BACKGROUND: The anaesthetic propofol is often mentioned as a drug that can be used in palliative sedation. The existing literature of how to use propofol in palliative sedation is scarce, with lack of information about how propofol could be initiated for palliative sedation, doses and treatment outcomes.
AIM: To describe the patient population, previous and concomitant medication and clinical outcome when propofol was used for palliative sedation.
METHODS: A retrospective study with quantitative and qualitative data. All patients who during a four-and-a-half-year period received propofol for palliative sedation at the Department of palliative medicine, Akershus University Hospital, Norway were included.
RESULTS: Fourteen patients were included. In six patients the main indication for palliative sedation was pain, in seven dyspnoea and in one delirium. In eight of these cases propofol was chosen because of the pharmacokinetic properties (rapid effect), and in the remaining cases because midazolam in spite of dose titration failed to provide sufficient symptom relief. In all patients sedation and adequate symptom control was achieved during manual dose titration. During the maintenance phase three of fourteen patients had spontaneous awakenings. At death propofol doses ranged from 60 to 340 mg/hour.
CONCLUSIONS: Severe suffering at the end of life can be successfully treated with propofol for palliative sedation. This can be performed in palliative medicine wards, but skilled observation and dose titration throughout the period of palliative sedation is necessary. Successful initial sedation does not guarantee uninterrupted sedation until death.
BACKGROUND: General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, and falling GP numbers. A 'public health palliative care' approach, defined as "working with communities to improve people's experience of death, dying and bereavement", is gaining momentum. 'Compassionate communities' is one example, with a focus on linking professional health carers with supportive community networks. Primary care is central to the approach, which has been incorporated into United Kingdom GP palliative care guidance. No research to date, however, has investigated GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of a public health approach to palliative care, and compassionate communities.
METHODS: GPs working in the United Kingdom were recruited through university teaching and research networks using snowball sampling. Purposive sampling ensured wide representation of gender, level of experience and practice populations. Semi-structured, digitally audio-recorded interviews were conducted with nine GPs. Interviews were transcribed verbatim, and thematic analysis was undertaken, informed by a qualitative descriptive methodology. Interviews continued until data saturation was reached.
RESULTS: Most participants were unfamiliar with the term 'compassionate communities', but recognised examples within their practice. Three major themes with seven subthemes were identified: 1) Perceived potential of compassionate communities, including: 'maximising use of existing community services'; 'influencing health outside of healthcare'; and 'combatting taboo', 2) Perceived challenges of compassionate communities, including: 'patient safety'; 'limited capacity of the community'; 'limited capacity of general practice', and 'applicability of public health to palliative care', and 3) The role of the GP in compassionate communities.
CONCLUSIONS: GPs recognised the importance of the wider community in caring for palliative care patients, however most were unfamiliar with the compassionate community approach. Participants held differing views regarding the application of the model, and the position of general practice within this. Further research into the approach's practical implementation, and exploring the views of other key stakeholders, would help establish the feasibility of compassionate communities in practice, and guide its future application.
BACKGROUND: Worldwide, pharmacy practice is changing to include new roles and responsibilities. Laws enabling the implementation of assisted dying are expanding in international jurisdictions. Pharmacy practice in assisted dying is subsequently expanding. However, studies of how pharmacists experience their practice when engaged in assisted dying are absent. To progress research into the lived experiences of pharmacists practicing in assisted dying, the development of an inquiry framework to guide such research is the first step.
OBJECTIVE: The objective was to develop a theoretical framework of inquiry for use in subsequent continuing research which may explore the actual experience of pharmacy practice in assisted dying.
METHODS: Perspectives were gathered from expert and senior pharmacists who were anticipating the imminent implementation of assisted dying practice. Analysis focused on understanding what aspects of practice experience were important to them. Interview-conversations centred on the question: If you had the chance to talk to experienced pharmacist practitioners who have been involved in the practice of assisted dying, what aspects regarding their experiences, would you like to know about? A conventional approach to qualitative content analysis was utilized to analyze the data.
RESULTS: Findings summarized questions posed by pharmacists contemplating the implementation of assisted dying practice. These perspectives formed the foundation of a theoretical inquiry framework constituted by 8 inter-related dimensional range-continuums. Each range-continuum, designed to explore the lived experiences of pharmacists in practice, is defined. Examples of how the inquiry dimensions will be used to inform future exploratory research are offered within the framework.
CONCLUSIONS: The theoretical inquiry framework will be used to develop knowledge for pharmacists contemplating participation (or not) in assisted dying practice. It is timely to progress research that reveals the informed experiences of pharmacists that are actually practicing in this area. The framework may be adapted for researching pharmacists' experience in other practice areas and contexts.
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions.
DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed.
SETTING: The Netherlands.
PARTICIPANTS: 64 parents of 44 children.
RESULTS: Parents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person.
CONCLUSIONS: The barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.
BACKGROUND: The 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs.
METHODS: Using the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program.
RESULTS: Beyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose.
CONCLUSIONS: The successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other.
OBJECTIVE: Communication and patient-centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour "starting a conversation about palliative care with a professional carer" from the perspective of people with incurable cancer.
METHODS: A qualitative study using semi-structured face-to-face interviews with 25 people with incurable cancer: 13 not (yet) receiving palliative care and 12 receiving palliative care; 4 started the conversation themselves. Determinants related to the defined behaviour were matched with concepts in existing behavioural theories.
RESULTS: Both positive and negative stances towards starting a conversation about palliative care with a professional carer were found. Influencing behavioural factors were identified, such as knowledge (e.g. about palliative care), attitude (e.g. association of palliative care with quality of life) and social influence (e.g. relationship with the professional carer). We modelled the determinants into a behavioural model.
CONCLUSION: The behavioural model developed helps to explain why people with incurable cancer do or do not start a conversation about palliative care with their professional carer. By targeting the modifiable determinants of the model, promising interventions can be developed to help patients taken the initiative in communication about palliative care with a professional carer.
OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region.
DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis.
SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA.
PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study.
RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death.
CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.
BACKGROUND: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people.
METHODS: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases.
RESULTS: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were 'outsiders,' the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health.
CONCLUSION: These end-of-life care service models operated in a space between the healthcare system and the person's life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.
BACKGROUND: Spiritual care is frequently cited as a key component of hospice care in Taiwanese healthcare and beyond. The aim of this research is to gauge physicians and nurses' self-reported perspectives and clinical practices on the roles of their professions in addressing spiritual care in an inpatient palliative care unit in a tertiary hospital with Buddhist origins.
METHODS: We performed semi-structured interviews with physicians and nurses working in hospice care over a year on their self-reported experiences in inpatient spiritual care. We utilized a directed approach to qualitative content analysis to identify themes emerging from interviews.
RESULTS: Most participants identified as neither spiritual nor religious. Themes in defining spiritual care, spiritual distress, and spiritual care challenges included understanding patient values and beliefs, fear of the afterlife and repercussions of poor family relationships, difficulties in communication, the patient's medical state, and a perceived lack of preparedness and time to deliver spiritual care.
CONCLUSIONS: Our study suggests that Taiwanese physicians and nurses overall find spiritual care difficult to define in practice and base perceptions and practices of spiritual care largely on patient's emotional and physical needs. Spiritual care is also burdened logistically by difficulties in navigating family and cultural dynamics, such as speaking openly about death. More research on spiritual care in Taiwan is needed to define the appropriate training, practice, and associated challenges in provision of spiritual care.
BACKGROUND: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves.
METHODS: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data.
RESULTS: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants' initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients' physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients' engagement with creative activities. The final theme delineates the transformation of hospice into a second 'family' and 'home' and the restoration of an identity that expands beyond the 'sick' role.
CONCLUSIONS: Receiving hospice care that sensitively attends to patients' psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and re-configure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.
Purpose: To explore the experiences of expatriate nurses caring for Muslim patients near end-of-life in a palliative care unit in the United Arab Emirates.
Methods: A qualitative descriptive study, with data collected through semi structured individual interviews with nine expatriate nurses working in a palliative care unit in one hospital in the United Arab Emirates. Thematic analysis of the data transcripts used a structured inductive approach.
Results: Analysis of the interview transcripts yielded three themes. First, language was a significant barrier in end-of-life care but was transcended when nurses practiced authentically, using presence, empathetic touch and spiritual care. Secondly, relationships between nurses, patients and families were strengthened over time, which was not always possible due to late presentation in the palliative care unit. Finally, nurses were continually in discussions with physicians, families and other nurses, co-creating the meaning of new information and experiences within the hospital policy context.
Conclusion: For expatriate nurses, palliative nursing in a Muslim middle eastern country is complex, requiring nurses to be creative in their communication to co-create meaning in an emotionally intensive environment. Like other palliative care settings, time can strengthen relationships with patients and their families, but local cultural norms often meant that patients came to palliative care late in their disease trajectory. Preparing expatriate nurses for work in specialist palliative care settings requires skill development in advanced communication and spiritual practices, as well as principles of palliative care and tenets of Muslim culture.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Background: oral health problems among people receiving palliative care are common and can significantly affect quality of life. Nurses are at the frontline of palliative care in Australia. However, how optimal oral health care is addressed in clinical practice by palliative nurses is not known.
Aim: To explore the perceptions of nurses working in Australian palliative care settings to determine the acceptability, challenges and recommendations that need to be considered to develop and implement an oral health care model in palliative care settings.
Methods: Two focus groups were conducted with community (n = 8) and inpatient nurses (n = 10) working in urban palliative care settings.
Findings: Four main themes were developed through consensus: 1) Oral health is important in the palliative care setting; 2) Additional training could enhance what nurses already do; 3) Barriers to receiving oral care: a structural issue; 4) Exploring alternative pathways to dental services.
Discussion: Nurses recognised the importance of oral health in palliative care; however, the paucity of set protocols based on existing guidelines meant that oral care was often unstructured. Systemic factors reduced the number of available options for people receiving palliative care to access professional dental treatment. Although alternative solutions, including teledentistry services, were explored, there were some constraints.
Conclusion: A palliative care oral health model of care would need to integrate existing formal guidelines into a comprehensive framework specific for palliative care nurses and develop palliative care oral health training for them taking into consideration existing barriers for people to receive professional dental treatment.
Context: Digital health offers innovative mechanisms to engage in palliative care, yet digital systems are typically designed for individual users, rather than integrating the patient’s caregiving “social convoy” (i.e. family members, friends, neighbors, formal caregiving supports) to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the social convoy in digitally supported palliative care.
Objectives: Conduct a qualitative study examining patient, social convoy, and health care provider perspectives on digital health for palliative care to inform the design of future digital solutions for older adults with serious illness and their social convoy.
Methods: Grounded theory approach using semi-structured interviews (N=81) with interprofessional health care providers, older adults with serious illness, and their social convoy participants at home, clinic, or Zoom. Interviews were conducted using question guides relevant to the participant group and audio recorded for verbatim transcription. Two coders lead the inductive analysis using open and axial coding.
Results: Thematic results aligned with the human centered design framework, which is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The human centered design process and corresponding theme included: (1) Empathy: Patient, Caregiver, and Provider Experience reports participants’ experience with managing serious illness, caregiving, social support, and technology use. (2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates participants’ perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. (3) Ideation: Desired Features reports participant recommendations for designing digital health tools for palliative care domains.
Conclusion: Digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to health care providers, patients, and the caregiving social convoy.
Africa is characterized by a high burden of disease and health system deficits, with an overwhelming and increasing demand for palliative care (PC). Yet only one African country is currently considered to have advanced integration of palliative care into medical services and generalized PC is said to be available in only a handful of others. The integration of PC into all levels of a health system has been called for to increase access to PC and to strengthen health systems. Contextually appropriate evidence to guide integration is vital yet limited. This qualitative systematic review analyses interventions to integrate PC into African health systems to provide insight into the ‘how’ of PC integration. Forty articles were identified, describing 51 different interventions. This study found that a variety of integration models are being applied, with limited best practices being evaluated and repeated in other contexts. Interventions typically focused on integrating specialized PC services into individual or multiple health facilities, with only a few examples of PC integrated at a population level. Four identified issues could either promote integration (by being present) or block integration (by their absence). These include the provision of PC at all levels of the health system alongside curative care; the development and presence of sustainable partnerships; health systems and workers that can support integration; and lastly, placing the client, their family and community at the centre of integration. These echo the broader literature on integration of health services generally. There is currently a strong suggestion that the integration of PC contributes to health system strengthening; however, this is not well evidenced in the literature and future interventions would benefit from placing health systems strengthening at the forefront, as well as situating their work within the context of integration of health services more generally.
Background: Advance care planning (ACP) facilitates identification and documentation of patients’ treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers.
Methods: This is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants’ experiences and attitudes about ACP. Qualitative content analysis was adopted to analyze both manifest content and latent content.
Results: A total of 17 patients and 13 family caregivers participated in our study. The qualitative analysis identified four barriers to ACP: 1) limited patients’ participation in autonomous decision making, 2) cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early discussion, and 4) unprepared healthcare professionals and healthcare system.
Conclusions: Participations of seriously ill patients, family caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers.
Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers’ support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely.
Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life.
Design: Longitudinal qualitative study with thematic analysis.
Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention.
Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the ‘right’ people to implement the intervention and (3) practical implementation challenges.
Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.
Background: The worldwide need for palliative care is high, especially in mid- income countries like Ecuador, where the percentage of patients receiving such care is very small due to the scarcity of infrastructure and specialized personnel and to the unequal distribution in the country. The objective of this study is to explore the knowledge, attitudes and expectations related to palliative care of the physicians in Ecuador.
Methods: A qualitative study based on 28 semi-structured interviews, from March 2014 to November 2016, with physicians working in four cities in Ecuador recruited through the snowball technique. Thematic analysis was developed supported by the ATLAS.ti software.
Results: Five core themes were identified: (1) training, (2) health policy, (3) professionals’ activities, (4) health services and (5) development of palliative care in Ecuador.
Conclusions: Strategies are needed which intensify the training of medical professional in palliative care, as well as avail the human resources and materials for providing it.
Patient portals can play an innovative role in facilitating advanced care planning (ACP) and documenting advance directives (ADs) among older adults with multiple chronic conditions. The objective of this qualitative sub-study was to (1) understand older adults’ use of an ACP patient portal section and (2) obtain user-design input on AD documentation features. Although some older adults may be reluctant, participants reported likely to use a portal for ADs with proper portal design and support.
Background: Communication and shared decision-making (SDM) are essential to patient-centered care. Hospital-based palliative care with patients with limited health literacy (LHL) poses particular demands on communication. In this context, patients’ emotions and vulnerable condition impact their skills to obtain, understand, process and apply information about health and healthcare even more. If healthcare providers (HCPs) meet these demands, it could enhance communication. In this study, HCPs were interviewed and asked for their strategies, barriers and suggestions for improvement regarding communication and SDM with LHL patients in hospital-based palliative care.
Methods: qualitative interview study was conducted in 2018 in four Dutch hospitals with 17 HCPs—11 physicians and 6 nurses. Transcripts were analyzed using thematic analysis.
Results: In general HCPs recognized limited literacy as a concept, however, they did not recognize limited health literacy. Regarding SDM some HCPs were strong advocates, others did not believe in SDM as a concept and perceived it as unfeasible. Furthermore, five themes, acting as either strategies, barriers or suggestions for improvement emerged from the interviews: 1) time management; 2) HCPs’ communication skills; 3) information tailoring; 4) characteristics of patients and significant others; 5) the content of the medical information.
Conclusions: According to HCPs, more time to communicate with their patients could resolve the most prominent barriers emerged from this study. Further research should investigate the organizational possibilities for this and the actual effectiveness of additional time on effective communication and SDM. Additionally, more awareness for the concept of LHL is needed as a precondition for recognizing LHL. Furthermore, future research should be directed towards opportunities for tailoring communication, and the extent to which limited knowledge and complex information affect communication and SDM. This study provides first insights into perspectives of HCPs, indicating directions for research on communication, SDM and LHL in hospital-based palliative care.