Dying at "home" - a qualitative study of end-of-life care in rural Northern Norway from the perspective of health care professionals.

BACKGROUND: 'Most patients want to die at home' is a familiar statement in palliative care. The rate of home deaths is therefore often used as a success criterion. However, providing palliative care and enabling patients to die at home in rural and remote areas may be challenging due to limited health care resources and geographical factors. In this study we explored health care professionals' experiences and reflections on providing palliative care to patients at the end of life in rural Northern Norway. METHODS: This is a qualitative focus group and interview study in rural Northern Norway including 52 health care professionals. Five uni-professional focus group discussions were followed by five interprofessional focus group discussions and six individual interviews. Transcripts were analysed thematically. RESULTS: Health care professionals did their utmost to fulfil patients' wishes to die at home. They described pros and cons of providing palliative care in rural communities, especially their dual roles as health care professionals and neighbours, friends or even relatives of patients. Continuity and carers' important contributions were underlined. When home death was considered difficult or impossible, nurses expressed a pragmatic attitude, and the concept of home was extended to include 'home place' in the form of local health care facilities. CONCLUSIONS: Providing palliative care in patients' homes is professionally and ethically challenging, and health care professionals' dual roles in rural areas may lead to additional pressure. These factors need to be considered and addressed in discussions of the organization of care. Nurses' pragmatic attitude when transfer to a local health care facility was necessary underlines the importance of building on local knowledge and collaboration. Systematic use of advance care planning may be one way of facilitating discussions between patients, family carers and health care professionals with the aim of achieving mutual understanding of what is feasible in a rural context.

Talking together in rural palliative care: a qualitative study of interprofessional collaboration in Norway.

BACKGROUND: Caring for people with palliative care needs in their homes requires close collaboration within and between primary and hospital care. However, such close collaboration is often lacking. Transitions of care are potentially unsafe and distressing points in a patient trajectory. Few studies have explored the experiences of healthcare professionals in the community who receive patients from hospital care and provide them with palliative care at home. OBJECTIVE: To explore how rural health professionals experience local and regional collaboration on patients in need of palliative care. METHODS: This was a qualitative focus group and interview study in rural Northern Norway involving 52 primary care health professionals including district nurses, general practitioners, oncology nurses, physiotherapists, and occupational therapists. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically. RESULTS: "Talking together" was perceived as the optimal form of collaboration, both within primary care and with specialists. Nurses and GPs had similar perceptions of their worst-case scenario in primary palliative care: the sudden arrival after working hours of a sick patient about whom they lacked information. These situations could be the result of a short notice transfer from secondary care or an emergency presentation after a crisis in patient management locally, the latter often resulting in a hospital admission. Participants missed timely and detailed discharge letters and in complex cases a telephone call or conference. Locally, co-location was perceived as advantageous for crucial communication, mutual support, and knowledge about each other's competencies and work schedule. Because local health professionals belonged to different units within the primary health care organisation, in some places they had limited knowledge about each other's roles and skill sets. CONCLUSIONS: Lack of communication, both locally and between specialist and primary care, was a key factor in the worst-case patient scenarios for GPs and nurses working in primary palliative care in rural Northern Norway. Co-location of primary care professionals promoted local collaboration and should be encouraged. Hospital discharge planning should involve the receiving primary care professionals.

Experiences of older patients with cancer from the radiotherapy pathway - A qualitative study.

PURPOSE: To explore and describe experiences of older patients with cancer throughout their radiotherapy treatment, from diagnosis until follow-up after treatment. METHODS: Individual interviews were conducted to explore different phases of radiotherapy. Interviews were recorded and transcribed verbatim. Inductive content analysis was applied. Each interview was coded separately. Then to the codes were analyzed further, and an overall theme was developed. RESULTS: Twelve older patients with cancer, (7 male, 5 female) aged ≥ 65 related their experiences from radiotherapy treatment. A main theme describes the essence of their experiences; Understanding "just enough". The theme comprises five main categories: Understandable, adapted information is crucial for trusting health services; Previous experiences influence patients' perception and understanding; Involvement of next of kin is crucial to patients' comprehension; Professional treatment decisions and well-organized treatment determines satisfaction and Experiences of cooperation and coordination of services affects dependability. CONCLUSIONS: Findings from this study describe how understanding "just enough" - not too much nor too little - may assist older patients with cancer in participating in treatment decisions, preventing false beliefs, feeling reassured during treatment and in navigating the complex health care system. Next of kin are important assets for older patients with cancer in understanding "just enough". Cancer nurses may map comprehension of information, as well as reveal patients' previous experiences.

Patient experiences of waiting times in standardised cancer patient pathways in Norway - a qualitative interview study.

OBJECTIVE: Standardised cancer patient pathways (CPP) are implemented within cancer care with an aim to ensure standardised waiting times for diagnosis and treatment. This article investigates how patients in Norway experience waiting times within a CPP. METHODS: Qualitative semi-structured interviews with 19 patients who had been through CPP for breast cancer, prostate cancer or malignant melanoma in Norway. RESULTS: Few patients knew about the term CPP but trusted that waiting times were standardised to decrease mortality. Their experiences of waiting depended on their expectations as much as the period they waited. Patients generally felt safe about the timing of treatment, but not all expectations of a rapid response from health services were met. Short waiting times were interpreted as a sign of urgency, and a change of pace between urgent action and prolonged periods of waiting were disturbing. CONCLUSIONS: Patients are comforted by knowing they are within a structured CPP that ensures rapid diagnosis and start of treatment. CPPs still need to be improved to avoid delays, allow for adaptions to patient needs, and include more information to avoid stress.

Adapting and Going the Extra Mile: A Qualitative Study of Palliative Care in Rural Northern Norway From the Perspective of Healthcare Providers.

BACKGROUND: Despite significant developments in palliative care in recent decades, we still find important differences in access to and delivery of care in rural Norway. OBJECTIVE: The aim of this study was to explore what healthcare professionals consider necessary to provide equality in care for palliative patients in rural areas. METHODS: A qualitative approach with focus group discussions and individual interviews with 52 health professionals was used, starting with 5 uniprofessional focus groups of general practitioners and nurses/cancer nurses, followed by 5 interprofessional groups and 6 individual interviews. Interview transcripts were analyzed thematically. RESULTS: We found local variations in organization, competence and access to palliative care, and challenging geographical conditions. It was essential to be proactive, flexible and willing to go the extra mile, but this may conceal the need for a stronger focus on competence and organization of palliative care. Access to written guidelines and practical tools was important, as was forming palliative teams for particular situations. CONCLUSIONS: Palliative care needs strengthening in rural areas, and increased competence for all healthcare professionals is vital to increase equality in care. Geographical conditions require locally adapted solutions. Access to guidelines and interprofessional collaboration are essential. IMPLICATIONS FOR PRACTICE: Rural palliative care needs in Norway are improving, as exemplified by at least 1 cancer nurse assigned to each local authority, and access to guidelines and palliative tools and interprofessional collaboration.

Evaluating a centralised cancer support centre in the remote region of Northern Norway.

INTRODUCTION: Being diagnosed with cancer and undergoing treatment is a life-changing experience, and many cancer patients find the physical, emotional and social effects of the disease to be stressful. This study explores the experiences of cancer patients and their relatives from all parts of Northern Norway visiting the centralised cancer support centre. METHODS: In a comprehensive prospective survey, 286 visitors were invited to participate and 181 of these accepted. The characteristics of the participants, their expectations for visiting the centre, whether they wanted to meet peers or volunteers rather than clinicians and how they viewed the centre in the context of cancer care were evaluated. RESULTS: Most satisfied were visitors aged less than 50 years, women and those reporting a 'strong social network'. The majority of the visitors wanted to have better access to peers (with a similar cancer diagnosis) (89%), cancer nurses (75%) or oncologists (71%). About a third of the participants (29.8%) lived in communities with fewer than 5000 inhabitants and 59.4% in municipalities with fewer than 15 inhabitants/km2. There were no significant differences in the characteristics of the participants, or in their evaluation of the support centre, when stratified by number of inhabitants or population density in their home community. CONCLUSION: The cancer support centre was highly valued by patients and their relatives for meeting peers. The centre was most frequently visited by and most popular among women and those self-reporting strong social networks. Access to oncology doctors and nurses in this setting could be valuable. Participants living in remote areas had similar characteristics and evaluated the support centre similarly to those living in more urban areas.

Teamwork in primary palliative care: general practitioners' and specialised oncology nurses' complementary competencies.

BACKGROUND: Generalists such as general practitioners and district nurses have been the main actors in community palliative care in Norway. Specialised oncology nurses with postgraduate palliative training are increasingly becoming involved. There is little research on their contribution. This study explores how general practitioners (GPs) and oncology nurses (ONs) experience their collaboration in primary palliative care. METHODS: A qualitative focus group and interview study in rural Northern Norway, involving 52 health professionals. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically. RESULTS: The ideal cooperation between GPs and ONs was as a "meeting of experts" with complementary competencies. GPs drew on their generalist backgrounds, including their often long-term relationship with and knowledge of the patient. The ONs contributed longitudinal clinical observations and used their specialised knowledge to make treatment suggestions. While ONs were often experienced and many had developed a form of pattern recognition, they needed GPs' competencies for complex clinical judgements. However, ONs sometimes lacked timely advice from GPs, and could feel left alone with sick patients. To avoid this, some ONs bypassed GPs and contacted palliative specialists directly. While traditional professional hierarchies were not a barrier, we found that organization, funding and remuneration were significant barriers to cooperation. GPs often did not have time to meet with ONs to discuss shared patients. We also found that ONs and GPs had different strategies for learning. While ONs belonged to a networking nursing collective aiming for continuous quality improvement, GPs learned mostly from their individual experience of caring for patients. CONCLUSIONS: The complementary competences and autonomous roles of a specialised nurse and a general practitioner represented a good match for primary palliative care. When planning high-quality teamwork in primary care, organizational barriers to cooperation and different cultures for learning need consideration.

Adapting an Australian question prompt list in oncology to a Norwegian setting-a combined method approach.

PURPOSE: A question prompt list (QPL) is an inexpensive communication aid that has been proved effective in encouraging patients to ask questions during medical consultations. The aim of this project was to develop a QPL for Norwegian cancer patients. METHODS: A multimethod approach was chosen combining literature review, focus groups, and a survey in the process of culturally adjusting an Australian QPL for the Norwegian setting. Participants were recruited from the University Hospital of North Norway. They were asked to review and comment on iterative drafts of the QPL. RESULTS: Eighteen patients, mean age 54, participated in the focus groups, and 31 patients, mean age 55, participated in the survey. Focus groups suggested that topics related to accompanying relatives, children as next of kin, and rehabilitation were important and should be added to the original QPL. The survey revealed that most questions from the original QPL were considered both useful and understandable. Although half of the patients found some questions about prognosis unpleasant, the vast majority considered the same questions useful. Questions regarding clinical studies, multidisciplinary teams, and public versus private hospitals had lower ratings of usefulness. CONCLUSION: QPLs require some adjustment to the local cultural context, and a mixed method approach may provide a useful model for future cultural adaptation of QPLs. The present QPL has been adjusted to the needs of oncology patients in the Norwegian health care setting.

In the middle and on the sideline: the experience of spouses of men with prostate cancer.

BACKGROUND: Spouses play an important role in how well patients with prostate cancer manage their illness. Whereas earlier studies mostly included both patients and spouses, this study focuses on the spouses' experiences during the course of the illness. OBJECTIVE: The objective of this study was to explore how the daily life of female spouses is affected by their husband's prostate cancer. METHODS: Qualitative interviews were conducted with 9 spouses of men receiving potential curative treatment for prostate cancer. RESULTS: Prostate cancer in men had significant impact on spouses' everyday life. The results showed that spouses strived to achieve a balance between focusing on their own needs and meeting their husbands' needs along the course of the illness. Four themes emerged: strong and optimistic versus vulnerable and overstrained, maintaining the partner's sense of manhood, being on the sideline, and the need for relationships outside the immediate family. CONCLUSION: Being a spouse to a man with prostate cancer is emotionally and practically demanding. There is a danger of the spouses suppressing their own needs in the process of supporting their husbands. Those spouses living in the situation over a period of years expressed fatigue and a shift in focus from their husbands' needs to their own needs for support. IMPLICATIONS FOR PRACTICE: Healthcare providers should provide support for spouses during the course of the illness, encourage spouses to participate in seminars for couples living with prostate cancer, and be aware of the potential for situational fatigue in spouses many years after the diagnosis.

Dealing with a troublesome body: a qualitative interview study of men's experiences living with prostate cancer treated with endocrine therapy.

PURPOSE: Endocrine therapy for prostate cancer causes substantial side effects, and previous studies have focused on the impacts on sexuality and masculinity. Little is known about how men experience bodily alterations in everyday life through the course of the prostate cancer and treatment. The aim of this study was to show how men with prostate cancer experience bodily changes and how these alterations influence daily life. METHOD: The study was conducted via qualitative interviews with a phenomenological hermeneutic approach. We interviewed ten men (aged 58-83) with prostate cancer who received endocrine therapy as the primary treatment method. RESULTS: The results showed that five themes were important for the men's experiences of their bodily alterations throughout the course of the illness: "something is 'wrong'", "when the body becomes troublesome", "to be well or to be ill", "dealing with the alterations" and "to talk about cancer and the intimate details". Initially, the shock of receiving a cancer diagnosis and the physical changes in their bodies were at the forefront of many patients' minds. Eventually, the impact of the side effects became more evident, which caused problems in everyday life. Yet, the men were able to reflect on the impact of treatment on their everyday lives. CONCLUSION: This study showed that hormone treatment has a significant influence, both directly and indirectly, on the bodies of prostate cancer patients. The experiences of men with prostate cancer may lead to feelings of loss of identity on an existential level.

Bridging the distance: a prospective tele-oncology study in Northern Norway.

PURPOSE: The University Hospital of North Norway (UNN) is a tertiary-level hospital and has the main responsibility of providing specialized cancer health care in the remote area of Northern Norway. Weekly videoconferences (VCs) have been established to enable clinicians at a local hospital and primary cancer health care providers in five different communities to discuss cases with specialist cancer care services at UNN. In this study, we aimed to evaluate the feasibility of these VCs. METHODS: This is a prospective registration study. Descriptive data were collected at UNN, and for each patient discussed at the VC, a survey was completed by the local health care provider responsible for the patient. RESULTS: During an 18-month period, 167 cases were discussed (101 patients). A median of 7 health care providers participated in each VC. According to the local physicians and nurses, the VCs contributed in 96% of cases to give "quite a bit" or "very much" confidence in adequate patient care. They reported that patient care in 85% of cases would be improved "quite a bit" or "very much" due to the VC. The mean number of days waiting for VC were 2.0 days (range, 0-7; SD, 2.0) and was significantly shorter (P < 0.001) than the estimated time waiting if alternative consultations were to be used (mean, 10.2 days (range, 0-30; SD, 5.8)). CONCLUSION: VC may be a useful supplemental tool to support primary health care providers at local hospitals and remote communities in their effort to offer efficient and high-quality cancer care.

Hit by waves-living with local advanced or localized prostate cancer treated with endocrine therapy or under active surveillance.

BACKGROUND: Previous studies of living with prostate cancer have shown that the illness and the treatment cause physical as well as psychosocial problems. OBJECTIVE: The aim of this study was to illuminate men's experiences living with localized or local advanced prostate cancer when curative treatment such as surgery or radiation therapy is not an option at the time of diagnosis. METHODS: The study was conducted via qualitative interviews, using a phenomenological hermeneutic approach. Ten men treated with endocrine therapy or under active surveillance were interviewed. RESULTS: Being diagnosed with prostate cancer was described as a shock, with different aspects of the illness revealed gradually. The limited amount of time available for meeting with health care providers contributed to patients' feelings of being left alone with difficulty getting information and help. Sexual and urinary problems were perceived as a threat to their manhood. The spouses provided the closest everyday support. CONCLUSION: The life situation of these patients can be understood as living in a "state of readiness," expecting something to happen regarding their illness, and not always knowing where to get help. IMPLICATIONS FOR PRACTICE: The results confirm existing knowledge of patient's experiences in living with prostate cancer regarding the initial shock perceived by the patients, the bodily alterations, and the important role of their spouses. Nurses, as well as general practitioners, must play a more active role in follow-up to ensure that the men and their spouses receive better help and support.

[Nausea, vomiting and constipation in palliative care]. / Kvalme, oppkast og obstipasjon i palliasjonsbehandling.

Nausea/vomiting and constipation are frequent symptoms among patients with advanced disease and short survival expectancy. The aim of this paper is to present the aetiology, diagnostic work-up, prophylaxis and treatment of these symptoms in palliative patients, based on a literature review and clinical experience. Nausea/vomiting is not a diagnosis, but symptoms with multiple causes. There is no universally applicable treatment approach. General guidelines for good treatment are: 1) impeccable assessment and work-up, 2) choice of treatment according to underlying causes and involved mechanisms, 3) pharmacological treatment applied jointly with non-pharmacological measures, 4) thorough follow-up and readjustment of treatment. During work-up, or if underlying causes can not be identified, metoclopramide, alternatively haloperidol, is the first drug of choice. Oral administration should be avoided until vomiting is controlled. Adequate hydration is important. The same general guidelines are applicable to handle constipation. However, prophylactic measures are also essential, focusing on risk factors (fluid intake, activity and toilet accommodations). Stool softening laxatives should be administered, (polyethylene glycol or lactulose), and if needed, combined with a bowel stimulant (bisacodyl or sodium picosulphate). Opioid use is among the most common causes of constipation and prescription of opioids should always be accompanied by prescription of laxatives. Exceptions are diarrhoea, ileostomy and dying patients.