OBJECTIVE: To know the facilities and difficulties the palliative care team professionals experience in the implementation process of advance healthcare directives.
METHOD: Exploratory-descriptive study with a qualitative approach, involving 51 professionals from seven palliative care teams in the state of Rio Grande do Sul, Brazil. The data were collected between December 2018 and April 2019 and discursive textual analysis was applied.
RESULTS: The facilities found were: the approach by the palliative care team; listening and respecting patients' wishes; effective communication between professionals, patients, and family members and resolution of difficult situations. The difficulties reported were: legal issues; the lack of knowledge of professionals about the subject; the lack of institutional protocols; the difficulty in talking about death and the family barrier.
CONCLUSION: Despite the perceived facilities and difficulties, palliative care professionals intend to work based on the patients' desires and will, aiming to offer dignity in the dying process.
Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
Objective: The purpose of this study was to explore healthcare provider-perceived challenges to HBPC patient referral and elicited providers’ feedback for overcoming these challenges.
Methods: We conducted a qualitative study using semi-structured interviews with 25 Medicaid managed care providers (primary care physicians, nurse practitioners, and care managers) working in the greater Los Angeles area. Our interview protocol elicited providers’ knowledge and awareness of palliative care; perceived barriers to HBPC referral; and suggestions for overcoming these barriers. We analyzed verbatim transcripts using a grounded theory approach.
Results: Themes related to referral barriers included providers’ lack of palliative care knowledge and clarity regarding referral processes, provider reluctance to refer to HBPC, and provider culture. Providers also identified patient-level barriers, including financial barriers, reluctance to have home visits, health literacy, cultural barriers, and challenges related to living situations. Themes related to methods for overcoming challenges included increased HBPC education and outreach to providers, specifically by HBPC agency staff.
Conclusions: Findings from this study underscore the need for additional palliative care education for Medicaid healthcare providers. They point to the need for novel strategies and approaches to address the myriad barriers to patient identification and referral to HBPC.
AIMS: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges.
DESIGN: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a "whole-ward" approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central.
METHODS: From observed and audio-recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines.
RESULTS: Residents actively relayed their preferences regarding healthcare and end-of-life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident-focused. However, involving residents was also challenging, findings included: residents' preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end-of-life care.
CONCLUSIONS: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision-making can improve communication and resident involvement, reinforcing a relational understanding of autonomy.
IMPACT: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person-centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents.
METHODS: As part of a larger study examining shared decision-making near the end-of-life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis.
RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning.
CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at end-of-life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
Critical considerations of space and place at the end of life have been limited in the social science literature. To address this gap, we draw on empirical data from two interrelated but separate qualitative Australian data sets to critically examine dying in relation to considerations of space, place and affect. These studies share the primary aim to better understand and articulate end-of-life experiences, with one using video reflexive ethnography and the other semi-structured interviews with patients. Challenging the broader valorisation of particular places of dying and death (e.g. home, hospice, hospital), we critically explore the meanings and affects of space and place and how they are rooted in normative expectations. Drawing on participant accounts we interrogate simplistic concepts of home versus hospice, or hospital versus community, developing a critical social science of the intersections of space and place at the end of life.
Objective: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).
Methods: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12–18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19–24 years). Findings were shared with participants, and feedback helped to interpret the findings.
Results: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.
Conclusion: Young people’s priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
Purpose: Prolonged living with chronic illness and disability expands the discussion of end-of-life conversation because of the complex role of intercommunication among patient, family, and healthcare staff. Little is known about such interaction from participants’ different perspectives. This qualitative case study examined end-of-life conversation among patient, family, and staff during long-term hospitalization in a neurological rehabilitation department.
Methods: After the patient’s death, 18 participants responded to in-depth semi-structured interviews: 16 healthcare staff and two family members (the patient’s wife and brother). In addition, we used the wife’s autoethnographic documentation of her experiences during end-of-life conversation.
Results: Thematic analysis produced three themes: (1) The Rehabilitation Department’s Mission – Toward Life or Death? (2) The Staff’s Perception of the Patient; (3) Containing Death: End-of-life Conversation from Both Sides of the Bed. These themes represented participants’ different perspectives in the intercommunication in overt and covert dialogues, which changed over time. Death’s presence–absence was expressed by movement between clinging to life and anticipating death.
Conclusion: The study findings emphasize the importance of practitioners’ training to accept and openly discuss death as an inseparable part of life-long disability, and the implementation of this stance during end-of-life care via sensitive conversations with patients and their families.
IMPLICATIONS FOR REHABILITATION It is vital for rehabilitation professionals to be trained to process and accept end-of-life issues as a natural and inseparable part of the life discourse among people with disabilities and their families. Rehabilitation professionals need to acquire tools to grasp the spoken and unspoken issues related to life and death, and to communicate their impressions and understandings with people with disabilities and their families. Rehabilitation professionals need to encourage an open dialogue when communicating with people with disabilities and their families on processes related to parting and death.
AIMS: This study explored perceptions on a good-life, good-death, and advance care planning in Koreans with non-cancerous chronic diseases with the goal to develop a culture-specific advance care planning intervention in this population.
DESIGN: A qualitative descriptive design was used.
METHODS: Data collections were conducted between September 2017 - June 2018. Twenty-nine patients aged 41-82 years (85.8% men) participated in the interviews lasting 40-60 min. The verbatim transcriptions of the semi-structured interview data were analysed using conventional content analysis.
RESULTS: Good-life was described as 'present with physical and financial independence,' 'not burdensome to the family,' 'completed life responsibility', and 'helping others.' Some participants described good-death as 'prepared death' while others considered it as 'sudden death during sleep.' All participants wanted to have a painless death and not burden the family. Advance care planning was a new concept to many participants. It was likened to 'insurance.' Some participants believed that decision-making on life-sustaining treatment should be done by their family, not themselves, because of economic or emotional distress. Some participants wanted to discuss medical and non-medical care services to reduce the burden on self and family.
CONCLUSION: Family is key when it comes to the meaning of good-life and good-death. Cultural adaptation is necessary to meet the advance care planning needs of Koreans with non-cancerous chronic diseases.
IMPACT: Successfully implementing advance care planning in Koreans with non-cancerous chronic diseases depends on how it is adapted to the disease-specific characteristics compared with cancer, and the cultural norms and social context. Nurses need to be prepared to offer advance care planning to persons with non-cancerous chronic diseases based on a keen sense of and empathetic cultural competence.
PURPOSE: recent data show that there is limited evidence and guidance regarding the best practices for the integration of palliative care (PC) and end-of-life (EOL) post-stroke. The purpose of this meta-synthesis is to understand the PC/EOL experiences after a stroke.
METHODS: a meta-synthesis was conducted to answer the following research question-What are post-stroke PC/EOL experiences from the perspectives of patients, families and healthcare professionals (HCPs)? This approach was completed through two main phases-a systematic search and appraisal of the literature and reciprocal translation with interpretive triangulation of the extracted data. Databases searched were MEDLINE, EMBASE, PsycINFO, Joanna Briggs Institute and CINAHL databases (from their inception to April 2020). After data were extracted, a qualitative exploratory design was used to evaluate the PC/EOL in post-stroke experiences.
RESULTS: the search identified 696 studies. A total of 14 studies were included in this meta-synthesis as they satisfied our eligibility criteria. Uncertainty post-stroke was the overarching main theme that emerged across post-stroke PC/EOL experiences. Within this theme of uncertainty, opportunities to decrease uncertainty emerged from two interdependent themes-presence of cohesive communication and shared dynamic decision process for both families and HCPs.
CONCLUSIONS: to mitigate the degree of uncertainty post-stroke, HCPs should be present, provide clear direct communication and incorporate the value-based goals of care within their medical treatment plan. These findings suggest that future research is needed to focus on how PC approaches can be integrated into stroke care programmes.
OBJECTIVES: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care.
DESIGN: Longitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis.
SETTING: Community and hospital settings in the West Midlands, UK.
PARTICIPANTS: Children with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members.
FINDINGS: 31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of 'fighting' a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child's condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family's emotional burden.
CONCLUSIONS: There is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.
BACKGROUND: Although the culture in burns/critical care units is gradually evolving to support the delivery of palliative/end of life care, how clinicians experience the end of life phase in the burn unit remains minimally explored with a general lack of guidelines to support them.
AIM: To explore the end of life care experiences of burn care staff and ascertain how their experiences can facilitate the development of clinical guidelines.
DESIGN: Interpretive-descriptive qualitative approach with a sequential two phased multiple data collection strategies was employed (face to face semi-structured in-depth interviews and follow-up consultative meeting). Thematic analysis was used to analyze the data.
SETTING/PARTICIPANTS: The study was undertaken in a large teaching hospital in Ghana. Twenty burn care staff who had a minimum of 6 months working experience completed the interviews and 22 practitioners participated in the consultative meeting.
RESULTS: Experiences of burn care staff are complex with four themes emerging: (1) evaluating injury severity and prognostication, (2) nature of existing system of care, (3) perceived patient needs, and (4) considerations for palliative care in burns. Guidelines in this regard should focus on facilitating communication between the patient and family and staff, holistic symptom management at the end of life, and post-bereavement support for family members and burn care practitioners.
CONCLUSIONS: The end of life period in the burn unit is poorly defined coupled with prognostic uncertainty. Collaborative model of practice and further training are required to support the integration of palliative care in the burn unit.
New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers’ views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group’s recommendations that were informed by a thematic analysis of the focus group data. The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video.
BACKGROUND: The interprofessional approach is part of the philosophy in palliative care, and its benefits are already documented. However, there are no evidence regarding the process through which the interprofessional team faces the process of the patient's end-of-life and how this experience might be of value for the team's development itself. The aim of this study was to analyse and understand the psychosocial processes that occurs when an interprofessional team accompanies patients and their families to death in palliative care, with the ultimate aim to develop a substantive theory to describe this phenomenon.
METHODS: A Grounded Theory method, as theorized by Strauss and Corbin, was adopted for this study. Data were collected through semi-structured interviews and then independently analysed using constant comparison analysis. Fourteen healthcare professionals - belonging to different disciplines (doctor, nurse coordinator, nurse, nurse assistant, psychologist) - were interviewed in a Northern Italy palliative care facility.
FINDINGS: The core category of this study was identified to be the process of accompaniment of the dying patient as an interprofessional ecosystem. Moreover, the results showed four main factors determining the development of the core psychosocial process: from professionals' 'Hidden Amazement' to 'Onerous Happiness' where 'Weaving of Professional Resources' and 'Work Meaning' are the underlying conditions to catalyse the process itself.
CONCLUSION: Interprofessional care appears an essential value, which becomes the source of the team's strength when facing end-of-life experiences. Health policies and organisations should take the importance of the characteristics of the work environment more carefully. The meaning that professionals attribute to their work and to the team itself, indeed, it may have impact on the overall quality of care and contribute to sustain work engagement, even in stressful situations like end-of-life care.
Purpose: While the 0–10 pain scale is often used to assess treatment response, it may not accurately reflect change in pain over time. The purpose of this study is to correlate pain improvement using the 0–10 pain scale to patients’ perceived improvement in pain following palliative radiation therapy (RT), and to qualitatively characterize themes of pain assessment.
Methods: Patients age = 20 receiving RT for spinal metastases were enrolled. Patients rated their pain (0–10) at the treatment site at RT start, and 1 and 4 weeks post-RT completion. At 1 and 4 weeks post-RT, patients reported their perceived percent improvement in pain (pPIP) (0–100%), which was compared to calculated percent improvement in pain (cPIP) based on the 0–10 pain scores. At 4 weeks post-RT, 20 randomly selected patients participated in a qualitative pain assessment.
Results: Sixty-four patients treated at 1–2 sites were analyzed. At 1 week post-RT completion, 53.7% (36/67) reported pPIP within 10 percentage points of cPIP, 32.8% (22/67) reported pPIP > 10 percentage points higher than cPIP, and 13.4% (9/67) reported pPIP > 10 percentage points lower than cPIP. Similar degrees of discordance were seen at 4 weeks post-RT. Qualitative analysis revealed five themes: pain quality (n = 19), activities (n = 9), function (n = 7), medication use (n = 2), and radiation side effects (n = 1).
Conclusions: About half of patients reported a pPIP substantially disparate from their cPIP, and the change in pain measured by the 0–10 scale tended to underestimate the degree of perceived pain improvement. Multiple themes were identified in qualitative analysis of pain response.
OBJECTIVE: To explore family members' experiences of advance care planning in nursing homes.
DESIGN: Individual interviews. Thematic analysis.
SETTING: Four nursing homes in Sweden.
SUBJECTS: Eighteen family members of deceased nursing home patients.
MAIN OUTCOME MEASURES: Family members' experiences of advance care planning in nursing homes.
RESULTS: Family members' experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient's preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient's wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician's absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions.
CONCLUSION: Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient's wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning. Key points Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members' feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.
CONTEXT: Health systems have aspired to integrate palliative care (PC) into the emergency department (ED) in order to improve care quality for over a decade, yet there are very few examples of implemented models in the literature. The COVID-19 pandemic led to an increase in the volume of seriously ill patients in EDs and a consequent rapid increase in PC integration in many EDs.
OBJECTIVE: To describe the new PC-ED delivery innovations that emerged during the COVID-19 pandemic.
METHODS: For this qualitative study of PC programs in EDs, semi-structured interviews were conducted with ED and PC clinicians between June 30, 2020 and August 18, 2020. Participants were asked about PC-ED integration before, during and after COVID. We conducted a two-phased rapid analysis (RA) using a RA template and consolidated matrix to identify innovations.
RESULTS: Using purposive and snowball sampling, we interviewed 31 participants, representing 52 hospitals. Several new innovations in care delivery were identified. These included elements of fully embedded PC, the use of PC extenders, technology both within the electronic medical record (EMR) and outside of it, and innovations in training emergency clinicians in primary palliative care skills to support care delivery. Most PC efforts focused on increasing goals of care conversations. Institutions that implemented these programs reported that they increased PC utilization in the ED, were well received by clinicians, and changed patient's care trajectories.
CONCLUSIONS: Several new innovations in PC-ED care delivery emerged during COVID. Many innovations leveraged different types of clinicians to deliver care, an increased physical presence of PC in the ED, and used technology to enhance care delivery. These innovations may serve as a framework for institutions as they plan for evolving needs in the ED during and after COVID. Additional research is needed to evaluate the impact of these programs and to understand their applicability beyond the pandemic.
CONTEXT: Current studies suggested that cultural and religious factors, as well as law and policy, may have impeded the advancement of palliative care in the Middle East. Little is known about healthcare providers' perceptions of palliative care and the barriers to its development in the Gulf Cooperation Council (GCC)
OBJECTIVES: To understand healthcare professionals' attitudes and beliefs regarding palliative care and to highlight current practice barriers in Bahrain.
METHODS: Semistructured interviews with 16 healthcare providers (physicians and nurses) were conducted. Thematic analysis was then performed after interviews were transcribed verbatim.
RESULTS: Healthcare professionals perceived palliative care as a service only delivered to patients at the end-of-life. Palliative care was only offered to patients who have been diagnosed with cancer and had exhausted all curative treatments. Do-Not-Resuscitate orders and Code Status discussions are not currently practiced. Palliative care decisions are usually decided by patients' families. Middle Eastern culture, healthcare law and policy, conservative interpretations of Islam and a lack of professional expertise were identified as barriers.
CONCLUSION: This study unveiled the perceptions of palliative care among healthcare professionals in a GCC country. Six major barriers that hindered palliative care practice were identified. Future healthcare policy in the region needs to address these barriers within the current healthcare system while taking culture, religion, and social factors into consideration.
Many international studies have shown that the process of palliative sedation in an end-of-life context can be an adverse, even emotionally distressing experience for nurses. However, to the best of our knowledge, the experience of nurses working in palliative care in Switzerland has never been explored. The purpose of our study was, therefore, to understand and describe nurses' experience with the process of palliative sedation in line with the Swiss guidelines developed in 2005. We opted for an exploratory qualitative monocentric study using comprehensive individual interviews to achieve this objective. A total of 10 nurses were approached, and nine agreed to take part. After the interviews were transcribed, eight were ultimately included in the analysis. This analysis shows that nurses' attitudes toward the process of palliative sedation tended to be hesitant, resistant, or confident and that this was linked to the length of time they had worked in palliative care. These findings suggest that the 2005 Swiss guidelines do not protect nurses against the uncertainty related to process of palliative sedation. A national comprehensive multicentric study therefore needs to be developed to consolidate these results.