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The early introduction of palliative care can have a positive impact on the quality of life of patients suffering from life-limiting diseases. However, the palliative care needs of older, frail, housebound patients are still mostly unknown, as is the impact of frailty on the importance of these needs.
Objectives
To identify the palliative care needs of frail, older, housebound patients in the community.
Methods
We conducted a cross-sectional observational study. This study took place in a single primary care center and included patients who were ≥65 years old, housebound, followed by the Geriatric Community Unit of the Geneva University Hospitals.
Results
Seventy-one patients completed the study. Most patients were female (56.9%), and mean age (SD) was 81.1 (±7.9). The Edmonton Symptom Assessment Scale mean (SD) score was higher in frail patients as opposed to vulnerable patients for tiredness (p = 0.016), drowsiness (p = 0.0196), loss of appetite (p = 0.0124), and impaired feeling of well-being (p = 0.0132). There was no difference in spiritual well-being, measured by the spiritual scale subgroup of the Functional Assessment of the Chronic Illness Therapy–Spiritual Well-Being scale (FACIT-sp) between frail and vulnerable participants, although scores in both groups were low. Caregivers were mainly spouses (45%) and daughters (27.5%) with a mean (SD) age of 70.7 (±13.6). The overall carer–burden measured by the Mini-Zarit was low.
Significance of results
Older, frail, housebound patients have specific needs that differ from non-frail patients and should guide future palliative care provision. How and when palliative care should be provided to this population remains to be determined.
Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults’ and caregiver characteristics and 1-year mortality among older adults.
Methods
We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults’ symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults’ 1-year mortality; and caregiver outcomes.
Results
We delineated 3 profiles of older adults – primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p<0.01 for all).
Significance of results
The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers’ outcomes.
The purpose of this study is to investigate the reliability generalization of 2 forms of the Supportive Care Needs Survey (SCNS), the questionnaires commonly used to assess the unmet needs of cancer patients.
Methods
Reviewed articles were retrieved through databases including PubMed, Ovid, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), Web of Science, Scopus, and ProQuest. The inclusion criteria were quantitative studies that assessed the unmet needs of cancer patients using the SCNS and presented reliability coefficients with sample size. Two independent reviewers examined the studies according to inclusion criteria and quality. The final studies included in the meta-analysis were determined by consensus. A random effects model was adopted for the analysis. To estimate reliability coefficients, the alpha coefficients for each study were transformed into the Z statistic for normalization and back to alpha. The values were weighted by the inverse of the studies’ variance. The Higgins I2 statistic was used to test for heterogeneity, and the Egger’s test and funnel plot were performed to evaluate publication bias.
Results
Out of 12,522 studies, 26 studies were included in the meta-analysis. The overall mean weighted effect size of the SCNS long-form (LF) was 0.90 and the subdomains ranged from 0.90 to 0.97. The overall alpha for the SCNS short-form (SF) was 0.92, and the alphas for the subdomains were between 0.81 and 0.92. The estimated reliability coefficients in both LF and SF were highest in psychological and health information needs and lowest in sexuality. No publication bias was indicated in this study.
Significance of results
In this study, the overall reliability of SCNS was presented and the factors affecting the reliability of SCNS were identified. The results of this study may help clinicians or researchers make decisions about selecting tools to measure unmet needs of cancer patients.
While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients’ resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examine, in long-term care facilities (LTCF), residents’ definitions of and factors influencing their WTL.
Methods
Twenty residents (mean age 85.8 ± 10.3 years, 70% women) of 3 Swiss LTCFs gave informed consent and participated in semi-structured interviews about their WTL. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted to identify recurrent themes (40% double coded).
Results
The majority of residents reported that they had not thought about the WTL. Nevertheless, they had no difficulty in describing it as innate in their lives. They spontaneously mentioned factors that contributed to their WTL, classified into 5 themes: (1) relationships – primarily with family and health professionals, secondarily with other residents; (2) living situation – the LTCF as a necessary place providing care, constant professional presence, and security, yet necessitates inconveniences such as loss of independence; (3) personality factors – positive outlook on life or spirituality; (4) engagement in routines – organized activities and individual daily routines; and (5) health status – primarily related to functional health.
Significance of results
Examining WTL provides important insights into elements that are essential to take into account in planning care and promoting well-being in LTCF residents. The themes identified provide important starting points for improving life in LTCFs.
This study examined potential predictors of persistent depressive symptoms in a cohort of seriously ill older adults (aged 65+ years) receiving home care services.
Methods
This was a retrospective cohort study using secondary data collected from the Resident Assessment Instrument for Home Care for all assessments completed between 2001 and 2020. The cohort included seriously ill individuals with depressive symptoms at baseline and who continued to have depressive symptoms on reassessment within 12 months (n = 8,304). Serious illness was defined as having severe health instability, a prognosis of less than 6 months, or a goal of care related to palliative care (PC) on admission to the home care program.
Results
The mean age of the sample was 80.8 years (standard deviation [SD] = 7.7), 61.1% were female, and 82.1% spoke English as their primary language. The average length of time between assessments was 4.9 months (SD = 3.3). During that time, 64% of clients had persistent symptoms of depression. A multivariate logistic regression model found that language, pain, caregiver burden, and cognitive impairment were the most significant predictors of experiencing persistent depressive symptoms.
Significance of results
Persistent depressive symptoms are highly prevalent in this population and, left untreated, could contribute to the person experiencing a “bad death.” Some of the risk factors for this outcome are amenable to change, making it important to continually assess and flag these factors so interventions can be implemented to optimize the person’s quality of life for as long as possible.
Receiving bad news about one’s health can be devastating, yet little is known about how the therapeutic nature of the environment where bad news is delivered affects the experience. The current study aimed to explore how patients and their families were affected by the language and the built, natural, social, and symbolic environments when receiving bad news, through the Therapeutic Landscapes theoretical framework.
Methods
Patients diagnosed with a life-limiting illness living in regional Victoria who had a hospital admission within 24 months and a diagnostic/prognostic conversation were invited to participate, as well as a family member who witnessed the conversation. Participants were recruited through social media and snowballing, resulting in 14 online semi-structured interviews being conducted between November 2021 and March 2022, audio-recorded, and transcribed verbatim. Reflexive thematic analysis was used to develop the themes.
Results
Fourteen semi-structured interviews were conducted with women aged between 30 and 77 years. Interviews lasted between 45 and 120 minutes, with an average of 69 minutes, and were conducted online or via mobile phone. Four central themes were developed: “Hearing bad news for the first time,” “Preferences for having hard conversations,” “Creating a sense of safety for ongoing care,” and “The therapeutic nature of the ward.”
Significance of results
This body of work will help inform practice and future policy regarding bad news delivery and the design and aesthetics of environments where bad news is delivered. It is essential that bad news is delivered within a quiet, calm, and emotionally safe environment within a supportive therapeutic relationship.
Patients with cancer often have unmet needs (e.g., physical, psychosocial, and emotional) during their cancer journey, putting them at risk for distress. This study aimed to identify factors associated with distress and to investigate the association between distress and acute health-care services utilization in a cohort of breast and gynecological cancer patients across different survivorship stages.
Methods
This was a retrospective cohort study of patients who visited National Cancer Centre Singapore between September 2019 and July 2020. Distress was evaluated using the self-reported Distress Thermometer and Problem List, with a distress thermometer score ≥4 signifying high distress. Data were extracted from electronic medical records. Multivariable logistic regression was used to identify demographic or clinical variables associated with distress and estimate the odds of emergency department (ED) visits and hospitalizations within 30 days of distress screening, adjusted for covariates.
Results
Of the 1386 patients included in the analysis, 510 (36.8%) reported high distress on their first distress screening. Variables associated with high distress included younger age, presence of psychiatric diagnosis, poorer Eastern Cooperative Oncology Group performance status, and shorter duration from cancer diagnosis to distress screening. Patients with high distress were associated with higher odds of ED visits (adjusted odds ratio [OR] = 2.25, 95% confidence interval [CI]: 1.14–4.43) and hospitalizations (adjusted OR = 2.11, 95% CI: 1.27–3.50) within 30 days of distress screening.
Significance of results
Self-reported high distress was associated with higher odds of increased acute health-care services utilization (ED visits and hospitalizations) in patients with breast and gynecological cancer. Identifying the subgroups at risk of high distress could trigger early interventions that reduce unplanned health-care services utilization and possibly health-care costs.
Currently, active euthanasia is legalized in only 7 countries worldwide. These countries have encountered problems in its implementation. The study aims to summarize the practical clinical problems in the literature on active euthanasia.
Methods
A systematic literature review was conducted using 140 works consisting of 130 articles from PubMed and EthxWeb and data from 10 euthanasia laws.
Results
After reviewing the specific problems reported to be associated with euthanasia in each country, 5 problems were extracted: many ambiguous conditions with room for interpretation, insufficient assurance of voluntariness, response to requests for euthanasia due to psychological distress, conscientious objection, and noncompliance by medical professionals.
Significance of results
Multiple ambiguous conditions that are open to interpretation can result in a “slippery slope phenomenon.” An insufficient guarantee of voluntariness violates the principle of respect for autonomy, which is the underlying justification for euthanasia. In cases of euthanasia due to mental anguish, a distinction between a desire for death caused by psychological pain alone prompted by mental illness and a desire for death caused by mental symptoms prompted by physical illness is essential. Conscientious objection should remain an option because of the heavy burden placed on doctors who perform euthanasia. Noncompliance by medical professionals due to ignorance and conflicts regarding euthanasia is contrary to procedural justice.
As the US tests models of care for the seriously ill, patient perceptions of the quality of care are important. Proxies are often needed for this group. We sought to understand the potential impact of proxy reports for the assessment of care quality and experience in cancer.
Methods
Secondary data analysis of a deidentified prospective study that included surveys of perceived care quality, including symptom management, from patients with advanced cancer receiving chemotherapy and their caregivers. Surveys were administered at diagnosis (time 1) and treatment (time 2), with top-box scoring used for analysis. Overall concordance was assessed using metrics including Gwet’s AC1. The proportion of the highest scores by respondent type within 2 subgroups were examined: (1) symptom burden and (2) practice setting.
Results
Data from 83 dyads were analyzed. Proxies and patients frequently reported the highest scores for quality (time 1: proxies: 77% and patients: 80%). At time 1, 14% of proxies and 10% of patients reported an unmet need for symptom palliation. Most patients reporting an unmet need gave the top score for quality (75%), but fewer proxies did so (45%). Proxy and patient reports were similar within practice settings. Concordance was at least moderate (nearly all outcomes >0.5 and some >0.8) by Gwet’s AC1.
Significance of results
Findings of at least moderate concordance and similar experience outcomes within subgroups suggest the use of proxies may not change estimates substantially. However, consideration should be taken when evaluating symptom management, particularly if such evaluations inform assessment of provider performance.
This study examined the relationship between moral distress, individual and professional values in oncology nurses.
Methods
Employing structural equation modeling, a descriptive-correlational study was conducted among 116 oncology nurses. Data were collected using the Moral Distress Scale-Revised Adult Nurses, the Nursing Professional Values Scale, and the Values Scale.
Results
The mean moral distress frequency was evaluated as low (1.6 ± 0.7) and the intensity as moderate (1.9 ± 0.8). Both the Nursing Professional Values Scale and Values Scale subdimension mean scores were at levels evaluated as high. There was no specific value that stood out from the others. Structural equation modeling analysis showed that individual values were found to have a direct and negative significant effect on moral distress intensity (β = −0.70, p < 0.01) and frequency (β = −0.58, p <0.01) and professional values had a direct positive and significant effect on moral distress intensity (β = 0.37, p < 0.05) and frequency (β = 0.25, p < 0.05).
Significance of results
It is believed that more national and international studies need to be conducted to examine the relationship between the moral distress concept and values. While individual values were found to have a direct and negative significant effect on moral distress, professional values had a direct positive and significant effect on moral distress.
This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.
Methods
Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5–19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family.
Results
Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more.
Significance of results
Although both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child’s developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.
The current study explored the impact of cancer-related fertility concerns on existential distress and meaning making among female breast cancer (BC) patients of childbearing age and assessed support needs.
Methods
The current study was embedded within a larger study. A seven-question online survey was administered to female BC participants to explore meaning and identity in their lives. Applied thematic analysis was used to analyze participants’ written responses.
Results
A total of 98 participants completed the survey, the majority of whom identified as white, married or partnered, and employed full time and with stage I or II BC. More than 50% of the participants expressed a need for support from a counselor or support group during their cancer experience. Three subthemes emerged related to existential distress and cancer-related fertility concerns: (1) loss of womanhood: treatment-related physical changes impact on gender identity; (2) existential distress due to treatment decisions impacting fertility; and (3) shattered vision: cancer-related infertility impact on meaning and purpose. Four subthemes emerged related to meaning making with fertility-related existential concerns: (1) coping with loss of meaning, (2) re-evaluating priorities in life; (3) resilience to loss, and (4) persistent loss of meaning.
Significance of Results
Study results offer valuable insights into the experiences of female BC survivors’ cancer-related fertility on existential distress and meaning making. Development of psychological interventions targeted to support this population to cope with existential distress due to cancer-related fertility concerns and meaning making are needed to improve the quality of life of this population.
Up to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement.
Methods
The participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patient’s death.
Results
The model selection chose 4 demographic and 4 preloss variables: family member’s nervousness and stress, the patient’s sense of security during palliative care, family members’ sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members’ continuing bond – internalized and continuing bond – externalized.
Significance of results
How family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.
In 2018, a study was conducted in the Eastern and South-eastern Europe and Central Asia. National leaders of palliative care were asked to describe developments in postgraduate education in their region. They were asked whether the introduction of a European curriculum would be useful in their country. The aim was to explore the structures of postgraduate education at country level in order to define the barriers and opportunities.
Methods
This is an ethnographic study based on semi-structured field interviews. A thematic analysis was chosen for data extraction and a narrative synthesis for the systematic presentation and critical discussion of the results.
Results
Thirty-two interviews were recorded in 23 countries. The analysis revealed 4 main themes: (1) general barriers to access, (2) necessary to improve palliative care education, (3) palliative care core curriculum – the theoretical framework, and (4) challenges in implementation. These main themes were complemented by 19 subthemes.
Significance of results
Palliative care is understood as a universal idea, which in practice means accepting social pluralism and learning to respect unique individual needs. This makes teaching palliative care a very special task because there are no golden standards for dealing with each individual as they are. In theory, a European curriculum recommendation is useful to convince governments and other key stakeholders of the importance of postgraduate education. In practice, such a curriculum needs to be adapted to the constraints of health services and human resources. Validated quality assessment criteria for palliative care education are crucial to advance postgraduate education.
Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, “narstaende.se,” from the perspective of spouses of patients receiving specialized home care.
Methods
A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.
Results
Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend “narstaende.se” to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.
Significance of results
A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website’s potential to provide support and increase preparedness for family caregivers in general.
The demand of palliative care is increasing due to the aging population and treatment hesitancy or intentional avoidance compromises symptom management.
Objectives
To identify patient beliefs associated with medication hesitancy by using the theory of planned behavior (TPB) namely, attitudes, subjective norms, behavioral intention, and perceived behavioral control associated with medication hesitancy or intentional noncompliance by avoidance.
Methods
The Preferred Reporting Items for Systematic Reviews and Meta-Analysis guideline was followed to conduct a systematic literature search involving the CINAHL, Embase, MEDLINE, and PsycINFO databases from inception until March 2022. Hand-searched articles from reference lists and gray literature were included. Thematic analysis was conducted on qualitative data and triangulated with quantitative data.
Results
About 554 articles were retrieved from the literature search and 17 articles were included based on the eligibility criteria. Three subthemes that were identified under TPB constructs were attitude: negative attitude toward medications, passive attitude toward illness and inaccurate information about disease or medication; one subtheme was identified under subjective norms: perceived negative opinions from others; and one subtheme was identified under perceived behavioral control: perception of manageable symptoms. Quantitative data provided triangulation of qualitative findings related to fear of addiction and side effects, feelings of hopelessness, unclear direction and information, social stigma, endurable symptoms, and illness as determinants for medication avoidance.
Significance of results
This systematic review highlighted some patient beliefs related to medication hesitancy or avoidance. Clinicians should take patient beliefs and concerns into consideration when creating treatment regimens for people receiving palliative care to optimize medication adherence and the quality of care.
To provide appropriate palliative care, nurses should have appropriate level of self-efficacy in palliative care, but the levels among nurses were low. To improve the levels effectively, self-efficacy in palliative care should be assessed using reliable and valid instruments. The purpose of this study was to examine the reliability and validity of the Self-Efficacy in Palliative Care Scale in Korean nurses.
Methods
In this cross-sectional, observational study, 272 nurses (mean age: 30 years) were enrolled from 6 university-affiliated medical centers or community hospitals in South Korea. Data on self-efficacy and demographic characteristics were collected. Validity was assessed by exploratory and confirmatory factor analyses (SPSS and Mplus). Reliability and homogeneity were assessed by Cronbach’s alpha and item analyses (SPSS), respectively.
Results
The exploratory and confirmatory factor analyses supported the 4-factor structure (communication, assessment and symptom management, psychosocial and spiritual management of patient and family, and multiprofessional teamworking) with factor loadings >.60 and with good model fit: root mean square error of approximation =.07, Tucker–Lewis index =.94, comparative fit index =.95, and standardized root mean square residual =.04. Cronbach’s alphas for the total scale and each of the subscales ranged from .883 to .965. The corrected item–total correlation coefficients of all items ranged from .61 to .90.
Significance of results
The findings of this study supported the reliability and validity of this instrument among Korean nurses. This instrument can be used to assess nurses’ self-efficacy in palliative care and to test intervention effects on it.
There are few studies evaluating the role of spirituality and the role of spiritually integrated interventions in people with amyotrophic lateral sclerosis (PALS) and their caregivers.
Objectives
A scoping review was conducted to examine the nature and breadth of peer-reviewed literature on the role of spirituality, interventions integrating spirituality, and outcomes for PALS and their caregivers.
Methods
A literature review was performed, following the methods from the Joanna Briggs Institute Reviewers, based on all articles published between January 2006 and April 2022, identified in the CINAHL Complete, MEDLINE Complete, MedicLatina, Psychology and Behavioral Sciences Collection, and SPORTDiscus with full-text databases using key terms. Extracted data included research aims, study design, population and characteristics, theme description, and measures or type of intervention.
Results
A total of 18 articles were included in this study: 14 qualitative, 3 quantitative, and 1 protocol of a quantitative study. Eight studies were based in Europe. The search identified different main themes related to spirituality for caregivers and patients, 2 spiritual measure scales, and one intervention. However, many studies were limited in sample size, generalizability, and transferability and used less sophisticated research designs.
Significance of the results
This scoping review illustrates the importance given to spirituality by caregivers and PALS and reveals a very heterogeneous response. Thus, experimental studies in the area of spirituality are needed to systematically explore the impact of spiritual interventions, and the results of these studies could advance practice and policy by enhancing the quality of life for PALS and their caregivers.
This study examined the effects of compassion-based intervention on mental health in cancer patients by using systematic review and meta-analysis of randomized controlled trials (RCTs).
Methods
Eleven bibliographic databases were searched from their earliest data available date up to March 1, 2022. The databases were PubMed, CINAHL, MEDLINE, PsycINFO, WOS, Cochrane, Embase, Scopus, ProQuest Dissertations, Airiti Library, and the National Digital Library of Theses and Dissertations in Taiwan.
Results
Ten studies from 2015 to 2021 were included with a total of 771 cancer patients. Most were targeted at women with breast cancer. Brief compassion-based interventions of approximately 30 minutes were conducted by audio file, paper, and web-based self-guided writing prompts. Most were conducted after the completion of active treatment. Anxiety was the most measured outcome. Constructive compassion-based interventions with 4- to 12-week sessions were conducted by a trained facilitator. Most were conducted for patients who had undergone treatment, and depression was the most measured outcome. The meta-analysis indicated that compassion-based interventions had a significant effect of reducing depression and increasing self-compassion. Moderation analysis indicated that constructive intervention showed more benefits of increased self-compassion than brief intervention. Both face-to-face and non-face-to-face web-delivered formats had benefits for increasing self-compassion compared with the control condition.
Significance of results
Compassion-based interventions might provide an effective strategy for improving self-compassion and depression among patients with breast cancer. Suggestions for further research and health-care providers follow.
Palliative sedation (PS) is an intrusive measure to relieve patients at the end of their life from otherwise untreatable symptoms. Intensive discussion of the advantages and limitations of palliative care with the patients and their relatives should precede the initiation of PS since PS is terminated by the patient’s death in most cases. Drugs for PS are usually administered intravenously. Midazolam is widely used, either alone or in combination with other substances. PS can be conducted in both inpatient and outpatient settings; however, a quality analysis comparing both modalities was missing so far.
Patients and methods
This prospective observational study collected data from patients undergoing PS inpatient at the palliative care unit (PCU, n = 26) or outpatient at a hospice (n = 2) or at home (specialized outpatient palliative care [SAPV], n = 31) between July 2017 and June 2018. Demographical data, indications for PS, and drug protocols were analyzed. The depth of sedation according to the Richmond Agitation Sedation Scale (RASS) and the degree of satisfaction of staff members and patient’s relatives were included as parameters for quality assessment.
Results
Patients undergoing PS at the PCU were slightly younger compared to outpatients (hospice and SAPV combined). Most patients suffered from malignant diseases, and midazolam was the backbone of sedation for inpatients and outpatients. The median depth of sedation was between +1 and −3 according to the RASS with a trend to deeper sedation prior to death. The median degree of satisfaction was “good,” scored by staff members and by patient’s relatives. Significant differences between inpatients and outpatients were not seen in protocols, depth of sedation, and degree of satisfaction.
Conclusion
The data support the thesis that PS is possible for inpatients and outpatients with comparable results. For choosing the best place for PS, other aspects such as patient’s and relative’s wishes, stress, and medical reasons should be considered.