Dimensions of end-of-life preferences in the Swiss general population aged 55+.

BACKGROUND: understanding end-of-life preferences in the general population and how they are structured in people's minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues. OBJECTIVE: explore key dimensions underlying end-of-life preferences in a nationally representative sample of adults aged 55 and over in Switzerland. METHODS: respondents (n = 2,514) to the Swiss version of the Survey of Health, Ageing and Retirement in Europe assessed the importance of 23 end-of-life items on a 4-point Likert scale. The factorial structure of the underlying end-of-life preferences was examined using exploratory structural equation modelling. RESULTS: four dimensions underlying end-of-life preferences were identified: a medical dimension including aspects related to pain management and the maintenance of physical and cognitive abilities; a psychosocial dimension encompassing aspects related to social and spiritual support; a control dimension addressing the need to achieve some control and to put things in order before death; and a burden dimension reflecting wishes not to be a burden to others and to feel useful to others. CONCLUSION: highlighting the multi-dimensionality of end-of-life preferences, our results reaffirm the importance of a holistic and comprehensive approach to the end of life. Our results also provide a general framework that may guide the development of information and awareness campaigns on end-of-life care issues in the general population, informational materials and guidelines to support healthy individuals in end-of-life thinking and planning, and advance directive templates appropriate for healthy individuals.

Views on a "Good Death": End-of-Life Preferences and Their Association With Socio-Demographic Characteristics in a Representative Sample of Older Adults in Switzerland.

The current study explores the end-of-life (EOL) preferences of a national representative sample of adults aged 55 and older in Switzerland and shows how these preferences vary by respondents' sociodemographic characteristics and the linguistic region in which they live. Many of the presented EOL attributes are considered as (very) important by a large majority of the older population in Switzerland with significant variations across sociodemographic groups. Specifically, gender is related to psychosocial aspects of EOL, age to the importance attached to avoiding being a burden on the society, and education levels to preferences regarding overtreatment and advance care planning. The results highlight the importance of a personalized, holistic and interdisciplinary approach to EOL and EOL care, since social, psychological, organizational and physical aspects of EOL are rated as (very) important with significant differences in EOL preferences across sociodemographic groups.

Physicians' attitudes toward end-of-life decisions in amyotrophic lateral sclerosis.

OBJECTIVE: This study aims (1) to assess physicians' attitudes toward different palliative end-of-life (EOL) practices in amyotrophic lateral sclerosis (ALS) care, including forgoing artificial nutrition and hydration (FANH), continuous sedation until death (CSD), and withdrawing invasive ventilation (WIV), and toward physician-assisted dying (PAD) including physician-assisted suicide and euthanasia and (2) to explore variables influencing these attitudes. METHODS: We used two clinical vignettes depicting ALS patients in different stages of their disease progression to assess the influence of suffering (physical/psycho-existential) on attitudes toward WIV and the influence of suffering and prognosis (short-term/long-term) on attitudes toward FANH, CSD, and PAD. RESULTS: 50 physicians from European ALS centers and neurological departments completed our survey. Short-term prognosis had a positive impact on attitudes toward offering FANH (p = 0.014) and CSD (p = 0.048) as well as on attitudes toward performing CSD (p = 0.036) and euthanasia (p = 0.023). Predominantly psycho-existential suffering was associated with a more favorable attitude toward WIV but influenced attitudes toward performing CSD negatively. Regression analysis showed that religiosity was associated with more reluctant attitudes toward palliative EOL practices and PAD, whereas training in palliative care was associated with more favorable attitudes toward palliative EOL practices only. CONCLUSION: ALS physicians seem to acknowledge psycho-existential suffering as a highly acceptable motive for WIV but not CSD. Physicians appear to be comfortable with responding to the patient's requests, but more reluctant to assume a proactive role in the decision-making process. Palliative care training may support ALS physicians in these challenging situations.

Relationship Between Spirituality, Meaning in Life, Psychological Distress, Wish for Hastened Death, and Their Influence on Quality of Life in Palliative Care Patients.

CONTEXT: Spiritual, existential, and psychological issues represent central components of quality of life (QOL) in palliative care. A better understanding of the dynamic nature underlying these components is essential for the development of interventions tailored to the palliative context. OBJECTIVES: The aims were to explore 1) the relationship between spirituality, meaning in life, wishes for hastened death and psychological distress in palliative patients and 2) the extent to which these nonphysical determinants influence QOL. METHODS: A cross-sectional study involving face-to-face interviews with Swiss palliative patients was performed, including the Schedule for Meaning in Life Evaluation (SMILE), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), the Idler Index of Religiosity (IIR), the Hospital Anxiety and Depression Scale (HADS), and the Schedule of Attitudes toward Hastened Death (SAHD). QOL was measured with a single-item visual analogue scale (0-10). RESULTS: Two hundred and six patients completed the protocol (51.5% female; mean age = 67.5 years). The results indicated a significant negative relationship between FACIT-Sp/SMILE and HADS total scores (P = 0.000). The best model for QOL explained 32.8% of the variance (P = 0.000) and included the FACIT-Sp, SMILE, and SAHD total scores, the IIR "private religiosity" score, as well as the HADS "depression" score. CONCLUSION: Both spiritual well-being and meaning in life appear to be potential protective factors against psychological distress at the end of life. Since nonphysical determinants play a major role in shaping QOL at the end of life, there is a need for the development of meaning-oriented and spiritual care interventions tailored to the fragility of palliative patients.

Mindfulness in informal caregivers of palliative patients.

OBJECTIVES: Mindfulness is a concept of growing impact on psychotherapy and has been shown to be effective for stress reduction and to improve psychological well-being. Existential Behavioural Therapy (EBT) was developed to support relatives of palliative care (PC) patients to cope with their situation during caregiving and bereavement. Mindfulness training was a core element of the intervention. We investigated the relationship between mindfulness, mental distress, and psychological well-being in informal caregivers, and evaluated if the effects of the intervention were mediated by mindfulness. METHODS: Relatives of PC inpatients took part in a randomized-controlled EBT trial and completed the Cognitive and Affective Mindfulness Scale-Revised, items from the Five Facets of Mindfulness as well as the Brief Symptom Inventory, the Satisfaction with Life Scale, the WHOQOL-BREF, a numerical rating scale on quality of life (range 0-10), and the Schedule for Meaning in Life Evaluation at pre- and post-intervention, and a 3- and 12-months follow-up. RESULTS: One-hundred-and-thirty carers were included, most of them (71.6%) recently being bereaved at the beginning of the intervention. High correlations between mindfulness and mental distress (r = -0.51, p < 0.001) as well as life satisfaction (r = 0.52, p < 0.001) were found. Mindfulness was a significant predictor of improvement in psychological distress, meaning in life and quality of life three months after the intervention. The EBT effects were partly mediated by mindfulness. SIGNIFICANCE OF RESULTS: Mindfulness seems to be a promising concept in supporting informal caregivers of PC patients. Further research is needed to identify the required format and intensity of mindfulness practice necessary for improvement.

Does the working environment influence health care professionals' values, meaning in life and religiousness? Palliative care units compared with maternity wards.

CONTEXT: Increased altruism, self-transcendence, and quests for meaning in life (MiL) have been found in palliative care (PC) patients and their families who experience the finiteness of life. Similar changes were observed in healthy subjects who were experimentally confronted with their mortality. OBJECTIVES: The study investigated how daily experiences of the transitoriness of life influence PC health care professionals' (HCPs) values, MiL, and religiousness. METHODS: In a cross-sectional study, the Schwartz Value Survey, the Schedule for Meaning in Life Evaluation, and the Idler Index of Religiosity were used to investigate personal values, MiL, and private religiousness. HCPs working in PC (confronted with death) were compared with a control group of HCPs working at maternity wards (MWs) using multivariate models. Differences were considered to be statistically significant at P < 0.05. RESULTS: Seventy PC- and 70 MW-HCPs took part in the study (response rate 74.0%). No differences between the groups were found in overall MiL satisfaction scores. PC-HCPs were significantly more religious than MW-HCPs; they listed spirituality and nature experience more often as areas in which they experience MiL. Furthermore, hedonism was more important for PC-HCPs, and they had higher scores in openness-to-change values (stimulation and self-direction). MW-HCPs were more likely to list family as a MiL area. They assigned more importance to health and scored higher in conservation values (conformity and security). Duration of professional experience did not influence these results. CONCLUSION: Basic differences in values, MiL, and religiousness between PC-HCPs and MW-HCPs might have influenced the choice of working environment because no effect of job duration was observed. Longitudinal research is needed to confirm this hypothesis.

Determinants of the effect of existential behavioral therapy for bereaved partners: a qualitative study.

BACKGROUND: Informal caregivers of palliative patients took part in existential behavioral therapy (EBT), a group intervention comprising mindfulness exercises to reduce psychological distress and improve quality of life. OBJECTIVES: This study examined what the participants perceived as helpful to cope with their loss during the first year of bereavement, particularly with regard to the EBT intervention. DESIGN: Sixteen problem-centered, semi-structured interviews were evaluated with content analysis. RESULTS: Two main categories were found: social support and self-regulation. Social support includes sense of belonging as well as emotional, cognitive, and practical help experienced from others. Mindfulness and acceptance, a clear focus on the positive, and orientation toward the future were helpful strategies of self-regulation; these were also part of the EBT intervention. Mindfulness was understood as permitting emotions and acceptance of one's inner processes, even if they were not pleasant, and was found to be helpful to stop ruminative thinking. CONCLUSIONS: The categories considered as being helpful parallel core elements of EBT and recent grief theories. The intervention was found to be supportive and met the needs of the participants. The interviewees appreciated the continuity of EBT support from palliative care into bereavement.

Meaning in life in palliative care patients.

CONTEXT: The construct "meaning in life" (MiL) has recently raised the interest of clinicians working in psycho-oncology and end-of-life care and has become a topic of scientific investigation. OBJECTIVES: The aim of this study was to compare MiL in palliative care (PC) patients with a representative sample of the German population. METHODS: In this cross-sectional study, all PC patients treated in the PC inpatient unit and through the PC consult service at Ludwig-Maximilians-University Hospital, Munich, from May 2005 to July 2007 were eligible to participate. Patients were interviewed by a doctoral student, psychologist, or physician, all previously trained to administer the Schedule for Meaning in Life Evaluation (SMiLE) in a standardized way. In the SMiLE, respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20-100), satisfaction (IoS, range 0-100), and weighted satisfaction (IoWS, range 0-100) are calculated. RESULTS: One hundred PC patients completed the SMiLE: the IoS was 70.2 ± 19.7, the IoW was 84.7 ± 11.5, and the IoWS was 72.0 ± 19.4. The representative sample (n=977) scored significantly higher in the IoS (82.8 ± 14.7) and IoWS (83.3 ± 14.8) but not in the IoW (85.6 ± 12.3). Compared with healthy individuals, PC patients are more likely to list partner, friends, leisure, spirituality, well-being, nature/animals, and pleasure as meaningful areas. Examining the satisfaction ratings, it is noteworthy that PC patients' satisfaction scores are fairly high (and not lower than their healthy counterparts') in a number of domains: family, partner, home/garden, spirituality, and finances. On the other hand, they score significantly lower in nature/animals, leisure, friends, well-being, altruism, work, pleasure, and health. CONCLUSION: These findings underscore the potential of the SMiLE for identifying areas that are particularly important to individuals, and that can be targeted by the PC team to improve overall life satisfaction at the end of life.

Promoting excellence in end-of-life care in ALS.

The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.

Effects of spiritual care training for palliative care professionals.

Little is known about the effects of spiritual care training for professionals in palliative medicine. We therefore investigated prospectively the effects of such training over a six-month period. All 63 participants of the three and a half-day training were asked to fill out three questionnaires: before and after the training, as well as six months later. The questionnaires included demographic data, numeric rating scales about general attitudes towards the work in palliative care, the Self-Transcendence Scale (STS), the spiritual subscale of the Functional Assessment of Chronic Illness Therapy (FACIT-Sp) and the Idler Index of Religiosity (IIR). Forty-eight participants (76%) completed all three questionnaires (91% women, median age 49 years; 51% nurses, 16% hospice volunteers, 14% physicians). Significant and sustained improvements were found in self-perceived compassion for the dying (after the training: P=0.002; 6 months later: P=0.025), compassion for oneself (P <0.001; P =0.013), attitude towards one's family (P =0.001; P =0.031), satisfaction with work (P < 0.001; P = 0.039), reduction in work-related stress (P < 0.001; P = 0.033), and attitude towards colleagues (P = 0.039; P = 0.040), as well as in the FACIT-Sp (P < 0.001; P = 0.040). Our results suggest that the spiritual care training had a positive influence on the spiritual well-being and the attitudes of the participating palliative care professionals which was preserved over a six-month period.