Background: Early integration of palliative care can improve outcomes for people with cancer and non-cancer diagnoses. However, prediction of survival for individuals is challenging, in particular in patients with haematological malignancies who are known to have limited access to palliative care. The ‘Surprise’-Question can be used to facilitate referral to palliative care.
Aim: To explore experiences, views and perceptions of haemato-oncologists on the use of the ‘Surprise’-Question in the haemato-oncology outpatients clinics of a university hospital in Germany.
Design: A qualitative study using individual semi-structured interviews transcribed verbatim and analysed thematically based on the framework approach.
Setting/participants: The study took place at the haemato-oncology outpatient clinic and the bone marrow transplantation outpatient clinic of a university hospital. Nine haemato-oncologists participated in qualitative interviews.
Results: Thematic analysis identified 4 themes and 11 subthemes: (1) meaning and relevance of the ‘Surprise’-Question; (2) feasibility; (3) the concept of ‘surprise’ and (4) personal aspects of prognostication. A key function of the ‘Surprise’-Question was to stimulate intuition and promote patient-centred goals of care by initiating a process of pause reflection change of perspective. It was easy and quick to use, but required time and communication skills to act on. Participants’ training in palliative care enhanced their willingness to use the ‘Surprise’-Question.
Conclusion: Irrespective of its use in prognostication, the ‘Surprise’-Question is a valuable tool to facilitate consideration of patient-centred goals and promote holistic care in haemato-oncology. However, prognostic uncertainty, lack of time and communication skills are barriers for integration into daily practice. Further research should involve haematology patients to integrate their needs and preferences.
Aim: The aim of our research was to explore the unfulfilled needs of patients with a progressive neurological disease in advanced stage of the illness within the current system of health and social care in the Czech Republic.
Design and Setting: Qualitative research (grounded theory) was used to conceptualize the patterns of unmet palliative care needs in Czech Republic.
Methods: The data collection method comprised individual, in-depth interviews (n = 19) and focus groups (n = 4) where a total of 52 respondents participated (patients with progressive neurological diseases [PNDs], family members, and professionals).
Results: Two main categories of unfulfilled needs were determined (life with the disease, professional help), and they were described in the context of the 3 crucial themes identified in the study—the symptoms of the advanced stage of the disease resulted in substantial reduction of physical self-sufficiency, loss of autonomy, and social isolation; the level of dependence on the support and help of others increased; the patients also highlighted several problems related to health-care services.
Conclusion: The unmet needs should be taken into consideration when creating the concept of the neuropalliative and rehabilitation care, including the mental health support plan, because of the emotional, behavioral, and cognitive disorders that frequently occur in the lives of a substantial amount of patients with PND.
Cet article est le deuxième d'une série de deux qui se voit consacré au concept de présence chez les infirmières en soins palliatifs (SP), dans le cadre de la programmation de recherche SATIN II (SATisfaction, le sens au travail et le bien-être des INfirmières, Fillion et al. 2017). Le premier article visait à mieux comprendre l'expérience vécue de la présence selon le point de vue d'infirmières en SP. La présente étude qualitative a pour sa part comme objectif d'explorer les effets possibles d'une intervention de groupe basée sur le sens et la pleine conscience sur l'expérience de la présence des infirmières. Des entretiens semi-structurés ont été menés auprès de huit infirmières qui oeuvraient exclusivement dans un service de SP après leur participation à l'intervention de groupe. Nos analyses des récits des participantes nous ont permis de catégoriser en deux groupes les effets de l'intervention sur la présence des infirmières, soit les bienfaits de l'intervention : 1) être plus présente à soi ; 2) mieux faire face au stress du quotidien ; 3) revenir au "ici et maintenant" ; 4) accroître sa conscience de la présence et 5) donner sens au prendre soin. Nous avons également soulevé certains défis associés à l'intervention. En conclusion, notre recherche souligne la nécessité d'accompagner les soignants dans leur pratique de la présence et de la pleine conscience dans le cadre de leur travail.
Cet article est le premier d'une série de deux qui abordent l'expérience de la présence d'infirmières en soins palliatifs (SP) dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Dans cette étude qualitative, nous nous sommes intéressées à l'expérience de la présence telle que vécue et comprise par les infirmières en SP au regard des enjeux actuels du travail en SP au Québec. Huit infirmières qui oeuvraient exclusivement dans un service de SP spécialisés ont été rencontrées. Des entretiens semi-structurés ont été conduits avant et après la participation à une intervention de groupe sur le sens et la pleine conscience offerte dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Cet article se limite au temps 1 de l'étude. Notre analyse phénoménologique-interprétative (Smith et Osborn, 2007) a révélé que les participantes vivaient et comprenaient initialement la présence comme 1) une mise au diapason et 2) une rencontre avec l'autre et 3) d'un besoin de maîtriser le temps. Notre étude a également démontré que l'expérience de la présence peut (re)donner un sens au travail en SP. Finalement, nous avons pu élaborer une définition de la présence qui pourrait faciliter l'enseignement, l'apprentissage et le développement de la présence chez les infirmières de toutes disciplines.
BACKGROUND: Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants' experiences and opinions were investigated as part of this development process.
METHODS: The aim of this qualitative study was to explore and describe health care professionals' experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation.
RESULTS: In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals' carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers' needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care.
CONCLUSIONS: Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.
AIMS AND OBJECTIVES: To explore the advantages and disadvantages of using video consultations, as experienced by specialized palliative care healthcare professionals, who are involved in palliative care at home.
BACKGROUND: One challenge in the work of specialized palliative care teams, is the substantial resources used in terms of time and transport to and from the patient's home. Video consultations may be a solution for real-time specialized palliative home-care.
DESIGNS: Hermeneutic, post phenomenology.
METHODS: An explorative qualitative study utilizing data from field notes of an autobiographical diary, participant observations and semi-structured interviews with healthcare professionals. The COREQ guideline was used for reporting the study. See Supplementary File 1. The data collection took place in patients' homes, and at the Department of Oncology, Odense University Hospital, Denmark.
RESULTS: Eight participants (n=8); five community nurses and three specialized palliative care team members - a head physician, a physiotherapist and a nurse - participated in the study. The healthcare professionals' knowledge was based on n=82 video consultations with 11 patients. The range of video consultations was 3-18 per patient. The use of tablets in video consultations facilitated direct palliative care and led the community nurses and the specialized palliative care team nurse to co-operate. Potential barriers against using video consultations are the discussions about personal, and private issues regarding the illness, while family members are present.
CONCLUSIONS: Video consultations in specialized palliative home care are feasible, and the technology can facilitate multidisciplinary participation and cooperation among healthcare professionals. The continuous use of video consultations over time may increase the quality of specialized palliative home-care.
RELEVANCE TO CLINICAL PRACTICE: The use of video consultations can provide direct specialized palliative care over distance involving healthcare professionals, patients and their relatives.
Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population.
Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings.
Results: We found that it is important to incorporate patients' cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient-provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.
Background: The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self.
Objective: In this research, we explored 'concerns' - one of the four aspects in the World Health Organisation's conceptualisation of QoL - towards adding to the literature.
Methods: In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant's concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS.
Findings: The analysis showed that concerns for significant others contribute to participant's QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self.
Discussion: The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others.
BACKGROUND: Under Quebec's Act respecting end-of-life care, physicians may refuse to provide medical aid in dying because of personal convictions, also called conscientious objections. Before legalisation, the results of our survey showed that the majority of physicians were in favour of medical aid in dying (76%), but one-third (28%) were not prepared to perform it. After 18 months of legalisation, physicians were refusing far more frequently than the pre-Act survey had anticipated.
AIM: To explore the conscientious objections stated by physicians so as to understand why some of them refuse to get involved in their patients' medical aid in dying requests.
DESIGN/PARTICIPANTS: An exploratory qualitative study based on semi-structured interviews with 22 physicians who expressed a refusal after they received a request for medical aid in dying. Thematic descriptive analysis was used to analyse physicians' motives for their conscientious objections and the reasons behind it.
RESULTS: The majority of physicians who refused to participate did not oppose medical aid in dying. The reason most often cited is not based on moral and religious grounds. Rather, the emotional burden related to this act and the fear of psychological repercussions were the most expressed motivations for not participating in medical aid in dying.
CONCLUSION: The originality of this research is based on what the actual perception is of doing medical aid in dying as opposed to merely a conceptual assent. Further explorations are required in order to support policy decisions such as access to better emotional supports for providers and interdisciplinary support.
OBJECTIVE: This study examined advance care planning as delivered by general practice registrars and recently fellowed GPs in New South Wales rural settings. The facilitators and barriers to advance care planning uptake in these areas were investigated, as well as the state of general practice training on advance care planning.
DESIGN: Qualitative descriptive methodology, involving semi-structured face-to-face and telephone interviews.
SETTING: Primary care.
PARTICIPANTS: General practice registrars and recently fellowed GPs in New South Wales rural settings. Definition of rural using the Australian Standard Geographical Classification - Remoteness Area. Thirteen participants were included in the study.
MAIN OUTCOME MEASURES: Thematic analysis of interview transcripts elucidated key issues emerging from participants' accounts.
RESULTS: Key barriers included doctor-dependent uptake, demands on doctor's time and the limited relevant resources available. Facilitators recognised were patient control in end-of-life care and long-standing relationships between GPs and their patients. Uptake among patients was low, and minimal training on advance care planning reported.
CONCLUSION: The lack of training opportunities in advance care planning during vocational training, especially when combined with the essential role played by rural GPs in initiating advance care planning and providing end-of-life care, appears to be a major problem that might contribute to poor uptake among patients in rural areas. This study demonstrated, however, the significant benefits that advance care planning could bring in patients living in rural communities if delivered effectively. Given that rural GPs face a number of barriers to providing routine health care, these results highlight an important need to provide GPs and rural communities with support, education, incentive, better administrative tools, options and greater awareness of advance care planning.
BACKGROUND: International evidence on the outcome of generalist versus specialist palliative care provision in palliative care trajectories is limited and varied. In general, intervention studies can influence the organisation of palliative care practice and professional collaborations. However, randomised clinical trials in palliative care rarely consider the organisational significance of the studies, as experienced by the professionals involved. DOMUS is the abbreviation for a Danish intervention study designed as a randomised clinical trial, investigating an accelerated transition from oncological to specialist palliative care at home for patients with incurable cancer. Alongside conducting the palliative care intervention study, we wanted to discover the perspectives of the healthcare professionals involved.
AIM: To explore the organisational significance of the DOMUS intervention study as experienced by the professionals involved.
DESIGN: A qualitative interview study, using thematic content analysis and inspired by organisational theory.
SETTING/PARTICIPANTS: Thirty-eight professionals from four units involved in the DOMUS intervention study took part in 10 groups and six individual interviews.
RESULTS: The DOMUS randomised clinical trial intervention influenced and sometimes disrupted both the ways of organising, collaborating and practising palliative care, and patients' and relatives' understanding of their own situation. It did this by (1) referring a broader palliative care target group to specialist palliative care, leading to (2) different palliative care needs, professional tasks, and perceived impact on (3) the organisation of palliative care and (4) professional collaboration.
CONCLUSION: Professionals involved in the DOMUS palliative care intervention found that the study had organisational significance, with an influence on professionals, patients and relatives. Specialist palliative care in Denmark is devoted organisationally and professionally to patients with severe or complex palliative care needs. Hence, new ways of organising palliative care for people in the earlier stages of their disease are needed.
BACKGROUND: Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients' care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Furthermore, the experiences and needs of patients and proxies themselves are unknown. Therefore, this study aims to explore which problems and needs patients with SUD and multiple problems, and their proxies, experience in a PC phase.
METHODS: Data-collection of this qualitative study consisted of semi-structured interviews with patients with SUD and multiple problems in a PC phase, and their proxies, about their experiences in PC and their well-being. Interviews were inductively analyzed.
RESULTS: Nine patients and three proxies were included. Six patients suffered from COPD, one patient from cirrhosis of the liver and two patients from both. Seven patients stayed in a nursing home and two had a room in either a social care service (hostel) or an assisted living home where medical care was provided. Five themes were identified: 1) healthcare delivery (including HCPs behaviour and values); 2) end-of-life (EOL) preferences (mostly concerning only the individual patient and the 'here-and-the-now'); 3) multidimensional problems; 4) coping (active and passive) and; 5) closed communication. Proxies' experiences with healthcare differed. Emotionally, they were all burdened by their histories with the patients.
CONCLUSIONS: This study shows that talking about and anticipating on PC with this patient-group appears hard due to patients' closed and avoiding communication. Furthermore, some of patients' EOL-preferences and needs, and coping-strategies, seem to differ from the more generally-accepted ideas and practices. Therefore, educating HCPs in communicating with this patient-group, is needed.
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.
Objective: Survival chances of people with cancer in Nigeria are far worse than those in developed countries. While the chance of finding a lasting solution to cancer in Nigeria is remote, patients living with cancer still need treatment regardless of the terminal outcome, and hence cancer palliative care is necessitated. Caring patterns and expressions differ in diverse contexts. Therefore, this article aimed to present the meanings and expectations of caring and the resulting transformative theory of practice.
Methods: A descriptive, qualitative inquiry was conducted with a purposive sample of 12 cancer palliative patients, 9 nurses, 3 physicians, and 5 relatives who were approached for an in-depth interview about their conceived meanings and expectations of caring for or being cared for in the cancer palliative unit.
Results: Cancer palliative care in Nigeria is best exemplified through the processes/themes of "knowing," "revealing," and "humanizing." The meaning of care and the expectations of the patients and caregivers were grouped into these three overarching processes which then informed the conceptualization of a germinal theory of knowing-revealing-humanizing (TKRH) as expressions of caring in cancer palliative care.
Conclusions: The application of the KRH practice processes is illustrated as a transformative germinal theory of practice. This TKRH as expressions of caring is transformative and can restore positive meanings in the life-world of persons in the cancer palliative care setting.
OBJECTIVES: This study aimed to explore the construct of dignity of the patient-family dyad in hospice palliative care, as well as its influencing factors from the perspective of hospice palliative care staff.
METHODS: A qualitative descriptive study was conducted with 34 staff members from a residential hospice in Amherst, USA, and an inpatient palliative care unit in Winnipeg, Canada, between September 2013 and December 2016. Data were collected through semistructured interviews and were analysed using the thematic analysis approach.
RESULTS: Findings suggested that staff members viewed dignity as something that is reciprocally supported within the patient-family unit. Themes including respect, comfort, privacy, being informed and quality family time were common in the conceptualisation of dignity in patients and families; themes of being human and being self, autonomy and living with dignity were uniquely used to conceptualise patient dignity. Themes solely constituting family dignity included being included in care, being capable and being treated fairly. Cultural considerations, environmental factors, teamwork and patient/family-staff relationship were the factors identified by staff members that affected dignity in hospice palliative care.
CONCLUSION: Findings of this study provide insights into the development of strategies to support the dignity of the patient-family unit in hospice palliative care.
BACKGROUND: Early start of palliative care improves the quality of life of eligible patients and their relatives. However, in hospital, patients who could benefit from palliative care are often not identified timely. The aim of this study is to assess how hospital-based nurses and physicians define the palliative phase, how they identify the palliative phase and what difficulties they face.
METHODS: Semi-structured interviews were held with ten nurses and 18 physicians working at seven hospitals in the Netherlands. Data was analysed using thematic analysis.
RESULTS: Nurses and physicians feel insecure about how to define the palliative phase and differentiate between an acute and extended phase. Great variation existed in what life expectancy is attributed to each phase. A variety of ways to identify the palliative phase were described: 1) Prognostication. 2) Treatment trade-off. 3) Assessment of patients' preferences and needs. 4) Interprofessional collaboration. Professionals base prognostication on their experience but also search for clinical indicators. When benefits of treatment no longer outweigh the negatives, this was considered an, albeit late, identification point. To start a conversation on a patients' palliative care needs was found to be difficult. Therefore, some respondents wait for patients to vocalize preferences themselves. Many professionals rely on interprofessional collaboration for identification, however uncertainty exist about responsibilities. Difficulties in identification occurred because of variance in definitions, unpredictability of non-oncological diseases, focus on treatment and difficulties in communication and collaboration.
CONCLUSION: These results provide insight into the challenges and difficulties hospital-based professionals experience in timely identification of patients with palliative care needs.
BACKGROUND: Parkinson's disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals' experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands.
METHODS: This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis.
RESULTS: Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons' needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity.
CONCLUSIONS: Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons' preferences. Additional training can help to become more knowledgeable and confident.
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant, by examining the perspectives of bereaved parents, professional photographers, and health care professionals. Twenty semistructured interviews were conducted, and interview transcripts were analyzed using modified grounded theory. Twenty-three individuals participated, including 6 bereaved parents, 8 photographers, and 9 health care professionals. Analyses generated 5 major themes describing ways in which the photographs were valuable to parents: validation of the experience, permission to share, creation of a permanent and tangible legacy, creation of positive memories, and moving forward after the loss. Hospitals should consider incorporation of professional bereavement photography services into palliative care and bereavement programs.
Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia.
Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia.
Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care.
Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.
Although male suicide has received research attention, the gendered experiences of men bereaved by male suicide are poorly understood. Addressing this knowledge gap, we share findings drawn from a photovoice study of Canadian-based men who had lost a male friend, partner, or family member to suicide. Two categories depicting the men's overall account of the suicide were inductively derived: (a) unforeseen suicide and (b) rationalized suicide. The "unforeseen suicides" referred to deaths that occurred without warning wherein participants spoke to tensions between having no idea that the deceased was at risk while reflecting on what they might have done to prevent the suicide. In contrast, "rationalized suicides" detailed an array of preexisting risk factors including mental illness and/or substance overuse to discuss cause-effect scenarios. Commonalities in unforeseen and rationalized suicides are discussed in the overarching theme, "managing emotions" whereby participants distanced themselves, but also drew meaning from the suicide.