of Aotearoa, New Zealand.
CONCLUSION: We identify concrete actions that clinicians working in acute hospitals can integrate into their practice to deliver end-of-life care with which families are highly satisfied. Further research is required to support the implementation of the relation-centred compassionate care model within hospitals, with suitable adaptations for local context, and explore the subsequent impact on patients, families and staff.
OBJECTIVE: Qualitatively evaluate the operation of a palliative care service in oncology.
METHODOLOGY: Qualitative study conducted in a service in southern Brazil based on a fourth generation evaluation. Between September 2014 and June 2015, 460 hours of operation were observed, and 45 semi-structured interviews and five negotiation meetings were conducted; data were analyzed using the constant comparative method.
RESULTS: Potential services are: provision of outpatient palliative care, home and inpatient care provided by a multidisciplinary and support team, meeting the patient's biological, psychological, social and spiritual needs. Study limitations: ineffective communication between clinical and surgical oncology and palliative care sectors, lack of specialized training for professionals and in interpersonal relationship issues among team members.
FINAL CONSIDERATION: For palliative care progress in the service, some arrangements are required to enhance integrality of care.
OBJECTIVE: Clinicians frequently overestimate survival time among seriously ill patients, and this can result in medical treatment at end of life that does not reflect the patient's preferences. Little is known, however, about the sources of clinicians' optimistic bias in survival estimation. Related work in social networks and experimental psychology demonstrates that psychological states-such as optimism-can transfer from one person to another.
METHODS: We directly observed and audio recorded 189 initial inpatient palliative care consultations among hospitalized patients with advanced cancer. Patients self-reported their level of trait optimism and expectations for survival prognosis prior to the palliative care consultation, and the palliative care clinicians rated their expectations for the patient's survival time following the initial conversation with the patient. We followed patient mortality for 6 months.
RESULTS: Patient optimism was associated with clinician overestimation of their survival in a dose-response relationship. Clinicians were approximately three times as likely to overestimate the survival of patients endorsing both high trait optimism and optimistic ratings of their survival time compared with neither (OR: 2.95; 95% CI: 1.24-7.02). This association was not attenuated by adjustment for age, gender, race, ethnicity, education, income, cancer type, functional status, quality of life, or white blood cell count (ORadj : 3.45; 95% CI: 1.24-9.66).
CONCLUSION: Patients' optimism may have some influence over their clinicians' prognostic judgments.
BACKGROUND: High rates of health care utilization at the end of life may be a marker of care that does not align with patient-stated preferences. We sought to describe trends in end-of-life care and factors associated with dying in hospital.
METHODS: We conducted a population-level retrospective cohort study of adult decedents in Ontario between Apr. 1, 2004, and Mar. 31, 2015, using linked administrative data sets, including the Office of the Registrar General for Deaths database, the hospital Discharge Abstract Database, the National Ambulatory Care Reporting System and physicians' billing claims (Ontario Health Insurance Plan). The primary outcome was place of death. To determine health care utilization and health care costs during the 6 months before death, we also identified admissions to hospital and to the intensive care unit, emergency department visits, and receipt of mechanical ventilation and palliative care.
RESULTS: In the last 6 months of life, 77.3% of 962 462 decedents presented to an emergency department, 68.4% were admitted to hospital, 19.4% were admitted to an intensive care unit, and 13.9% received mechanical ventilation. Forty-five percent of all deaths occurred in hospital, a proportion that declined marginally over time, whereas receipt of palliative care increased during terminal hospital admissions (from 14.0% in fiscal year 2004/05 to 29.3% in 2014/15, p < 0.001) and in the last 6 months of life (from 28.1% in 2004/05 to 57.7% in 2014/15, p < 0.001). The proportion of decedents who presented to the emergency department, were admitted to hospital or were admitted to the intensive care unit in the last 6 months of life did not change over 11 years. The mean total health care costs in the last 6 months of life were highest among those dying in hospital, with most costs attributable to inpatient medical care.
INTERPRETATION: Health care utilization in the last 6 months of life was substantial and did not decrease over time. It is possible that increased capacity for palliative, hospice and home care at the end of life may help to better align health system resources with the preferences of most patients, a topic that should be explored in future studies.
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. Nurses are inadequately prepared to provide end-of-life (EOL) care because of cure-focused education. Friends and family of dying patients report poor quality of death largely as a result of inadequate communication from health care professionals about the dying process. The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. These acronym organized tools were developed based upon the common symptom management needs of the dying including Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. The CARES tool for nurses improved nursing knowledge and comfort related to EOL care and common symptom management needs of the dying and also enhanced nurses' confidence in communicating about the dying process with friends and family. Final Journey, the friends and family version of the CARES tool, reinforced EOL information for friends and family, helped nurses answer difficult questions, and promoted and enhanced communication between health care professionals and friends and family of the dying.
BACKGROUND AND OBJECTIVES: The development of advance care plans (Plans) in general practice can be time consuming. End-of-life care should reflect an individual’s documented preferences. The aim of this study was to examine the content and implementation of Plans in hospital during end-of-life care.
METHODS: A retrospective cohort study of the hospital medical records of decedents aged =75 years was performed to assess Plan content and implementation.
RESULTS: Of the 536 decedents, 52 had a Plan. There were 17 cases where life-prolonging treatment was given and contradicted preferences listed in the Plan. This included instances of intubation, surgery and curative medication.
DISCUSSION: General practice staff investment in advance care planning should be reflected in the utilisation of Plans and, where medically indicated, respect for patients’ preferences.
Background: Medical discipline in India focuses on cure rather than comfort care. Palliative care is concerned with improving quality of life and relieving sufferings in patients with advanced incurable terminal diseases. Palliative care in India is still in infancy stage due to lack of knowledge, attitude and skills among health care providers. The reason being lack of training in under graduate as well as postgraduate teaching curriculum and lack of sensitization among policy makers.
Aims and Objectives: To assess the awareness, interest, practices and knowledge in palliative care among medical professionals working in a tertiary care hospital.
Materials and Methods: All participants were mailed proforma to be filled in a fixed format including details of their qualification, demographic data, their field of work, their training in palliative care and multiple choice questions regarding awareness interest, practices and knowledge of palliative care.
Results: Out of 186 respondents, 56% had not received any basic training in palliative care. 81% wanted palliative care education to be included in undergraduate curriculum. Poor program was identified as the most common barrier in learning palliative care. 77% respondents had no idea about home based palliative care services. 50.8% patients dies in hospital in their terminal stage. 88% were interested in learning safe opioid practices. Although 89.8% were aware of the need of palliative care in metastatic cancer but less than 50% were aware of the fact that palliative care is also required in MDR-TB and mental illness.
Conclusion: This study reflects data of an apex cancer institute of the country. The result of awareness is not very encouraging despite a dedicated palliative care department. So, we can assume what will be the palliative care status in other parts of India where there is no palliative care at all.
Recommendation: We strongly recommends that palliative care teaching should be incorporated in undergraduate curriculum to sensitize the students from the beginning. Budding residents in their learning phase can play an important role by learning and providing palliative care as the first person to come into contact with the patients are residents. There is a strong need of spreading palliative care awareness all over the country.
Context: Organization and delivery of palliative care (PC) services vary from one country to another. In Nigeria, PC has continued to develop, yet the organization and scope of PC is not widely known by most clinicians and the public.
Objectives: The aim of the study is to identify PC services available in a Nigerian Hospital and how they are organized.
Methods: This ethnographic study, utilized documentary analysis, participant observation, and ethnographic interviews (causal chat during observation and individual interviews) to gather data from members of PC team comprising doctors (n = 10), nurses (n = 4), medical social workers (n = 2), a physiotherapist, and a pharmacist, as well nurses from the oncology department (n = 3). Data were analyzed using Spradley's framework for ethnographic data analysis.
Results: PC was found to be largely adult patient-centered. A hospital-based care delivery model, in the forms of family meetings, in- and out-patients' consultation services, and a home-based delivery model which is primarily home visits conducted once in a week, were the two models of care available in the studied hospital. The members of the PC team operated two shift patterns from 7:00 am to 2.00 pm and a late shift from 2:00 pm to 7:00 pm instead of 24 h service provision.
Conclusions: Although PC in this hospital has made significant developmental progress, the organization and scope of services are suggestive of the need for more development, especially in manpower and collaborative care. This study provided knowledge that could be used to improve the clinical practice of PC in various cross-cultural Nigerian societies and other African context, as well as revealing areas for PC development.
OBJECTIVES: Studies have shown improved patient quality of life with supportive care rather than aggressive treatment at the end of life. This study evaluated the symptoms that patients in Thailand with gynecologic cancers experienced and the interventions that they received at the end of life.
METHODS: The medical records of patients admitted to a tertiary cancer center in Thailand who died in the hospital from gynecologic malignancies between January 1, 2011 and December 31, 2016 were reviewed. Inclusion criteria were patients who had been been diagnosed with gynecologic cancers (ovarian, endometrial, cervical, vulvar, or peritoneal cancers or uterine sarcomas) and had died in the hospital during that period. Patients whose medical records were incomplete or unavailable were excluded from the study. Data on demographics, symptoms, interventions, and end-of-life care were collected.
RESULTS: A total of 159 patients were included in this analysis. The mean age at death was 54.3 (range 15-91) years. Over half (54.7%) of the patients were diagnosed with ovarian or peritoneal cancer, 26.4% with uterine cancer or sarcoma, 16.4% with cervical cancer, and 1.3% with dual primary cancers. Symptoms at time of admission were poor oral intake (68.6%), abdominal distention or discomfort (63.5%), pain (42.8%), nausea or vomiting (35.2%), and fever or signs of infection (27.0%). The mean number of hospitalizations during the last 6 months was 3.6. Thirty-six patients (22.6%) had major surgery during the last 6 months of life, with 14 patients (8.8%) having it performed during their last admission before death. The mean length of the last hospital stay was 22.3 (range 6-31) days, and 61 patients (38.4%) were admitted to the intensive care unit. Eleven patients (6.9%) had chemotherapy in their last 14 days of life and 10 (6.3%) received cardiopulmonary resuscitation. Almost all patients (153, 96.2%) had do-not-resuscitate (DNR) consents. The mean time between the DNR consent and death was 6.3±9.7 days.
CONCLUSION: Multiple hospital admissions, aggressive treatments, and invasive procedures were common among patients with gynecologic cancer at the end of life. Better symptom management, end-of-life preparation, and communication are needed to enhance patients' quality of life in Thailand.
Background: Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.
Methods: Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients’ place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients’ socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).
Results: We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose–response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49–0.80; Model 2: APR range 0.79–0.98) and urban areas (Model 1: APR range 0.50–0.83; Model 2: APR range 0.98–0.99) were less likely to die there, compared to those who lived closer (i.e. = 10 min drive time). The effects were larger in rural areas compared to urban areas.
Conclusion: Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.
OBJECTIVE: Hospital use increases in the last 3 months of life. We aimed to examine its association with where people live and its variation across a large health jurisdiction.
METHODS: We studied a number of emergency department presentations and days spent in hospital, and in-hospital deaths among decedents who were hospitalized within 30 days of death across 153 areas in New South Wales (NSW), Australia, during 2010-2015.
RESULTS: Decedents' demographics and health status were associated with hospital use. Primary care and aged care supply had no or minimal influence, as opposed to the varying effects of areal factors-socioeconomic status, remoteness, and distance to hospital last admitted. Overall, there was an approximate 20% difference in hospital use by decedents across areas. In all, 18% to 57% of areas had hospital use that differed from the average.
DISCUSSION: The observed disparity can inform targeted local efforts to strengthen the use of community care services and reduce the burden of end-of-life care on hospitals.
CONTEXT: Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood.
OBJECTIVE: To explore decision-making by patients and clinicians during inpatient goals-of-care discussions.
METHODS: A qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts.
RESULTS: Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n=30) were female and their mean age was 60.1 years (SD=12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. In contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions.
CONCLUSION: Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty.
CONTEXT: Palliative care in oncology provides multiple benefits, however access to specialty palliative clinicians is limited in community cancer centers. Individual support services are more often available, but little is known on the utilization and impact of these services.
OBJECTIVES: To describe the utilization of outpatient support services in the advanced cancer population and the association with ED and hospital use in a community setting.
METHODS: A retrospective chart review of 314 patients with advanced cancer of lung, gastrointestinal, genitourinary, and gynecologic origin was conducted. Data collected included demographics, descriptive data, type and number of support services (symptom management, nurse navigator, social worker, nutrition, financial counselor, chaplain, and oncology clinical counselor) within 90 days of diagnosis and descriptions of ED visits/hospitalizations within 12 months of diagnosis. Support services were available to patients by referral.
RESULTS: 29.6% of patients were deceased within 6 months and were considered to have severe disease. Patients with severe disease had a significantly greater mean number of support services than patients with non-severe disease (8.9 vs 6.0, p=0.001) and had a greater mean number of visits per year to the ED (6.4 vs 1.8, p<0.001). A greater proportion of patients with severe disease had palliative consultations (48.9% vs 21.7%, p<0.001), but 65.5% of palliative consultations occurred after an ED or hospital visit.
CONCLUSION: Our data demonstrated that advanced cancer patients with severe disease had increased healthcare utilization in all areas measured. Despite high utilization, outpatient support services used in a reactive manner were not effective in reducing ED or hospital visits.
L’article est une approche anthropologique de la mort à l’hôpital. L’analyse s’appuie sur la littérature produite sur ce sujet, sur les enquêtes menées par les deux auteures, en France et ailleurs (Madagascar et Maroc) et sur la consultation de médecine transculturelle qu’elles animent au CHU de Bordeaux. La mort et son sens y sont examinés à travers l’histoire en Occident et par des exemples de médicalisation dans d’autres contextes. Les rituels funéraires s’avèrent indispensables dans certaines cultures pour le devenir du mort et la paix des vivants. En Occident, les rituels se sont amenuisés, et la médicalisation, l’individualisme, la marginalisation des croyances religieuses, font que le sens de la mort s’est modifié. La culture de fin de vie qui est mise en œuvre dans les hôpitaux est pensée pour que la personne puisse donner un sens à sa vie et non pour la préparer à un au-delà. Des exemples sont pris dans différents services du CHU de Bordeaux. Les équipes inventent collectivement des gestes, des accompagnements par les paroles, pour que la fin de vie soit la plus apaisée. En effet, le risque le plus grave à l’hôpital est de mourir seul, condition infâme et violente que redoutent tous, patients, familles et soignants.
OBJECTIVES: To describe the rate of do-not-resuscitate (DNR) and do-not-hospitalize (DNH) orders among residents newly admitted into long-term care homes. We also assessed the association between DNR and DNH orders with hospital admissions, deaths in hospital, and survival.
DESIGN: A retrospective cohort study.
SETTING AND PARTICIPANTS: Admissions in all 640 publicly funded long-term care homes in Ontario, Canada, between January 1, 2010 and March 1, 2012 (n = 49,390).
MEASURES: We examined if a DNR and/or DNH was recorded on resident's admission assessment. All residents were followed until death, discharge, or end of study to ascertain rates of several outcomes, including death and hospitalization, controlling for resident characteristics.
RESULTS: Upon admission, 60.7% of residents were recorded to have a DNR and 14.8% a DNH order. Those who were older, female, widowed, lived in rural facilities, lived in higher income neighborhoods prior to entry, had higher health instability or cognitive impairment, and spoke English or French were more likely to receive a DNR or DNH. Survival time was only slightly shorter for those with a DNR and DNH with a mean of 145 and 133 days, respectively, vs 160 and 153 days for those without a DNR and DNH. After controlling for age, sex, rurality, neighborhood income, marital status, health instability, cognitive performance score, and multimorbidity, DNR and DNH were associated with an odds ratio of 0.57 [95% confidence interval (CI) 0.53-0.62] and 0.41 (95% CI 0.37-0.46) for dying in hospital, respectively. Those with a DNR and DNH, after adjustment, had an incidence rate ratio of 0.87 (95% CI 0.83-0.90) and 0.70 (95% CI 0.67-0.73), respectively, days spent in hospital.
CONCLUSIONS AND IMPLICATIONS: This study outlines identifiable factors influencing whether residents have a DNR and/or DNH order upon admission. Both orders led to lower rates, but not absolute avoidance, of hospitalizations near and at death.
CONTEXT: Providing nonbeneficial care at the end of life and delays in initiating comfort care have been associated with provider and nurse moral distress.
OBJECTIVE: Evaluate provider and nurse moral distress when using a comfort care order set and attitudes about timing of initiating comfort care for hospitalized patients.
METHODS: Cross-sectional survey of providers (physicians, nurse practitioners, and physician assistants) and nurses at 2 large academic hospitals in 2015. Providers and nurses were surveyed about their experiences providing comfort care in an inpatient setting.
RESULTS: Two hundred five nurse and 124 provider surveys were analyzed. A greater proportion of nurses compared to providers reported experiencing moral distress "some, most, or all of the time" when using the comfort care order set (40.5% and 19.4%, respectively, P = .002). Over 60% of nurses and providers reported comfort care was generally started too late in a patient's course, with physician trainees (81.4%), as well as providers (80.9%) and nurses (84.0%) < 5 years from graduating professional school most likely to report that comfort care is generally started too late.
CONCLUSIONS: The majority of providers and nurses reported that comfort care was started too late in a patient's course. Nurses experienced higher levels of moral distress than providers when caring for patients using a comfort care order set. Further research is needed to determine what is driving this moral distress in order to tailor interventions for nurses and providers.
BACKGROUND: Patients with terminal conditions are often admitted to the emergency department (ED) for acute medical services, but studies have suggested that multiple ED admissions may negatively impact end-of-life (EOL) care. Research have shown that incorporating palliative care (PC) is integral to optimal EOL care, but it is an aspect of medical practice that is often neglected. The current study sought to provide an overview of health outcomes and hospital costs of patients with cancer admitted to The Ottawa Hospital and/or received acute medical services during their final 2 weeks of life. Cost comparisons and estimates were made between hospital and hospice expenditures.
METHODS: We conducted a retrospective chart review of palliative patients who died at The Ottawa Hospital in 2012. A total of 130 patients who visited the ED within 2 weeks of death were included in the analyses.
RESULTS: In this cohort of patients, 71% of admitted patients did not have advanced care directives and 85% experienced a metastasis, but only 18% had a PC medical doctor. Patients were hospitalized, on average, for 7 days and hospitalization costs exceeded the estimated hospice cost by approximately 2.5 times (Can$1 041 170.00 at Can$8009.00/patient vs Can$401 570.00 at Can$3089.00/patient, respectively).
CONCLUSION: Our study highlighted the importance of PC integration in high-risk patients, such as those in oncology. Patients in our sample had minimal PC involvement, low advanced care directives, and accrued high costs. Based on our analyses, we concluded that these patients would have likely benefited more from hospice care rather than hospitalization.
BACKGROUND: Person-centred palliative care poses high demands on professionals and patients regarding appropriate and effective communication and informed decision-making. This is even more so for patients with limited health literacy, as they lack the necessary skills to find, understand and apply information about their health and healthcare. Recognizing patients with limited health literacy and adapting the communication, information provision and decision-making process to their skills and needs is essential to achieve desired person-centred palliative care. The aim of this study is to summarize available strategies and tools for healthcare providers towards successful communication, information provision and/or shared decision-making in supporting patients with limited health literacy in hospital-based palliative care in Western countries.
METHODS: A scoping review was conducted. First, databases PubMed, Embase, CINAHL, and PsycINFO were searched. Next, grey literature was examined using several online databases and by contacting national experts. In addition, all references of included studies were checked.
RESULTS: Five studies were included that showed that there are face-to-face, written as well as online strategies available for healthcare providers to support communication, information provision and, to a lesser extent, (shared) decision-making in palliative care for patients with limited health literacy. Strategies that were mentioned several times were: teach-back method, jargon-free communication and developing and testing materials with patients with limited health literacy, among others. Two supporting tools were found: patient decision aids and question prompt lists.
CONCLUSIONS: To guarantee high quality person-centred palliative care, the role of health literacy should be considered. Although there are several strategies available for healthcare providers to facilitate such communication, only few tools are offered. Moreover, the strategies and tools appear not specific for the setting of palliative care, but seem helpful for providers to support the communication, information provision and decision making with patients with limited health literacy in general. Future research should focus on which strategies or tools are (most) effective in supporting patients with limited health literacy in palliative care, and the implementation of these strategies and tools in practice.