Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (p = 0.004) and without burdening symptoms (p = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; p = 0.002) and stronger caregiver burden (p = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.

Implementation of an Advance Care Planning Inventory and Its Possible Effect on Quality of Dying: A Nationwide Cross-Sectional Study in Group Homes for Persons with Dementia in Japan

This study aimed to develop an inventory for advance care planning implementation for persons with dementia in group homes and to examine the association between inventory implementation and residents’ quality of dying. A nationwide cross-sectional study was conducted via questionnaires mailed from 2000 group homes in Japan, selected through stratified random sampling. Participants were managers and care planners who had provided end-of-life care for recently deceased residents. The newly developed inventory was used to assess advance care planning implementation for persons with dementia, and the Quality of Dying in Long-term Care Scale was used to evaluate quality of dying. The valid response rate was 28.5% (n = 569). The factor structure of the newly developed Advance Care Planning Practice Inventory and the association between its implementation and quality of dying were verified using factor analysis and internal consistency, and logistic regression, respectively. The composite score and the factor score of the newly developed inventory were significantly associated with quality of dying (p < 0.05). The implementation of advance care planning improves the quality of dying. These findings can be used in development of educational programs, as well as research on advance care planning for care providers.

Providing Medical Care at the End of Life – A Cross-Sectional Study of Long-Term Care Facilities in Switzerland

The provision of high-quality palliative care in nursing homes (NHs) requires specific knowledge and skills among health professionals. The aims of the study were to assess quality of care during the dying process and quality of end-of-life of NH residents in the French and Italian parts of Switzerland. 90 residents died during the study period (mean age 88.7 years). Mean of the “End-of-Life in Dementia Scales – Comfort Assessment while Dying” score was 35.7 (theoretical range 14–42). Mean of the “Quality of Dying in LongTerm Care” score was 38.3 (theoretical range 11–55). In conclusion, the quality of dying and quality of end-of-life care in NH studied can be improved improved, in particular on the anticipation level. Die Bereitstellung einer qualitativ hochwertigen Palliativversorgung in Pflegeheimen erfordert spezifische Fähigkeiten. Ziel der Studie war es, die Qualität der Sterbebegleitung von Bewohnern, die in der französisch- und italienischsprachigen Schweiz in Pflegeheimen sterben, zu bewerten. 90 Bewohner starben während der Studiendauer (Durchschnittsalter 88,7 Jahre). Der mittlere Wert der «End-of-Life in Dementia Scales – Comfort Assessment while Dying» lag bei 35,7 (theoretischer Bereich 14–42). Der Mittelwert der Skala «the Quality of Dying in LongTerm Care» lag bei 38,3 (theoretischer Bereich 11–55). Zusammenfassend lässt sich sagen, dass die Qualität der Versorgung am Lebensende in den untersuchten Pflegeheimen verbessert werden kann, insbesondere im Hinblick auf die Antizipation.

Quality of dying in hospital general wards: a cross-sectional study about the end-of-life care

Background In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. Objectives To describe treatments, symptoms and clinical management of adult patients at the end of their life and explore whether these differ according to expectation of death. Methods Single-centre cross-sectional study performed in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between nursing treatments delivered and patients’ characteristics, quality of dying and nurses’ expectation about death was summarized by means of multiple correspondence analysis (MCA). Results Few treatments were found statistically associated with expectation of death in the 187 patients included. In the last 48 h, routine (70.6%) and biomarkers (41.7%) blood tests were performed, at higher extent on patients whose death was not expected. Many symptoms classified as severe were reported when death was highly expected, except for agitation and respiratory fatigue which were reported when death was moderately expected. A high Norton score and absence of anti-bedsore mattress were associated with unexpected death and poor quality of dying, as summarized by MCA. Quality of dying was perceived as good by nurses when death was moderately and highly expected. Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6 and 57.8%, denoting a fair agreement between the two professionals (k = 0.24, P < 0.001). The palliative care consultant was requested for only two patients. Conclusion Staff in medical and surgical wards still deal inadequately with the needs of dying people. Presence of hospital-based specialist palliative care could lead to improvements in the patients’ quality of life.

Impact of end-of-life respiratory modalities on quality of dying and death and symptom relief in patients with interstitial lung disease: a multicenter descriptive cross-sectional study

Background: Respiratory modalities that applied at end of life may affect burden of distressing symptoms and quality of dying and death (QODD) among patients with end-stage interstitial lung disease (ILD); however, there have been few studies into respiratory modalities applied to these patients near death. We hypothesized that high-flow nasal cannula (HFNC) may contribute to improved QODD and symptom relief in patients with end-stage ILD.Objectives: This multicenter study examined the proportion of end-of-life respiratory modalities in a real-world setting and explored its impact on QODD and symptom relief among patients dying with ILD.Methods: Consecutive patients with ILD who died in four participating institutions in Japan from 2015 to 2019 were identified and divided into four groups according to end-of-life respiratory modality: conventional oxygen therapy (COT), HFNC, non-invasive ventilation (NIV), and invasive mechanical ventilation (IMV). In addition, a mail survey was performed to quantify the QODD and symptom relief at their end of life from a bereaved family’s perspective. QODD and symptom relief were quantified using the Good Death Inventory (GDI) for patients with a completed bereavement survey. The impact of end-of-life respiratory modalities on QODD and symptom relief was measured by multivariable linear regression using COT as a reference.Results: Among 177 patients analyzed for end-of-life respiratory modalities, 80 had a completed bereavement survey. The most common end-of-life respiratory modality was HFNC (n=76, 42.9%), followed by COT (n=62, 35.0%), NIV (n=27, 15.3%), and IMV (n=12, 6.8%). Regarding the place of death, 98.7% of patients treated with HFNC died outside the intensive care unit. Multivariable regression analyses revealed patients treated with HFNC had a higher GDI score for QODD [partial regression coefficient (B)=0.46, 95% CI: 0.07–0.86] and domain score related to symptom relief (B=1.37, 95% CI: 0.54–2.20) than those treated with COT. Conclusion: HFNC was commonly used in patients with end-stage ILD in real-world setting and was associated with higher QODD and better symptom relief. HNFC may contribute to improved QODD and symptom relief in these patients.

Quality of dying after acute stroke

Introduction There is a lack of evidence concerning the palliative needs of patients with acute stroke during end-of-life care. We interviewed relatives of patients who deceased in our stroke unit about the quality of dying and compared their experiences with those of nurses. Patients and Methods Relatives of 59 patients were interviewed approximately 6 weeks after the patient had died. The primary outcome was a score assessing the overall quality of dying on a scale ranging from 0 to 10, with 0 representing the worst quality and 10 the best quality. We investigated the frequency and appreciation of specific aspects of the dying phase with an adapted version of the Quality of Death and Dying Questionnaire. The nurse who was most frequently involved in the end-of-life care of the patient completed a similar questionnaire. Results Family members were generally satisfied with the quality of dying (median overall score 8; interquartile range, 6–9) as well as with the care provided by nurses (9; 8–10) and doctors (8; 7–9). Breathing difficulties were frequently reported (by 46% of the relatives), but pain was not. Unsatisfactory experiences were related to feeding (69% unsatisfactory), inability to say goodbye to loved ones (51%), appearing not to have control (47%), and not retaining a sense of dignity (41%). Two-thirds of the relatives reported that palliative medication adequately resolved discomfort. There was a good correlation between the experiences of relatives and nurses. Discussion and Conclusion Most relatives were satisfied with the overall quality of dying. Negative experiences concerned feeding problems, not being able to say goodbye to loved ones, sense of self control and dignity, and breathing difficulties. Experiences of nurses may be a reasonable and practical option when evaluating the quality of dying in acute stroke patients.

Validation of the Quality of Dying and Death Questionnaire among the Chinese populations

Objective This study reports the evaluation of the original 31-item Quality of Dying and Death Questionnaire (QODD) using a sample of caregivers of recently deceased older adults in China, and the validation of a shortened version (QODD-C) derived from the original scale. Methods The translation was performed using a forward and back method. The full scale was tested with 212 caregivers of decedents in four regions of China. Confirmatory factor analysis tested the model fit between the full Chinese version and the original conceptual model and generated the QODD-C. The psychometric analysis was performed to evaluate the QODD-C's internal consistency, content validity, construct validity, and discriminant validity. Results A five-domain, 18-item QODD-C was identified with excellent internal consistency reliability (Cronbach's α = 0.933; split-half Pearson's value = 0.855). The QODD-C total score was significantly associated with constructs related to five domains. The caregiver's relationship with the decedent, the decedent's age at death, death reason, and death place was significantly associated with the QODD-C total score. Significance of results The QODD-C is a valid and reliable instrument for assessing the quality of dying and death among the Chinese populations.

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Design: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. Setting/participants: Family caregivers of nursing home residents with dementia in the Netherlands ( n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052–0.244; adjusted 0.170 points 95% CI, 0.055–0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of −0.175 points (95% CI, −0.291 to −0.058) per year increment. With adjustment, the trend was not significant (−0.070 EOLD-CAD total score points, 95% CI, −0.205 to 0.065) and only the EOLD-CAD subscale ‘Well being’ decreased. Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

Perceptions of Behavioral Awareness, Intention, and Readiness for Advance Care Planning: A Mixed-Method Study among Older Indigenous Patients with Late-Stage Cancers in Remote Areas of Eastern Taiwan

The first Patient Right to Autonomy Act enacted in Asia in 2019 has enabled every Taiwanese citizen to plan for his/her end-of-life (EOL) in case of incompetency. Advance care planning (ACP) has been highly promoted for individuals with terminal, life-threatening illnesses, particularly in the mainstream society, and efforts have been made by the Taiwanese government to train health care providers in order to optimize patients’ quality of dying. However, such advanced decisions and discussions regarding life-sustaining treatment and EOL care remain scarce among older ethnically minority patients. A multiple-case study employing a mixed-method (n = 9) was undertaken to explore indigenous patients’ ACP perceptions. Both quantitative and qualitative information was obtained from indigenous patients, a minority group whose socio-economic and educational status are different from the general Taiwanese population. An initiative was made to describe ACP behavioral awareness, intention, and readiness of older terminal patients from four tribes with seven late-stage cancers in remote, mountainous areas of eastern Taiwan. Our findings showed that according to the Transtheoretical Model, terminal indigenous patients’ ACP readiness was at a precontemplation stage. Their lack of fundamental ACP awareness, insufficient healthcare resources, life-sustaining value in a Christian faith context, and the prevalent health disparity in the remote communities have negatively affected indigenous patients’ intention to participate in ACP. We provide suggestions to further promote ACP in this group and suggest that health information should be tailored at various readiness stages in order to overcome barriers and decrease ACP literacy discrepancies. This study calls attention to an understudied area of ACP behaviors, an overlooked need in EOL care for older cancer patients of unique cultural backgrounds, and the imperativeness to ensure cultural minority group’s EOL care is consistent with patients’ preferences.