Anna Milberg

Next of kin’s experience of powerlessness and helplessness in palliative home care

Goals of workPowerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications.Patients and methodsThe study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3–9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis.Main resultsThirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kin’s perception of the patient’s suffering, of the patient’s fading away and the next of kin’s own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness.ConclusionsThe main findings provide tools for the practitioner to identify situations contributing to next of kin’s sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans’ search for action.

Dying cancer patients’ experiences of powerlessness and helplessness

Goals of workExperiences of powerlessness and helplessness are closely linked to incurable diseases but seldom studied in patients with disseminated cancer. The aim is to explore the perception, experiences and significance of powerlessness and helplessness, to study triggering factors and to make quantifications.Materials and methodsOne hundred three patients, enrolled in four different palliative home-care settings, completed a questionnaire with both Likert-type questions and open-ended questions. The response rate was 58%, and background data was reported as frequencies, whereas the main material was analysed using a qualitative content analysis.Main resultsImpending death, symptoms, loss of control and autonomy, ignorance, isolation and uncertainty constituted the basis for powerlessness and helplessness, but each factor was reinforced by the occurrence of suddenness, high intensity and/or lengthiness. In total, 65% reported definite experiences of powerlessness and helplessness. These feelings also held a deeper meaning, involving aspects such as existential loneliness and hopelessness. They were ultimately caused by an incapacity to control feelings and cope with the situation related to the impending death. The results are discussed in relation to Cassel’s theory of suffering and existential psychology.

Advanced Palliative Home Care: Next-of-Kin's Perspective

GOALS (1). To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2). to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size. SUBJECTS AND METHODS Four to 7 months after the patients death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed. MAIN RESULTS Service aspects and comfort emerged as main categories. The staffs competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings. CONCLUSIONS Next-of-kin incorporate service aspects and aspects relating to the patients and familys comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

What is a ‘secure base’ when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care

Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a ‘secure base’ (a central concept within the theory).

Met and unmet needs in hospital-based home care: qualitative evaluation through open-ended questions:

Met and unmet needs in hospital-based home care : qualitative evaluation through open-ended questions.

Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective

OBJECTIVE Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions. METHOD Both family members during ongoing APHC and family members 3-9 months after the patients death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis. RESULTS Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security. SIGNIFICANCE OF RESULTS The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

Dying cancer patients’ own opinions on euthanasia: An expression of autonomy? A qualitative study

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.

Dying with dignity according to Swedish medical students

Goal of workTo die with dignity is an important but ambiguous concept, and it is used in contradictory contexts, both for the promotion of palliative care and as an argument for euthanasia. Our goal was to explore medical students’ definition of a dignified death.Patients and methodsA questionnaire containing open-ended questions was answered anonymously by 165 first- and fifth-year medical students. The data were analysed using qualitative content analysis with no predetermined categories.Main resultsThe students’ descriptions of a dignified death resulted in five categories of death: (1) without suffering, (2) with limited medical interventions, (3) with a sense of security, which implied a safe environment nursed by professional staff, (4) with autonomy, respect for the individual and empowerment to the patient and (5) with acceptance. These findings show similarity to the established concepts of a good death, as well as the view of a dignified death by terminally ill patients.ConclusionsThe data suggest that the students perceive that the medical system is over-treating patients and sometimes causing harm to dying patients. The results reveal a potential misunderstanding and contradiction relating to death without suffering and the use of necessary palliative interventions. These findings are important when planning education as regards palliative care and dignified death.

Long-Term Evaluation of the Ambulatory Geriatric Assessment: A Frailty Intervention Trial (AGe-FIT): Clinical Outcomes and Total Costs After 36 Months

OBJECTIVE To compare the effects of care based on comprehensive geriatric assessment (CGA) as a complement to usual care in an outpatient setting with those of usual care alone. The assessment was performed 36 months after study inclusion. DESIGN Randomized, controlled, assessor-blinded, single-center trial. SETTING A geriatric ambulatory unit in a municipality in the southeast of Sweden. PARTICIPANTS Community-dwelling individuals aged ≥ 75 years who had received inpatient hospital care 3 or more times in the past 12 months and had 3 or more concomitant medical diagnoses were eligible for study inclusion. Participants were randomized to the intervention group (IG) or control group (CG). INTERVENTION Participants in the IG received CGA-based care for 24 to 31 months at the geriatric ambulatory unit in addition to usual care. OUTCOME MEASURES Mortality, transfer to nursing home, days in hospital, and total costs of health and social care after 36 months. RESULTS Mean age (SD) of participants was 82.5 (4.9) years. Participants in the IG (n = 208) lived 69 days longer than did those in the CG (n = 174); 27.9% (n = 58) of participants in the IG and 38.5% (n = 67) in the CG died (hazard ratio 1.49, 95% confidence interval 1.05-2.12, P = .026). The mean number of inpatient days was lower in the IG (15.1 [SD 18.4]) than in the CG (21.0 [SD 25.0], P = .01). Mean overall costs during the 36-month period did not differ between the IG and CG (USD 71,905 [SD 85,560] and USD 65,626 [SD 66,338], P = .43). CONCLUSIONS CGA-based care resulted in longer survival and fewer days in hospital, without significantly higher cost, at 3 years after baseline. These findings add to the evidence of CGAs superiority over usual care in outpatient settings. As CGA-based care leads to important positive outcomes, this method should be used more extensively in the treatment of older people to meet their needs.

Suffering and euthanasia: a qualitative study of dying cancer patients' perspectives.

PurposeAlthough intolerable suffering is a core concept used to justify euthanasia, little is known about dying cancer patients’ own interpretations and conclusions of suffering in relation to euthanasia.MethodsSixty-six patients with cancer in a palliative phase were selected through maximum-variation sampling, and in-depth interviews were conducted on suffering and euthanasia. The interviews were analyzed using qualitative content analysis with no predetermined categories.ResultsThe analysis demonstrated patients’ different perspectives on suffering in connection to their attitude to euthanasia. Those advocating euthanasia, though not for themselves at the time of the study, did so due to (1) perceptions of suffering as meaningless, (2) anticipatory fears of losses and multi-dimensional suffering, or (3) doubts over the possibility of receiving help to alleviate suffering. Those opposing euthanasia did so due to (1) perceptions of life, despite suffering, as being meaningful, (2) trust in bodily or psychological adaptation to reduce suffering, a phenomenon personally experienced by informants, and (3) by placing trust in the provision of help and support by healthcare services to reduce future suffering.ConclusionsDying cancer patients draw varying conclusions from suffering: suffering can, but does not necessarily, lead to advocations of euthanasia. Patients experiencing meaning and trust, and who find strategies to handle suffering, oppose euthanasia. In contrast, patients with anticipatory fears of multi-dimensional meaningless suffering and with lack of belief in the continuing availability of help, advocate euthanasia. This indicates a need for healthcare staff to address issues of trust, meaning, and anticipatory fears.