BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being. RESULTS: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life. CONCLUSIONS: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.
This study aimed at investigating attitudes toward assisted suicide among individuals with amyotrophic lateral sclerosis, and the differences in health status (illness severity and functional disability) and psychosocial adjustment (depression, perceived stress, social support, and coping) between those in favor of and those against assisted suicide. This study also aimed at describing the characteristics of terminally-ill individuals who acknowledge contemplating assisted suicide. Forty-four individuals diagnosed with amyotrophic lateral sclerosis were surveyed about their attitudes and the circumstances that would make them contemplate assisted suicide and filled out standardized measures of mood, stress, social support, coping, and illness status. Seventy percent of the sample found assisted suicide morally acceptable and 60% thought it should be legalized. In addition, 60% of patients agreed they could foresee circumstances that would make them contemplate assisted suicide, but only three (7%) indicated they would have requested it already if it had been legal. Willingness to contemplate assisted suicide was associated with reports of elevated levels of depressive symptoms and reports of hopelessness. Results highlight the need to assess psychological status carefully when terminally ill individuals begin contemplating assisted suicide or voice a request for it.
BACKGROUND: Most studies on attitudes towards euthanasia and physician-assisted suicide (PAS) have been conducted in healthy populations. The aim of this study is to explore and describe attitudes towards, and wishes for, euthanasia/PAS in cancer patients with short life expectancy. METHOD: Semi-structured interviews with 18 cancer patients with a life expectancy of less than nine months. All patients were recruited from an inpatient palliative medicine unit. RESULTS: Patients holding a positive attitude towards euthanasia/PAS do not necessarily want euthanasia/PAS for themselves. Wishes are different from requests for euthanasia/PAS. Fear of future pain and a painful death were the main reasons given for a possible wish for euthanasia/PAS. Worries about minimal quality of life and lack of hope also contributed to such thoughts. Wishes for euthanasia/PAS were hypothetical; they were future oriented and with a prerequisite that intense pain, lack of quality of life and/or hope had to be present. Additionally, wishes were fluctuating and ambivalent. CONCLUSION: The wish to die in these patients does not seem to be constant. Rather, this wish is more appropriately seen as an ambivalent and fluctuating mental 'solution' for the future. Health care providers should be aware of this when responding to utterances regarding euthanasia/PAS.
In this grounded theory study, the authors interviewed caregivers and patients in end-of-life cancer care and found Balancing to be a fundamental process explaining the problem-solving strategies of most participants and offering a comprehensive perspective on both health care in general and end-of-life cancer care in particular. Balancing stages were Weighing--sensing needs and wishes signaled by patients, gauging them against caregiver resources in diagnosing and care planning; Shifting--breaking bad news, changing care places, and treatments; and Compensating--controlling symptoms, educating and team-working, prioritizing and "stretching" time, innovating care methods, improvising, and maintaining the homeostasis of hope. The Balancing outcome is characterized by Compromising, or "Walking a fine line," at best an optimized situation, at worst a deceit.
In recent decades, there has been a shift from hospitalisation to home care throughout the Western world, even for children. Hospital-at-home for children is in a developmental phase and represents a new service model in Norway. The aim of this pilot study conducted in a Norwegian healthcare setting was to explore how parents with a sick child experienced early hospital discharge and further care at home. The qualitative data are drawn from nine interviews with parents with a child admitted to hospital-at-home. Transcripts of interviews were analysed using a method of qualitative content analysis. In the analysis, Antonovsky's salutogenic perspective on how people cope in demanding life situations was applied. The results show that the parents experienced hospital-at-home as providing a calmer, more predictable family life compared to hospitalisation. They argued that good information and training in medical procedures prior to hospital discharge made hospital-at-home easier to master. The participants pointed out the importance of the professionals' competence and their ability to interact with the child and the parent. The certitude that they could return to the hospital at any time made them feel safe and in control. The parents associated hospital-at-home with a kind of normalisation of their family life. They had a prominent need for normalisation, and this was probably a motivation for agreeing to the hospital-at-home arrangement. The findings indicate that hospital-at-home for children is a good solution if the parents are well prepared and feel in control. In addition, certain structural conditions must be in place before this type of health care is established; there must be a certain volume of patients and the distance to the hospital must be clearly limited. Norwegian policymakers should initiate more pilot testing of hospital-at-home for children. Users and clinicians should be involved in establishing and evaluating these services.
The aim of this study is to describe the experience of time as it presents itself at the place being situated when living with severe incurable disease and receiving palliative care. The empirical data consist of 26 open-ended interviews with 23 patients receiving palliative care at home, at a palliative day care, in a palliative bed unit in hospital or in a nursing home in Norway. A common meaning of a shifting space for living emerged from the analysis and was revealed through three different aspects: (i) Transition from a predictable to an unpredictable time: To live with severe incurable disease marks a transition to a changed life involving an ongoing weakened and altered body with bothersome symptoms making experience of time different and unpredictable. (ii) Transition between a safe and unsafe time: When time is unpredictable, feeling safe is revealed as essential to how time is experienced at the place being situated. (iii) To be in transition from a homely to a homeless existence: In a time of increased bodily weakness, unpredictable ailments and displacements, the sense of belonging to the place is revealed as significant to the experience of time. Not knowing where to be in a time of change is like an existential cry of distress where the foothold in existence is lost. The findings are discussed and interpreted as an embodied experience originating from the passage of time continually affecting life sometimes so fundamentally that it marks a transition to a changed space of life that is reflected in the experience of time.
Little is known about experiences with receiving home nursing care when old, living in a rural area, and suffering from end-stage cancer. The aim of this study was thus to investigate bereaved family members' perceptions of suffering by their older relatives when receiving palliative home nursing care. Qualitative semi-structured interviews were conducted with 10 family members, in Norway during autumn 2015, and directed content analysis guided by Katie Eriksson's theoretical framework on human suffering was performed upon the data. The two main categories identified reflected expressions of both suffering and well-being. Expressions of suffering were related to illness, to care and to life and supported the theory. Expressions of well-being were related to other people (e.g. familiar people and nurses), to home and to activity. The results indicate a need to review and possibly expand the perspective of what should motivate care. Nursing and palliative care that become purely disease and symptom-focused may end up with giving up and divert the attention to social and cultural factors that may contribute to well-being when cure is not the goal.
Recent research into the desire for death among people with terminal illness has begun to recognize the importance of "feeling oneself a burden to others" as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi-structured interviews. The sense of self-perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r = 0.02-0.24) and higher correlations with psychological problems (r = 0.35-0.39) and existential issues (r = 0.45-0.49). Comparisons of participants with high or low levels of self-perceived burden showed the importance of this factor for overall quality of life. In summary, self-perceived burden is an important but underestimated dimension of social cognition in the medically ill.
The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.
A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.
Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.
Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.