PURPOSE: The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to contribute to meeting minor children's need for information about their parents' illness and prognosis. Previous research has shown that many parents withhold information about illness and anticipated death from their children. This study explored main considerations for palliative health-care professionals in these situations, and how they negotiate conflicting considerations of confidentiality and child involvement.
METHOD: This qualitative exploratory study involved semi-structured interviews with 11 palliative health-care professionals. Hermeneutics informed the data analysis.
RESULTS: The health professionals' main considerations were sustaining patients' hope and building trust in the professional-patient relationship. Both concerns were grounded in respect for patient autonomy. The health professionals negotiated patient autonomy and child involvement in different ways, defined in the present analysis on a continuum ranging from granting full patient autonomy to going directly against patients' will.
CONCLUSIONS: The professional-patient relationship is the primary consideration in the health care context, and decision making on the degree of children's involvement happens in a dialogical process between health professionals and patients. Close professional-patient relationships might increase the emotional impacts on health professionals, who consequently might give greater relative weight to patients' will. We propose that procedures for initiating collaboration with professionals in the child's everyday life context help health professionals involving the child without threatening trust.
BACKGROUND: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved.
AIM: To explore healthcare professionals' experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members.
DESIGN: Qualitative design, including focus group discussions.
SETTING/PARTICIPANTS: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital's palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals (n = 53) from different care settings.
RESULTS: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement.A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals.
CONCLUSION: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.
PURPOSE: Defining patients as 'terminally-ill' may be difficult. Therefore, determining when to shift the goal of care from curative to comfort care may be extremely challenging. The aim of this study was to merge when and how Registered Nurses (RNs) and Nurses' Assistants (NAs) adjust end-of-life care to pursue patient comfort at the end of their lives.
METHODS: A descriptive qualitative study based on multiple focus groups was performed in 2017 according to the COnsolidated criteria for REporting Qualitative research guidelines. In all, 25 RNs and 16 NAs across seven north-east Italian facilities that provide end-of-life care, voluntarily participated in the study. Each focus group was conducted following the same interview guide with open-ended questions, and was audiotaped. A thematic analysis was applied to interview transcripts.
RESULTS: The process of nursing care plan adjustment is based upon two main themes, around 'when' and 'how' to adjust it. Regarding when, 'Detecting the turning point', and 'Being ready to change continuously until the end' emerged as the main sub-themes. Regarding how, 'Weighing harms and benefits of nursing care interventions'; 'Advocating for patients' wishes', 'Sharing the adjustments inside the team at different levels', 'Involving family in the adjustments of nursing care'; and 'Allowing care to move away from evidence-based practice' were the sub-themes emerged.
CONCLUSIONS: Shedding light on the implicit decisional processes that inform care adjustments and the implementation of related strategies is essential to improve the quality of end-of-life care given that an early detection of the terminal phase has been reported to result in changes of care improving outcomes.
BACKGROUND: Most French people (71%) would like to die at home, but only one out of four actually do. While the difficulties inherent in the practice of home-based palliative care are well described, few studies highlight the resources currently used by general practitioners (GPs) in real life. We have therefore sought to highlight the resources actually used by GPs providing home-based palliative care.
METHODS: Twenty-one GPs of different ages and practice patterns agreed to participate to this qualitative study based upon semi-structured interviews. They were recruited according to a purposive sampling. Transcripts analysis was based upon General Inductive Analysis.
RESULTS: The resources highlighted have been classified into two main categories according to whether they were internal or external to the GPs. The internal resources raised included the doctor's practical experience and continuous medical education, personal history, work time organization and a tacit moral contract related to the referring GP's position. External resources included resource personnel, regional assistance platforms and health facilities, legislation.
CONCLUSION: This study provides a simple list that is easy to share and pragmatic solutions for GPs and policymakers. Home-based palliative care practice can simultaneously be burdensome and yet a fulfilling, meaningful activity, depending on self-efficacy and professional exhaustion (burnout), perhaps to a greater extent than on medical knowledge. Home-based palliative care promotion is a matter of social responsibility. The availability of multidisciplinary teams such as regional assistance platforms and Hospitalization at Home is particularly important for the management of palliative care. Policymakers should consolidate these specific resources out of hospitals, in community settings where the patients wish to end their life.
BACKGROUND: Medical Assistance in Dying comprises interventions that can be provided by medical practitioners to cause death of a person at their request if they meet predefined criteria. In June 2016, Medical Assistance in Dying became legal in Canada, sparking intense debate in the palliative care community.
AIM: This study aims to explore the experience of frontline palliative care providers about the impact of Medical Assistance in Dying on palliative care practice.
DESIGN: Qualitative descriptive design using semi-structured interviews and thematic analysis.
SETTINGS/PARTICIPANTS: We interviewed palliative care physicians and nurses who practiced in settings where patients could access Medical Assistance in Dying for at least 6 months before and after its legalization. Purposeful sampling was used to recruit participants with diverse personal views and experiences with assisted death. Conceptual saturation was achieved after interviewing 23 palliative care providers (13 physicians and 10 nurses) in Southern Ontario.
RESULTS: Themes identified included a new dying experience with assisted death; challenges with symptom control; challenges with communication; impact on palliative care providers personally and on their relationships with patients; and consumption of palliative care resources to support assisted death.
CONCLUSION: Medical Assistance in Dying has had a profound impact on palliative care providers and their practice. Communication training with access to resources for ethical decision-making and a review of legislation may help address new challenges. Further research is needed to understand palliative care provider distress around Medical Assistance in Dying, and additional resources are necessary to support palliative care delivery.
OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.
DESIGN: Qualitative study using interviews and focus groups.
SETTING: Health and Social Care Services in the North of England.
PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members.
RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.
CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.
OBJECTIVES: This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN: This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTING: All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS: We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS: Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS: Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
Depuis plusieurs décennies, de nombreux rapports insistent sur la nécessité de diffuser les soins palliatifs en formant les étudiants en médecine à cette pratique. Dans ce contexte, l’évaluation des dispositifs pédagogiques est un impératif. Une recherche qualitative est réalisée auprès de 18 internes en médecine ayant effectué un stage de 6 mois dans une équipe de soins palliatifs, fixe ou mobile. Cette étude exploratoire vise à recueillir le retour qu’ils font sur leurs vécus lors du stage, les compétences qu’ils ont acquises, leurs appréciations sur les modalités pédagogiques. Après analyse des entretiens, cinq thématiques sont identifiées. Les internes décrivent une déstabilisation initiale en début de stage. Ils relatent un renforcement de leurs compétences professionnelles avec l’apprentissage d’un meilleur rapport à leurs émotions. Ils font le constat que de nombreuses compétences sont transférables dans leur spécialité, mais que, bien souvent, la compétence délibérative ne peut être vécue qu’individuellement. Ils mentionnent une expérience de questionnement et de réflexivité sur leur parcours professionnel et personnel. Ils soulignent le rôle favorable de l’accompagnement pédagogique. Si l’apport d’un stage en équipe de soins palliatifs apparaît manifeste, il importe que les référents pédagogiques mènent une réflexion éthique afin de bien comprendre les fondements de la clinique palliative mais aussi les décalages, les tensions, voire les paradoxes vis-à-vis du référentiel médical actuel.
Les unités de soins palliatifs françaises peuvent accueillir des patients en phase terminale de leur maladie, mais aussi des patients qui bénéficient encore de traitement spécifique pouvant stabiliser la maladie à long terme. Or, nous ignorons comment ces soins palliatifs, qui cohabitent avec des traitements spécifiques de la pathologie et pouvant stabiliser la maladie à plus ou moins long terme, se pratiquent par les médecins qui travaillent dans ces unités d’hospitalisation. Nous avons mené une étude qualitative avec des professionnels médicaux et paramédicaux d’une USP française afin de décrire la pratique médicale en unité de soins palliatifs. Quatre « focus-groups » ont été menés avec 3 professionnels médicaux et 4 avec 11 professionnels paramédicaux. Les compétences réflexive et analytique étaient prépondérantes dans le discours des interviewés. Si l’incertitude n’était pas expressément nommée dans notre étude, elle était présente dans chaque geste ou comportement visant à comprendre la singularité du patient. Cette étude originale contribue à comprendre comment sont mis en œuvre les soins palliatifs en situation d’incertitude médicale.
Introduction : La plupart des Français souhaitent mourir à domicile mais peu d’entre eux y décèdent réellement. L’expression par le patient de son souhait sur le lieu de son décès en favorise le respect, mais les médecins connaissent peu ces souhaits. L’objectif de l’étude est de recueillir la façon dont les personnes en situation palliative à domicile envisagent d’aborder le lieu de décès avec leur médecin généraliste.
Méthode : Une étude qualitative a été réalisée par entretiens individuels semi-dirigés au domicile des personnes atteintes d’une pathologie incurable avec un pronostic vital entre 4 semaines et 2 ans.
Résultats : 15 entretiens ont été menés. La plupart des personnes interrogées souhaitent mourir à la maison, proche des leurs, mais le besoin d’être accompagné et de préserver leur entourage semble être plus important pour elles. Elles attendent que le médecin traitant aborde la fin de vie et le lieu de décès avec disponibilité, écoute et bienveillance, et qu’il y montre de l’intérêt. L’émergence de trois profils (paternaliste, autonomiste et intermédiaire) illustre la façon dont elles envisagent ces discussions avec leur médecin traitant.
Discussion : Les personnes en situation palliative à domicile attendent que le médecin traitant aborde la fin de vie avec une attitude adaptée au profil de chacun. Une consultation dédiée permettrait au médecin généraliste de créer des conditions favorables afin de donner au malade une opportunité d’aborder ce sujet sensible et de respecter ses souhaits.
Conclusion : Les malades souhaitent une implication du médecin généraliste dans les discussions anticipées.
BACKGROUND: Palliative care is typically performed in-hospital. However, Emergency Medical Service (EMS) providers are uniquely positioned to deliver early palliative care as they are often the first point of medical contact. The aim of this study was to gather the perspectives of advanced life support (ALS) providers within the South African private EMS sector regarding pre-hospital palliative care in terms of its importance, feasibility and barriers to its practice.
METHODS: A qualitative study design employing semi-structured one-on-one interviews was used. Six interviews with experienced, higher education qualified, South African ALS providers were conducted. Content analysis, with an inductive-dominant approach, was performed to identify categories within verbatim transcripts of the interview audio-recordings.
RESULTS: Four categories arose from analysis of six interviews: 1) need for pre-hospital palliative care, 2) function of pre-hospital healthcare providers concerning palliative care, 3) challenges to pre-hospital palliative care and 4) ideas for implementing pre-hospital palliative care. According to the interviewees of this study, pre-hospital palliative care in South Africa is needed and EMS providers can play a valuable role, however, many challenges such as a lack of education and EMS system and mindset barriers exist.
CONCLUSION: Challenges to pre-hospital palliative care may be overcome by development of guidelines, training, and a multi-disciplinary approach to pre-hospital palliative care.
PURPOSE: Patients' readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals' uncertainty about patients' readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients' readiness is expressed and develops throughout an ACP conversation.
METHODS: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted.
RESULTS: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one's disease. Signs of not being ready included limiting one's perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced.
CONCLUSION: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.
Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training.
Methods: This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets.
Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP.
Conclusions: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.
BACKGROUND: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life.
AIM: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage.
DESIGN: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach.
SETTING/PARTICIPANTS: Twenty-one workers employed within three public services in Western Sydney were recruited.
RESULTS: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural.
CONCLUSIONS: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.
BACKGROUND: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss.
AIM: The aim of this study was to explore informal caregivers' perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer.
RESEARCH DESIGN AND METHOD: The study was founded upon Gadamer's philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings.
ETHICAL CONSIDERATION: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study.
RESULTS: Three main sources important in preserving the older women's dignity were identified: maintaining one's self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object.
DISCUSSION AND FINAL CONSIDERATIONS: On the individual level, the opportunity to maintain one's self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women's dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women's living space, these perspectives should be emphasized in healthcare professionals' educational training and in the municipal end-of-life care of these patients.
BACKGROUND: Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis.
AIM: The aim of the present study is to explore how the introduction of these features by law improves the experience of end-of-life care.
DESIGN: Five focus groups were conducted in Italy 1 year after the new law on advance directives was introduced.
SETTING/PARTICIPANTS: Purposive sampling was used to recruit 24 health professionals and 23 family caregivers of patients with amyotrophic lateral sclerosis, for a total of 47 participants.
RESULTS: The thematic analysis, conducted through the use of ATLAS.ti software, identified four thematic areas: best practices, managing difficulties, care relationships and proposals. The results indicated a lack of organization, collaboration and continuity on the part of healthcare services and professionals, a lack of information on palliative care, advance care planning, and advance directives. End-of-life care is often left to the good will of the individual professional. Difficulties can also derive from ethical dilemmas concerning end-of-life decision-making and from a lack of communication and relationships between health professionals, patients and their families.
CONCLUSION: The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.
Background: Malignant fungating wounds occur in advanced cancer patients, often in the last 6 to 12 months of life, when malignant cells breach the skin, causing a non-healing wound. Little is known about the perspectives of clinicians who treat these patients or how collaboration is facilitated among different specialties.
Objective: To understand the experiences and perceived roles of clinicians who treat patients with malignant fungating wounds from a multidisciplinary perspective.
Design: A qualitative study using narrative interviews was conducted and data was analyzed to identify themes that encompass the experiences of clinicians who treat patients malignant fungating wounds and put these experiences in a temporal context.
Setting/subjects: Ten clinicians who treat patients with malignant fungating wounds (n = 10) from various metropolitan research hospitals were interviewed. The clinicians were of different disciplines, including physicians and nurses, and different specialties, including palliative care, oncology, and wound care.
Results: Three themes emerged that described how clinicians of varying disciplines and specialties understood their roles and navigated the transition from curative to palliative care for patients with malignant fungating wounds: (1) making the best of fragmented care (2) collaboration between oncology and wound care (3) transitioning from curative to palliative care.
Conclusion: Findings of the study present a timeline of clinical care for patients, with different specialties taking the lead at different points in clinical time. Recognizing when collaboration between specialties is essential, as well as when communication fails, or clinicians have differing perspectives is important to facilitate the best care possible for patients.
OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer.
METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors.
RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead.
CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.
OBJECTIVE: End-of-life (EOL) care is a developing concept in India, with well-established practices in certain states like Kerala, but not in all the states. As there is a substantial stigma associated with death discussion across the Indian population, the experiences of caregivers of people with advanced cancer have not been explored. Our aim in this study was to explore the experience and perceptions of caregivers of people diagnosed with advanced cancer regarding the quality of the individuals' death.
METHODS: An exploratory study where the caregivers (n = 108) of advanced cancer patients, who died either during hospitalization or at home, were interviewed to assess quality of death (QOD), using an open-ended question to explore the sufferings of the patients in the final days and caregivers' coping mechanism.
RESULTS: Majority of the patients died at home (n = 79, 73.1%). The thematic analysis of the transcripts resulted in seven sub-themes, which were categorized under four major themes, namely 'bodily discomfort', 'psychological experiences' with the sub-themes resilience and existential distress, 'awareness of prognoses' with the sub-themes aware, unaware and conjecture, and 'carers coping' with the sub-themes perceived strain and contentment.
CONCLUSION: Patients under EOL care experience physical and psychological suffering, as reported by the caregivers. Efforts must be undertaken to reduce suffering by means of improving focus on and strengthening symptom management and enhancing psychosocial support, for optimally utilizing the available interventions to manage the physical symptoms and to address the psychosocial issues.
BACKGROUND: Family communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists' and nurses' perceptions of family involvement in decision making about forgoing cancer-specific treatment in patients with advanced cancer.
MATERIALS AND METHODS: Qualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life.
RESULTS: We could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient-focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts.
CONCLUSION: The main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy.
IMPLICATIONS FOR PRACTICE: This study focused on oncologists' and oncology nurses' perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients' emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.