| 1. |
- Abou-Zeid, Nancy, et al.
(författare)
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Towards a cancer mission in Horizon Europe: recommendations
- 2020
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Ingår i: Molecular Oncology. - : Wiley Open Access. - 1878-0261 .- 1574-7891. ; 14:8, s. 1589-1615
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Tidskriftsartikel (refereegranskat)abstract
- A comprehensive translational cancer research approach focused on personalized and precision medicine, and covering the entire cancer research–care–prevention continuum has the potential to achieve in 2030 a 10-year cancer-specific survival for 75% of patients diagnosed in European Union (EU) member states with a well-developed healthcare system. Concerted actions across this continuum that spans from basic and preclinical research through clinical and prevention research to outcomes research, along with the establishment of interconnected high-quality infrastructures for translational research, clinical and prevention trials and outcomes research, will ensure that science-driven and social innovations benefit patients and individuals at risk across the EU. European infrastructures involving comprehensive cancer centres (CCCs) and CCC-like entities will provide researchers with access to the required critical mass of patients, biological materials and technological resources and can bridge research with healthcare systems. Here, we prioritize research areas to ensure a balanced research portfolio and provide recommendations for achieving key targets. Meeting these targets will require harmonization of EU and national priorities and policies, improved research coordination at the national, regional and EU level and increasingly efficient and flexible funding mechanisms. Long-term support by the EU and commitment of Member States to specialized schemes are also needed for the establishment and sustainability of trans-border infrastructures and networks. In addition to effectively engaging policymakers, all relevant stakeholders within the entire continuum should consensually inform policy through evidence-based advice.
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| 2. |
- Godskesen, Tove
(författare)
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Patients in Clinical Cancer Trials : Understanding, Motivation and Hope
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to study participants' understanding of clinical cancer trials, and their motivation for participation. Of particular interest was the question of whether the patients hoped for a cure resulting from the trial. The thesis was based on four studies and used three methods: interviews, a questionnaire, and empirical bioethics. The results of Study I indicated that the participants in phase 1 trials understood most of the information provided, but were unaware of both the very small potential for treatment benefit, and the risk of harm. Patients in phase 3 trials had a good understanding of the trial, except regarding side effects and their right to withdraw. Some found it hard to ask questions and felt they needed more information (Study III). The participants in phase 1 trials were strongly motivated by the generally unrealistic hope for therapeutic benefit (Study I). When the chances of a cure are minuscule, as for participants with end-stage cancer in phase 1 trials, hope can play an important, positive role and offer meaning to one’s remaining life. However, hope for an unrealistic outcome could also deprive patients of an opportunity to spend their remaining lives, as they would otherwise choose (Study II). The participants in phase 3 trials indicated that their motivation for participation was multifaceted; the most common motivations included hope of therapeutic benefit, altruism, access to extra clinical examinations or better care, and a wish to repay society for the help they had received (Study III). After stratifying and analysing the motivation data by gender, age, education and previous experience of trial participation, males and those aged ≥65 years were significantly more motivated to participate out of a desire to reciprocate the help they had received, either because of a sense of duty or because their families or friends considered that they should attend (Study IV). In conclusion, the informed consent process seems to work relatively well, with good results within most subgroups. However, patients with end-stage cancer who are participating in phase 1 trials are a vulnerable group as they have very little potential for treatment benefit coupled with a tangible risk of harm.
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| 3. |
- Strang, Susann, 1953, et al.
(författare)
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Palliative care in COPD-web survey in Sweden highlights the current situation for a vulnerable group of patients.
- 2013
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Ingår i: Upsala journal of medical sciences. - : Uppsala Medical Society. - 2000-1967 .- 0300-9734. ; 118:3, s. 181-6
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Background. Chronic obstructive pulmonary disease (COPD) is a common cause of death. Despite the heavy symptom burden in late stages, these patients are relatively seldom referred to specialist palliative care. Methods. A web-based survey concerning medical and organizational aspects of palliative care in COPD was distributed to respiratory physicians in Sweden. There were 93 respondents included in the study. Results. Palliative care issues were regularly discussed with the patients according to a third of the respondents. About half of the respondents worked in settings where established routines for co-operation with palliative units were available at least to some extent. Less than half of the respondents (39%) were aware of current plans to develop palliative care, either as a co-operative effort or within the facility. Palliative care is focused on physical, psychological, social, and existential dimensions, and the proportions of respondents providing support within these dimensions, 'always' or 'often', were 83%, 36%, 32%, and 11%, respectively. Thus, to treat the physical dimensions was perceived as much more obvious than to address the other dimensions. Conclusions. The survey indicates that the priorities and resources for palliative care in COPD are insufficient in Sweden. The data, despite limitations, reveal a lack of established team-work with specialized palliative care units and actual plans for such co-operation.
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| 4. |
- Strang, S, et al.
(författare)
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Spiritual thoughts, coping and 'sense of coherence' in brain tumour patients and their spouses
- 2001
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 15:2, s. 127-134
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Tidskriftsartikel (refereegranskat)abstract
- When a person is diagnosed with a life-threatening disease, existential questions are easily triggered. The aims of this study were to explore to what extent brain tumour patients and their next of kin were able to cope, understand and create meaning in their situation, to explore whether spirituality could be supportive and to analyse whether these concepts are related to Antonovsky's concept of sense of coherence. Using a purposive sampling technique, 20 patients and 16 of their next of kin look part in tape-recorded interviews. A content and context analysis was performed using a hermeneutic approach. We found that comprehensibility was to a large extent constructed by the patient's own thoughts and theories, despite an insecure situation. Manageability was achieved by active information-seeking strategies, by social support and by coping, including positive reinterpretation of the situation. Meaningfulness was central for quality of life and was created by close relations and faith, as well as by work. A crucial factor was whether the person had a 'fighting spirit' that motivated him or her to go on. As only three patients were believers, trust in God had generally been replaced by a belief and confidence in oneself, in science, in positive thinking and by closeness to nature. Sense of coherence as a concept can explain how exposed persons handle their situation. In its construction, sence of coherence integrates essential parts of the stress/coping model (comprehensibility, manageability) and of spirituality (meaning).
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| 5. |
- Strang, Susann, 1953, et al.
(författare)
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Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: A qualitative study of caregivers' and professionals' experiences in Swedish hospitals
- 2019
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Objectives Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective. Design A qualitative interview study involving semi-structured interviews and analysed with content analysis. Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3-4) COPD and 17 healthcare staff. Results Two main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself. Conclusions Our findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.
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| 6. |
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| 7. |
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| 8. |
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| 9. |
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| 10. |
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| 11. |
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| 12. |
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| 13. |
- Babor, Thomas, et al.
(författare)
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Drug Policy and the Public Good
- 2018. - 2
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Bok (refereegranskat)abstract
- Drug Policy and the Public Good presents the accumulated scientific knowledge of direct relevance to the development of drug policy on local, national, and international levels. The book explores both illicit drug use and non-medical use of prescription medications within a public health perspective. A conceptual basis for a rational drug policy is presented, along with new epidemiological data on the global dimensions of drug misuse, significant trends in drug epidemics, and the global burden of disease attributable to drug misuse. The markets for both illicit and legally prescribed psychoactive substances are described, showing that these two sources of drug supply are becoming increasingly connected in many countries. The core of the book is a critical review of the cumulative scientific evidence in five general areas of drug policy: primary prevention programmes in schools and other settings; treatment interventions and harm reduction approaches; attempts to control the supply of illicit drugs, including drug interdiction and law enforcement; decriminalization and penal approaches; and control of the legal market through prescription drug regimes. The final chapters discuss the trend toward legalization of some psychoactive substances in different parts of the world and describe the need for a new approach to drug policy that is evidence-based, realistic, and coordinated. The evidence reviewed in this book suggests that an integrated and balanced approach to evidence-informed drug policy is more likely to benefit the public good than are uncoordinated efforts to reduce drug supply and demand.
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| 14. |
- Babor, Thomas F., et al.
(författare)
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Drug Policy and the Public Good : a summary of the second edition
- 2019
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Ingår i: Addiction. - : Wiley. - 0965-2140 .- 1360-0443. ; 114:11, s. 1941-1950
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Tidskriftsartikel (refereegranskat)abstract
- The second edition of Drug Policy and the Public Good presents up-to-date evidence relating to the development of drug policy at local, national and international levels. The book explores both illicit drug use and non-medical use of prescription medications from a public health perspective. The core of the book is a critical review of the scientific evidence in five areas of drug policy: (1) primary prevention programs in schools and other settings; (2) treatment interventions and harm reduction approaches; (3) attempts to control the supply of illicit drugs, including drug interdiction and law enforcement; (4) penal approaches, decriminalization and other alternatives; and (5) control of the legal market through prescription drug regimens. It also discusses the trend towards legalization of some psychoactive substances in some countries and the need for a new approach to drug policy that is evidence-based, realistic and coordinated. The accumulated evidence provides important information about effective and ineffective policies. Shifting the emphasis towards a public health approach should reduce the extent of illicit drug use, prevent the escalation of new epidemics and avoid the unintended consequences arising from the marginalization of drug users through severe criminal penalties.
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| 15. |
- Blomqvist, P, et al.
(författare)
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Brain tumours in Sweden 1996 : care and costs.
- 2000
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Ingår i: Journal of Neurology, Neurosurgery and Psychiatry. - : BMJ. - 0022-3050 .- 1468-330X. ; 69, s. 792-798
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Tidskriftsartikel (refereegranskat)
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| 16. |
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| 17. |
- Carlsson, Maria E., 1958-, et al.
(författare)
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Qualitative analysis of the questions raised by patients with gynecologic cancers and their relatives in an educational support group.
- 1999
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Ingår i: Journal of Cancer Education. - 0885-8195 .- 1543-0154. ; 14:1, s. 41-46
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND People's knowledge of cancer is generally inadequate to help them cope with a diagnosis of cancer. Educational support groups may allow cancer patients to receive information they want that is normally not covered in the individual clinical encounter. It was desired to identify the content of such information as reflected in the questions asked by cancer patients and their relatives in such support groups. METHOD The 329 questions asked by 41 patients and 11 of their relatives in 40 group sessions were analyzed and categorized. RESULTS The categories found are described. Almost 100 questions could be allocated to the category "the illness," of which the most common was, "Is cancer hereditary?" The questions made it clear that the patients had a wish and a need to understand cancer. CONCLUSION An educational support group provides a complement to, and not a substitute for, the clinical provision of medical information.
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| 18. |
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| 19. |
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| 20. |
- Carlsson, Maria, 1958-, et al.
(författare)
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How patients with gynecological cancer experience the information process
- 1998
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Ingår i: Journal of Psychosomatic Obstetrics and Gynaecology. - : Informa Healthcare. - 0167-482X .- 1743-8942. ; 19:4, s. 192-201
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Tidskriftsartikel (refereegranskat)abstract
- This qualitative study was designed to explore the kind of experiences women with a diagnosis of gynecological cancer have with regard to information given during their illness and how it could be improved. Data were collected through a semistructured interview which focused on the 24 women's experiences of the information given. The interviews were tape-recorded and transcribed verbatim for each participant, and analysed using a content analysis. Two main themes were revealed: to actively address questions, and the right to receive honest information. The results also include a short description on how information was offered, the patients' opinion of it and how the patients had sought information for themselves. When patients address questions they want honest answers. Some effort should also be made to identify patients who do not want information. If it is in accordance with the patient's and next-of-kin's wishes, efforts should be made to provide information at times when both can participate. Information given jointly to the patient and her family lessens the burden for the patient. In Sweden today, as a result of recent political decisions, caregivers must also consider the need to discuss economic issues.
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| 21. |
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| 22. |
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| 23. |
- Carlsson, Maria, 1958-, et al.
(författare)
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Treatment modality affects long-term quality of life in gynaecological cancer.
- 2000
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Ingår i: Anticancer Research. - : The International Institute of Anticancer Research. - 0250-7005 .- 1791-7530. ; 20:1B, s. 563-568
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Tidskriftsartikel (refereegranskat)abstract
- In order to survey the side effects after cancer treatment, quality of life data were collected from females in clinical remission. MATERIALS AND METHODS The study was cross-sectional; every patient that visited the outpatient clinic during a period of three months was asked to anonymously complete the EORTC QLQ-C30 questionnaire and five additional specific questions related to gynaecological cancer. RESULTS In total, 235 patients (90%) returned the questionnaire. In general, both the levels of functioning and symptomatology were time-dependent. Patients with short treatment-free intervals reported more problems than the others. When using treatment modality as an independent variable in the statistical calculations, a treatment-related effect on functioning and symptomatology was demonstrated (p < 0.05 to p < 0.001). Patients previously treated with chemotherapy had poorer role- and cognitive functioning and more problems with fatigue, nausea, vomiting, dyspnoea, constipation and financial problems, compared with those not treated with chemotherapy (p < 0.05 to p < 0.01). Those patients who had been treated with external radiotherapy and/or brachytherapy had significantly more problems with flatulence and diarrhoea (p < 0.05 to p < 0.001). In conclusion, patients who underwent treatment for gynaecological cancer reported long-term side effects also many years after finishing treatment. The problems where related to treatment modality which should be considered, especially when planning adjuvant treatment.
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| 24. |
- Cavalli-Björkman, Nina, 1970-, et al.
(författare)
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Equal cancer treatment regardless of education level and family support? : A qualitative study of oncologists’ decision-making
- 2012
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 2:4, s. e001248-
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Treatment gradients by socioeconomic status have been observed within cancer care in several countries. The objective of this study was to explore whether patients' educational level and social network influence oncologists' clinical decision-making. Design: Semi-structured interviews on factors considered when deciding on treatment for cancer patients. Interviews were transcribed and analysed using inductive qualitative content analysis. Setting: Oncologists in Swedish university-and non-university hospitals were interviewed in their respective places of work. Participants: Twenty Swedish clinical oncologists selected through maximum-variation sampling. Primary and secondary outcome measures: Elements which influence oncologists' decision-making process were explored with focus on educational level and patients' social support systems. Results: Oncologists consciously used less combination chemotherapy for patients living alone, fearing treatment toxicity. Highly educated patients were considered as well-read, demanding and sometimes difficult to reason with. Patients with higher education, those very keen to have treatment and persuasive relatives were considered as challenges for the oncologist. Having large groups of relatives in a room made doctors feel outnumbered. A desire to please patients and relatives was posed as the main reason for giving in to patients' demands, even when this resulted in treatment with limited efficacy. Conclusions: Oncologists tailor treatment for patients living alone to avoid harmful side-effects. Many find patients' demands difficult to handle and this may result in strong socioeconomic groups being over-treated.
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| 25. |
- Cronfalk, Berit, et al.
(författare)
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Inner power, physical strength and existential well-being in daily life: relatives' experiences of receiving soft tissue massage in palliative home care
- 2009
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 1365-2702 .- 0962-1067. ; 18:15, s. 2225-2233
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Tidskriftsartikel (refereegranskat)abstract
- Aim and objectives. This article explores relatives' experiences of receiving soft tissue massage as a support supplement while caring for a dying family member at home. Background. In palliative home care, relatives play an important role as carers to seriously ill and dying family members. To improve their quality of life, different support strategies are of importance. Complementary methods, such as soft tissue massage have become an appreciated supplement for these patients. However, only few studies focus on relatives experiences of receiving soft tissue massage as a supplemental support. Design. Qualitative design Method. Nineteen relatives received soft tissue massage (hand or foot) nine times (25 minutes) in their homes. Open-ended semi-structured tape-recorded interviews were conducted once per relative after the nine times of massage, using qualitative content analysis. Results. Soft tissue massage gave the relatives' feelings of 'being cared for', 'body vitality' and 'peace of mind'. For a while, they put worries of daily life aside as they just experienced 'being'. During massage, it became apparent that body and mind is constituted of an indestructible completeness. The overarching theme was 'inner power, physical strength and existential well-being in their daily lives'. Conclusion. All relatives experienced soft tissue massage positively, although they were under considerable stress. Soft tissue massage could be an option to comfort and support relatives in palliative home care. Relevance to clinical practice. In palliative nursing care, soft tissue massage could present a worthy supplement in supporting caring relatives.
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| 26. |
- Cronfalk, Berit, et al.
(författare)
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The existential experiences of receiving soft tissue massage in palliative home care-an intervention
- 2009
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 17:9, s. 1203-1211
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Tidskriftsartikel (refereegranskat)abstract
- Background Soft tissue massage is currently used in palliative care for the relief of anxiety and pain. Only few studies have focused on patients' deeper experience of receiving the massage. Aim The purpose of this study was to explore how patients with cancer in palliative home care experienced soft tissue massage. Materials and methods Twenty-two patients received soft tissue massage (hand or foot) nine times over a period of 2 weeks. Each session lasted for 25 min. Following the last massage session, a qualitative interview was conducted. The analysis was performed using a hermeneutic approach. Findings Soft tissue massage generated feelings of existential respite with perceptions of being released from illness for a while. Two categories constituted the basis of the experiences: (1) "an experience of thoughtful attention" and (2) "a sensation of complete tranquility" resulting in the overarching theme "A time of existential respite." Conclusion The patients experienced the massage to give meaning and to be important as it generated feelings of an inner respite. Relevance to clinical practice Soft tissue massage appears to be an appreciated source of support to dying patients in palliative home care. The method is easy to comprehend and relatively short (25 min) which may imply that it is a suitable complement in nursing care for this patient group.
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| 27. |
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| 28. |
- Friedrichsen, Maria, et al.
(författare)
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Breaking bad news in the transition from curative to palliative cancer care : patient's view of the doctor giving the information.
- 2000
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Ingår i: Supportive Care in Cancer. - 0941-4355 .- 1433-7339. ; 8:6, s. 472-478
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Tidskriftsartikel (refereegranskat)abstract
- In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Sire subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.
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| 29. |
- Friedrichsen, Maria, et al.
(författare)
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Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
- 2002
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 16:4, s. 323-330
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cancer patients' interpretations of the meaning of words used when given bad news are not well studied in medical settings. The aim of this study was to ascertain what significance verbal expressions had for cancer patients when they were given information about ending active tumour treatment, and what message they felt they received. METHODS: Tape-recorded semi-structured interviews were performed and analysed using a qualitative phenomenographical approach. RESULTS: Thirty patients with incurable cancer admitted to hospital-based home care unit in Sweden participated. Three main categories about the significance of words emerged: 1) words could indicate indirect warnings as being forewarnings, evasive or ambiguous; 2) words could also be perceived as emotionally trying, as threats or abandoning; 3) other words were fortifying and strengthened the patient in this situation. The overall message given during the information could be interpreted differently: either focused on treatment, on quality of life, or on threat and death. CONCLUSION: The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.
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| 30. |
- Friedrichsen, Maria, et al.
(författare)
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Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
- 2000
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Ingår i: Acta Oncologica. - : Informa UK Limited. - 0001-6381 .- 0284-186X .- 1651-226X. ; 39:8, s. 919-925
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Tidskriftsartikel (refereegranskat)abstract
- The focus of most studies on informational needs has been on primary cancer diagnosis. The aim of this study was to explore how cancer patients in a palliative care setting perceived their own participation and resources after receiving information about the discontinuation of active tumour treatment. Thirty cancer patients admitted to a hospital-based home-care unit participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. The patients described their own participation as being either verbally passive or active, in order to receive more information or to avoid information. Furthermore, previous knowledge, at different levels, was described as important: 1) Unsuspecting naive, 2) apprehensive suspicious, 3) well prepared. Patients' own resources included a sense of wellbeing, a sense of security and individual strength. In conclusion, patients' previous knowledge and own resources are important components for their capacity to take part in the dialogue when receiving information.
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| 31. |
- Friedrichsen, Maria, et al.
(författare)
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Cancer patients' perceptions of their participation and own resources after receiving information about discontinuation of active tumour treatment.
- 2000
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 39:8, s. 919-925
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Tidskriftsartikel (refereegranskat)abstract
- The focus of most studies on informational needs has been on primary cancer diagnosis. The aim of this study was to explore how cancer patients in a palliative care setting perceived their own participation and resources after receiving information about the discontinuation of active tumour treatment. Thirty cancer patients admitted to a hospital-based home-care unit participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. The patients described their own participation as being either verbally passive or active, in order to receive more information or to avoid information. Furthermore, previous knowledge, at different levels, was described as important: 1) Unsuspecting naive, 2) apprehensive suspicious, 3) well prepared. Patients’ own resources included a sense of wellbeing, a sense of security and individual strength. In conclusion, patients’ previous knowledge and own resources are important components for their capacity to take part in the dialogue when receiving information.
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| 32. |
- Friedrichsen, Maria, 1966-
(författare)
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Crossing the border : Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase
- 2002
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Information in the transition to the late palliative phase is not a well-studied area, especially not from the perspective of patients and family members. The aim of this thesis was to describe how cancer patients, family members and physicians experience information during the transition from a curative or early palliative phase to a late palliative phase, i.e. when tumour-specific treatment could not be offered. Cancer patients (n=30) admitted to palliative hospital based home care, family members (n=20) of cancer patients, and physicians (n=30) working with cancer patients in different settings were included in order to create a maximum variation sampling.Tape-recorded, semi-structured interviews and qualitative, phenomenographic analyses were done in all the studies.Patients described the physician as an expert (study I), an important person during this event, despite characterising him/her in different ways ranging from the empathetic professional to the rough and ready expert. Their relationship with the physician was also stressed. Their own resources, i.e. a sense of well being, a sense of security and individual strength, and their previous knowledge, were important components regarding their ability to take part in the communication (study II). Patients interpret words and phrases carefully and can perceive them as forewarnings, as being emotionally trying, and as fortifying and strengthening (study III). The overall message could be interpreted as either focused on quality if life, on treatment or on death and threat.Family members wanted to protect the patient during this period and could be very active and prominent in their protective role (study IV). However, other family members described themselves as being in the background more or less involuntarily. Family members also felt that there were expectations regarding their behaviour, either that they should take over in terms of communication, or that they should restrict their participation. When giving information, the physicians had a clear goal - to make the patient understand while being as considerate toward the patient as possible. However, the strategies for reaching this goal differed and included: explaining and convincing, softening the impact and vaguely suggesting, preparing and adapting. Some physicians had a main strategy while others mixed different strategies depending on the context.The experience of receiving and providing information about discontinuing tumour specific treatment is like crossing a border, where patients experience the behaviour of the physician and the words they express of great significance. Family members assume the role of protectors. Physicians use different strategies in order to help patients cross the border.
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| 33. |
- Friedrichsen, Maria, et al.
(författare)
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Doctors' strategies when breaking bad news to terminally ill cancer patients
- 2003
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 6:4, s. 565-574
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Tidskriftsartikel (refereegranskat)abstract
- Breaking bad news to patients with a terminal disease is a difficult task for physicians. The aim of this study was to study how doctors perceive their strategies when giving information to cancer patients about discontinuing active tumour treatment. Thirty doctors with different demographic characteristics working with patients with cancer in Sweden participated. Semistructured interviews were conducted and analyzed using a qualitative phenomenographic method. The goal when giving this information was described as making the patient understands while being as considerate as possible. However, the strategies for reaching this goal were different: (1) explaining and convincing information, (i.e., giving a long explanation about why treatment has to be discontinued); (2) softening the impact of the information, with the doctor recommending discontinuation of treatment; (3) and preparing either the patient or the physician himself/herself for the information; (4) adapting or tailoring the information to the patient, with the doctor actively seeking knowledge about the patient in order to be able to adapt the information to the patient's level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patient's reactions and questions (i.e., letting the patient take an active part). When giving information, the doctors' goal was to make patients understand, but the strategies differed depending on the context.
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| 34. |
- Friedrichsen, Maria, et al.
(författare)
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Receiving bad news : experiences of family members.
- 2001
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Ingår i: Journal of Palliative Care. - Montreal, Canada : SAGE Publications. - 0825-8597 .- 2369-5293. ; 17:4, s. 241-247
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Tidskriftsartikel (refereegranskat)abstract
- Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context. Methods: Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method. Results: Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role. Conclusion: This study has revealed possible explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.
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| 35. |
- Fröjd, Camilla, 1967-
(författare)
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Cancer Patients’ Satisfaction with Doctors’ Care : Consequences and Contributing Conditions
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The main aims were to: explore whether there is a relation between doctors’ ability to identify patients’ worry and wish for information and self-efficacy with regard to communicating with patients about difficult matters; describe which cues doctors consider when estimating patients’ worry and wish for information, and investigate whether there is a relation between patients’ satisfaction with doctors’ care and patients’ psychosocial function. Eleven doctors and 69 patients (of which 36 patients participated in the longitudinal study) with carcinoid tumours participated. Doctors’ self-efficacy, and ability to identify patients’ worry/wish for information were investigated at patients’ first admission. Doctors were interviewed about which cues they considered when estimating patients worry/wish for information. Patients’ satisfaction with care (CASC SF 4.0) and psychosocial function (EORTC QLQ-C30, HADS) were measured longitudinally, during the first year after diagnosis. Doctors reported higher self-efficacy when showing good ability to identify patients’ wish for information, than when showing less good ability, overestimated patients’ worry and underestimated patients’ wish for information. Doctors considered patients’ verbal behaviour and body language together with knowledge and experience when estimating patients worry and wish for information. Patients who met doctors showing good ability to identify their wish for information, reported a higher cognitive function than patients who met doctors showing less good ability. At all assessments patients expressed high satisfaction with doctor’ care and patients’ satisfaction did not change over time. Patients’ satisfaction with doctors’ care were related to their psychosocial function shortly after the first three admissions to specialist care. Patients with carcinoid tumours in some respects reported a worse HRQoL than the general Swedish population. Fatigue, diarrhoea, limited possibilities to work/pursue daily activities, and worry that the illness will get worse were among the most prevalent, and worst, aspects of disease- and treatment related distress.
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| 36. |
- Fürst, Per, et al.
(författare)
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Advanced cancer and concomitant dementia : access to specialized palliative care, emergency room, hospital care, and place of death
- 2022
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Ingår i: Acta Oncologica. - 0284-186X. ; 61:7, s. 874-880
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Tidskriftsartikel (refereegranskat)abstract
- Background: Dementia and advanced cancer are complex, life-limiting conditions that benefit from specialized palliative care (SPC) interventions at the end of life. The objective was to study possible differences in care for patients with concomitant advanced cancer and dementia (CA-DEM) or cancer only (CA) regarding access to SPC, acute hospital care, and place of death. Materials and methods: A retrospective observational registry study on health care consumption data from the Stockholm Regional Council involving logistic regression analyses of age, sex, living arrangements, comorbidities, dementia diagnosis, and socio-economic status. Results: Of the 12,667 persons aged ≥65 years who died from advanced cancer between 2015 and 2019, 605 had concomitant dementia. Of these, 76% of patients with CA and 42% of patients with CA-DEM had access to SPC (p<.0001). There were more admissions to palliative care for persons not living in nursing homes (p<.0001), women (p<.0001), socioeconomically privileged patients (p<.05), those with fewer comorbidities (p<.0001), and younger patients (<85 years) (p<.0001). Access to SPC reduced ER visits, hospitalizations, and acute hospital deaths for CA, whereas access to SPC only reduced hospital deaths in the CA-DEM group. Conclusions: The probability of being admitted to SPC was lower in cancer patients with known dementia. Access to SPC reduced emergency room visits and acute admissions to hospitals for the whole group, and hospital deaths both for CA and CA-DEM.
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| 37. |
- Granstam Björneklett, Helena, et al.
(författare)
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A randomised controlled trial of support group intervention after breast cancer treatment : Results on anxiety and depression
- 2012
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 51:2, s. 198-207
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundPrevious studies have demonstrated that between 20 and 30% of women treated for breast cancer have measurable signs of anxiety and depression compared with 6% in a population of healthy women. Depression has been proposed as a predictive factor for recurrence and survival. The aim of the present study was to evaluate if psychosocial support intervention could influence anxiety and depression during the first year after diagnosis.Material and methodsNewly diagnosed breast cancer patients were randomised between April 2002 and November 2007 and stratified by adjuvant chemotherapy. Of 382 eligible patients, 191 + 191 patients were randomised to intervention group or control group, respectively. Control patients were subjected to standard follow-up routines. The Intervention group had support intervention at the Foundation Lustgarden Malardalen. The rehabilitation lasted one week on a residential basis followed by four days of follow-up two months later. We used the Swedish version of the HAD scale with a cut-off value greater than 10 for clinical symptoms of depression and anxiety.ResultsSupport group intervention lowered anxiety over time (p < 0.001) but depression was unaffected (p = 0.610).ConclusionThis prospective randomised trial of support group intervention in a large homogenous group of breast cancer women showed a statistically significant effect on lowering anxiety over time. No statistically significant effect of intervention could be seen on depression.
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| 38. |
- Granstam Björneklett, Helena, et al.
(författare)
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A randomized controlled trial of a support group intervention on the quality of life and fatigue in women after primary treatment for early breast cancer
- 2012
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 20:12, s. 3325-3334
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:When diagnosed with breast cancer, most women's lives change as well as their perspectives on and appreciation of life. The aim of the present study was to evaluate whether psychosocial support intervention could influence health-related quality of life (HRQOL) and fatigue during the first year after diagnosis.MATERIAL AND METHODS:Of 382 patients with newly diagnosed breast cancer, 191 patients were randomized to an intervention group and 191 patients were randomized to a routine control group. The intervention group received support intervention that lasted 1 week on a residential basis, followed by 4 days of follow-up 2 months later. The support intervention included informative educational parts, relaxation training, mental visualization, and nonverbal communication. HRQOL was measured using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-BR23 questionnaires and fatigue with the Norwegian version of the fatigue scale at baseline and at 2, 6, and 12 months after intervention.RESULT:There was a time-dependent improvement in both functional and symptom scales between baseline and 12 months as measured by the EORTC QLQ-C30 and BR23 questionnaires and there was a decrease in fatigue between baseline and after 2 months with further improvement up to 12 months in both groups, but there were no differences between the intervention and control groups at any point in time.CONCLUSION:HRQOL improves and symptoms of fatigue decrease over time, but we could not see any additional effect from the rehabilitation program in this setting.
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| 39. |
- Granstam Björneklett, Helena, 1962-, et al.
(författare)
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A randomized controlled trial of support group intervention after breast cancer treatment : Results on sick leave, health care utilization and health economy
- 2013
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 52:1, s. 38-47
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundMore than 50% of breast cancer patients are diagnosed before the age of 65. Returning to work after treatment is, therefore, of interest for both the individual and society. The aim was to study the effect of support group intervention on sick leave and health care utilization in economic terms.Material and MethodsOf 382 patients with newly diagnosed breast cancer, 191 + 191 patients were randomized to an intervention group or to a routine control group respectively. The intervention group received support intervention on a residential basis for one week, followed by four days of follow-up two months later. The support intervention included informative-educational sections, relaxation training, mental visualization and non-verbal communication. Patients answered a questionnaire at baseline, 2, 6 and 12 months about sick leave and health care utilization.ResultThere was a trend towards longer sick leave and more health care utilization in the intervention group. The difference in total costs was statistically significantly higher in the intervention group after 12 months (p= 0.0036).Conclusion Costs to society were not reduced with intervention in its present form.
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| 40. |
- Granstam Björneklett, Helena, et al.
(författare)
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Long-term follow-up of a randomized study of support group intervention in women with primary breast cancer
- 2013
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Ingår i: Journal of Psychosomatic Research. - : Elsevier BV. - 0022-3999 .- 1879-1360. ; 74:4, s. 346-353
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Tidskriftsartikel (refereegranskat)abstract
- Background:Despite a fairly good prognosis, many breast-cancer patients suffer from symptoms such as anxiety, depression and fatigue, which may affect health-related quality of life and may persist for several years. The aim of the present study was to perform a long-term follow-up of a randomized study of support group intervention in women after primary breast cancer treatment.Materials and methods:Three hundred and eighty two women with primary breast cancer were randomized to support group intervention or control group, 181 in each group. Women in the intervention group participated in 1 week of intervention followed by 4 days of follow-up 2 months later. This is a long-term follow-up undertaken, in average, 6.5. years after randomization. Patients answered the questionnaires the European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire (EORTC QLQ-C30) and the Breast Cancer Module questionnaire (BR23), the Hospital Anxiety and Depression Scale (HAD) and the Norwegian version of the fatigue scale (FQ).Results: After adjusting for treatment with chemotherapy, age, marriage, education and children at home, there was a significant improvement in physical, mental and total fatigue (FQ), cognitive function, body image and future perspective (EORTC QLQ C30 and BR23) in the intervention group compared with controls. The proportion of women affected by high anxiety and depression scores were not significantly different between the groups.Conclusion:Support intervention significantly improved cognitive function, body image, future perspective and fatigue, compared with to the findings in the control group.
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| 41. |
- Hedman, Christel, et al.
(författare)
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Symptom management and support in dying patients with cancer and coronavirus disease-19 : a register-based study
- 2023
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Ingår i: Journal of Palliative Care. - : Sage Publications. - 0825-8597 .- 2369-5293. ; 38:3, s. 261-267
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care.Methods: Patients with both cancer and COVID-19 who died in hospitals (n = 430) and within SPC (n = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death.Results: Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; p <.001), while pain was less common (65% and 78%, respectively; p <.001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (p =.014 to p <.001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (p <.001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (p <.001).Conclusion: More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.
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| 42. |
- Heedman, Per Anders, et al.
(författare)
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Pain and pain alleviation in hospital-based home care : demographic, biological and treatment factors
- 2003
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 11:1, s. 35-40
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to contrast two opposed groups, namely palliative cancer patients who were suffering significant pain (VASgreater than or equal to4) and palliative cancer patients with no pain (VAS = 0) in hospital-based home care and, retrospectively, to study possible differences in relation to demographic, biological and treatment factors. The ESAS (Edmonton Symptom Assessment Scale) was used to assess 191 palliative cancer patients on admission and after I week of home care. Fifty-two (27%) had pain (mean 5.5+/-1.7) and 72 (38%) had no pain on admission [the middle group, (n=67) had VAS 1-3]. Activity was more severely affected (5.4 vs 4.2, p<0.01) and nausea less well controlled in patients with pain (2.3 vs 0.7, P<0.0001). Pain was associated with the diagnosis of prostate cancer (P<0.01) and the presence of skeletal metastases (P<0.001), whereas pain-free patients, with or without analgesics, more often had colorectal cancer (P<.01) or melanoma (P<0.05). The medication profiles differed between the two groups: 22 (42%) of the 52 patients with pain were on step 3 of the WHO analgesic ladder and 24 of 51 (47%) were receiving antiemetics, whereas 42 (58%) of the 72 patients with no current pain had no analgesic prescribed and only 25% of them had antiemetics prescribed, indicating biological differences. If pain was present on admission a pain analysis was formally documented in 23 (44%) of the 52 cases and the medication was changed in 27 of the 52 (52%). The patients improved after I week (5.4+/-1.6 vs 3.9+/-2.3, P<0.001), and the improvement was significant even when a pain analysis was not documented or when medication was not changed. In conclusion, the results of this study indicate biological differences in pain alleviation and the need for a more structured way of working.
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| 43. |
- Heedman, Per-Anders, et al.
(författare)
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Symptom assessment in advanced palliative home care for cancer patients using the ESAS : Clinical aspects
- 2001
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Ingår i: Anticancer Research. - 0250-7005 .- 1791-7530. ; 21:6 A, s. 4077-4082
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Tidskriftsartikel (refereegranskat)abstract
- Four hundred and thirty-one cancer patients were assessed with the ESAS and a VAS-QoL at admission to Hospital-based home care (HBHC) and subsequently. Results: Pain and nausea were well-controlled (mean 2.5 and 1.8) whereas patients were less satisfied with appetite, activity and sense of well-being. Dyspnoea and anxiety (lung cancer, p<0.001 and p<0.01) and pain (prostate cancer, p<0.01), were related to diagnosis while activity, drowsiness, appetite and well-being to survival (p<0.05 to p<0.001). The correlations between individual symptoms and well-being were low (0.2-0.5), whereas the correlation between well-being and the Symptom Distress Score (SDS) was 0.76. "Well-being" was a better word to use than QoL. Discussion: ESAS is useful in HBHC and data show that symptoms other than merely pain and nausea are of importance. As the global measurement (one VAS) of well-being has a high correlation with SDS, this single measurement may be clinically adequate for quality assurance of symptom control in dying cancer patients.
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| 44. |
- Henoch, Ingela, et al.
(författare)
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Early Predictors of Mortality in Patients with COPD, in Relation to Respiratory and Non-Respiratory Causes of Death - A National Register Study
- 2020
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Ingår i: International journal of chronic obstructive pulmonary disease. - 1178-2005. ; 15, s. 1495-1505
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Tidskriftsartikel (refereegranskat)abstract
- Background: Both single factors and composite measures have been suggested to predict mortality in patients with chronic obstructive pulmonary disease (COPD) and there is a need to analyze the relative importance of each variable. Objective: To explore the predictors of mortality for patients with COPD in relation to respiratory, cardiac, and malignant causes, as well as all causes of death. Methods: After merging the Swedish Respiratory Tract Register (SRTR) and the Swedish Cause of Death Register, patients with respiratory, cardiac, and other causes of death were identified. Demographic and clinical variables from the deceased patients' first registration with the SRTR were compared. Three univariable and multivariable Cox proportional hazards regression analyses were conducted for different causes of death, with time from first registration to either death or a fixed end date as dependent variable, and variables regarding demographics, respiration, and comorbidities as independent variables. Results: In the multivariable Cox models, mortality for patients with all causes of death was predicted by older age 1.79 (CI 1.41, 2.27), lower percentage of predicted forced expiratory volume in 1 second (FEV1 %) 0.99 (CI 0.98, 0.99), lower saturation 0.92 (CI 0.86, 0.97), worse dyspnea 1.48 (CI 1.26, 1.74) (p<0.002 to p<0.001), less exercise 0.91 (CI 0.85, 0.98), and heart disease 1.53 (CI 1.06, 2.19) (both p<0.05). Mortality for patients with respiratory causes was predicted by higher age 1.67 (CI 1.05, 2.65) (p<0.05), lower FEV1% 0.98 (CI 0.97, 0.99), worse dyspnea 2.05 (CI 1.45, 2.90), and a higher number of exacerbations 1.27 (CI 1.11, 1.45) (p<0.001 in all comparisons). For patients with cardiac causes of death, mortality was predicted by lower FEV1% 0.99 (CI 0.98, 0.99) (p=0.001) and lower saturation 0.82 (CI 0.76, 0.89) (p<0.001), older age 1.46 (CI 1.02, 2.09) (p<0.05), and presence of heart disease at first registration 2.06 (CI 1.13, 3.73) (p<0.05). Conclusion: Obstruction predicted mortality in all models and dyspnea in two models and needs to be addressed. Comorbidity with heart disease could further worsen the COPD patient's prognosis and should be treated by a multidisciplinary team of professional specialists.
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| 45. |
- Jakobsson Larsson, Birgitta, 1965-
(författare)
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Quality of life, Coping and need for Support during the ALS disease trajectory
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to investigate quality of life, coping and emotional distress (i.e. anxiety and depression) among newly diagnosed ALS patients. An additional aim was also to investigate relatives’ experiences of the care for the patient and the support they received for themselves during the disease progression.The most nominated areas of importance for the patient’s overall QoL were family, friends and own physical health. Most patients rated their QoL as good, which did not change at subsequent measurement, despite their physical function having changed for the worse during disease progression. Some patients had symptoms of clinical anxiety and depression during the first year after diagnosis. The total quality of life score did not correlate with physical function but with depression early on after diagnosis. Most patients used support and independence as strategies to cope with the disease during the first six months after diagnosis. There were few changes early on after the diagnosis, and the patients used several different strategies. The results show that the use of coping strategies remained stable over time. Both physical function and emotional distress correlated significant with different coping strategies, with some variation during the disease progression. Relatives experienced the care of their loved one as positive and based on the patient’s needs and desires. The treatment, knowledge, support and help from the staff were important for the relatives’ feeling of security. Different factors influence the use of support for themselves. The relatives did not think of their own needs, but their focus was rather on the patient.The results of the thesis highlight the importance of providing support both to patients and their relatives during the disease progression. With early and regular evaluation on quality of life, coping and emotional well-being among the patients, the health professionals may be able to support the patients based on their specific needs, which probably will increase their quality of life.
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| 46. |
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| 47. |
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| 48. |
- Karlsson, Marit, et al.
(författare)
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Attitudes toward euthanasia among Swedish medical students
- 2007
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 21:7, s. 615-22
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Tidskriftsartikel (refereegranskat)abstract
- Attitudes toward euthanasia differ between individuals and populations, and in many studies the medical profession is more reluctant than the general public. Our goal was to explore medical students' attitude toward euthanasia. A questionnaire containing open-ended questions was answered anonymously by 165 first- and fifth-year medical students. Data were analysed using qualitative content analysis with no predetermined categories. The students' arguments opposing euthanasia were based on opinions of 1. euthanasia being morally wrong, 2. fear of possible negative effects on society, 3. euthanasia causing strain on physicians and 4. doubts about the true meaning of requests of euthanasia from patients. Arguments supporting euthanasia were based on 1. patients' autonomy and 2. the relief of suffering, which could be caused by severe illnesses, reduced integrity, hopelessness, social factors and old age. There are several contradictions in the students' arguments and the results indicate a possible need for education focusing on the possibility of symptom control in palliative care and patients' perceived quality of life. Palliative Medicine 2007; 21 : 615—622
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| 49. |
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| 50. |
- Karlsson, Marit, et al.
(författare)
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Dying cancer patients' own opinions on euthanasia : An expression of autonomy? A qualitative study.
- 2012
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Ingår i: Palliative Medicine. - London, UK : Sage Publications Ltd.. - 0269-2163 .- 1477-030X. ; 26:1, s. 34-42
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. METHOD: Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. RESULTS: The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust. CONCLUSIONS: Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.
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