Being given a new diagnosis, living with serious illness, going through the dying process, and grieving all clearly will have a large impact on a patient’s emotional and psychiatric health. For Physician Assistants working in diverse settings, including primary care, oncology, cardiology, and other specialties, fluency in psychiatric issues in the seriously ill or dying patient is a necessity to providing holistic care. The Physician As-sistant has the opportunity to identify psychiatric issues and be proactive about a team-based approach to therapeutic interventions. Many patients appropriate for palliative care can have a psychological overlap in how they face disease, cope with treatments, interact with family, and ultimately view death. In the health care setting, there can be a tendency to separate the physical symptoms of disease and treatments; however, they are intimately intertwined with the mental, psychological,and spiritual aspects of care. Mental health impacts not only the individual patient but also caregivers and families of those with serious illness
Background: When family caregivers are involved in patient care, both patients and caregivers experience better clinical outcomes. However, caregivers experience communication difficulties as they navigate a complex health care system and interact with health care providers. Research indicates that caregivers experience a communication burden that can result in topic avoidance and distress; however, little is known about how burden stemming from communication difficulties with health care providers relates to caregiving outcomes.
Objectives: To investigate how family caregiver communication difficulties with health care providers influence caregiver quality of life and anxiety.
Methods: Data were collected in a cross-sectional online survey of 220 caregivers with communication difficulties resulting from caregiver avoidance of caregiving-related topics, inadequate reading and question-asking health literacy, and low communication self-efficacy.
Results: Caregiver outcomes were not affected by reading health literacy level but did differ based on question-asking health literacy level. Adequate question-asking health literacy was associated with lower anxiety and a higher quality of life. Caregivers who avoided discussing caregiving topics reported higher anxiety and lower quality of life and caregivers with increased communication self-efficacy reported a higher quality of life.
Conclusion: Involvement of family caregivers in care is likely to require tailored approaches that address caregiver communication and health literacy skills. Findings from this study suggest that hospice and palliative care providers should identify and provide support for caregiver communication difficulties in order to positively influence caregiver quality of life and anxiety.
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
In the partnership between the medical departments of Würzburg University, Germany, and Nagasaki University, Japan, palliative care is a relevant topic. The aim of the study was to perform a comparative analysis of the hospital-based palliative care teams in Würzburg (PCT-W) and Nagasaki (PCT-N). Survey of staff composition and retrospective analysis of PCT patient charts in both PCTs were conducted. Patients self-assessed their symptoms in PCT-W and in Radiation Oncology Würzburg (RO-W). The (negative) quality indicator 'percentage of deceased hospitalised patients with PCT contact for less than 3 days before death' (Earle in Int J Qual Health Care 17(6):505-509, 2005) was analysed. Both PCTs follow a multidisciplinary team approach. PCT-N saw 410 cancer patients versus 853 patients for PCT-W (22.8% non-cancer patients). The Eastern Cooperative Oncology Group Performance Status at first contact with PCT-N was 3 or 4 in 39.3% of patients versus 79.0% for PCT-W. PCT-N was engaged in co-management longer than PCT-W (mean 20.7 days, range 1-102 versus mean 4.9 days, range 1-48). The most frequent patient-reported psychological symptom was anxiety (family anxiety: 98.3% PCT-W and 88.7% RO-W, anxiety 97.9% PCT-W and 85.9% RO-W), followed by depression (98.2% PCT-W and 80.3% RO-W). In 14 of the 148 deceased patients, PCT-N contact was initiated less than 3 days before death (9.4%) versus 121 of the 729 deceased PCT-W patients (16.6%). Psychological needs are highly relevant in both Germany and Japan, with more than 85% anxiety and depression in patients in the Japanese IPOS validation study (Sakurai in Jpn J Clin Oncol 49(3):257-262, 2019). This should be taken into account when implementing PCTs.
Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs.
Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress (“unable to converse for a period of time”), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale.
Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%.
Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.
Objectives: Palliative care workers have continuous exposure to the emotionally draining effects of pain, suffering, death, grief, and mourning. Burnout syndrome is common among these individuals who accompany patients on the way to death. This study evaluated burnout, stress, anxiety, and depression among care givers.
Methods: A total of 47 individuals working in palliative care units or internal disease and neurology clinics participated in the study. The participants were divided into 2 groups: palliative care workers (Group P) and workers in internal disease and neurology clinics (Group A). All of the participants completed the Maslach Burnout Inventory, the Beck anxiety and depression scales, and the Stress Appraisal Measure.
Results: A total of 47 healthcare workers agreed to complete the scales. Emotional burnout and desensitization scores were found to be elevated, and personal success scores were low in both groups. The Beck Anxiety Inventory revealed findings of moderate anxiety in both groups, while cognitive-sensorial, physiological, and pain complaints, as well as signs of stress, were more pronounced in Group A.
Conclusion: Burnout is a significant problem among healthcare workers and signs of stress and cognitive-sensorial, physiological, and pain complaints are particularly common among those working in palliative care units. Structural arrangements aimed at addressing the causes of burnout could positively affect the well-being of healthcare workers.
Objective: To investigate the clinical implications of sleep quality, anxiety and depression in patients with advanced lung cancer (LC) and their family caregivers (FCs).
Methods: A total of 98 patients with advanced LC and their FCs (n=98) were recruited from the Oncology Department in Nanfang Hospital. The Pittsburgh Sleep Quality Index (PSQI), consisting of seven components that evaluate subjective sleep quality, sleep latency, duration of sleep, sleep efficiency, sleep disturbances, sleep medication usage and daytime dysfunction, was used to assess sleep quality. Using the tool of Zung Self-rating Anxiety Scale (SAS) and Zung Self-rating Depression Scale (SDS), we tested the patients’ status of anxiety and depression, respectively.
Results: The prevalences of poor sleep quality, anxiety and depression in patients were 56.1%, 48.9% and 56.1%, respectively, while those in FCs were 16.3%, 32.6% and 25.5%, respectively. Patients had higher PSQI, SAS and SDS scores than did FCs (p<0.05). Significant correlations were found between the patients’ and FCs’ scores of PSQI/SAS/SDS (p<0.05). Multivariate Cox regression analyses indicated that sleep disturbances in patients (HR 0.413, 95% CI 0.21 to 0.80, p=0.01) and the global PSQI score of FCs (HR 0.31, 95% CI 0.14 to 0.71, p=0.00) were independent risk factors for patients’ first-line progression-free survival (PFS). Moreover, patients’ sleep latency (HR 2.329, 95% CI 1.36 to 3.96, p=0.00) and epidermal growth factor receptor mutations (HR 1.953, 95% CI 1.12 to 3.38, p=0.01) were significant prognostic factors for their overall survival (OS).
Conclusions: We demonstrated that presence of sleep disturbances in patients with advanced LC and the global PSQI Score of their FCs may be risk predictors for patients’ poor first-line PFS. Patients’ sleep latency was a potential risk factor for their OS.
The psychodynamic treatment of dying cancer patients is a relatively neglected area in practice and the literature. Death anxiety in these patients often results in countertransferences that lead therapists to exclude dying patients for treatment or avoid discussing their patients' concerns about dying. This article offers the reader an exposure to a clinician's immersion in the psychodynamic treatment of cancer patients for over 40 years and offers recommendations that meet the needs of patients facing death. Interventions that may lessen the patient's death anxiety and the therapist's countertransferences include: advocating for the patient's quality of life, taking a common sense approach to denial, helping the patient accept “uncertainty” regarding prognosis, providing a flexible approach that includes support and medication, validating the patient's life contributions, elevating the patient's self-esteem, and exploring the patient's concerns about dying. In addition, the article will also provide many case examples of meaningful psychotherapeutic work at the end of life, including mastering longstanding psychological conflicts, forgiving oneself for past mistakes, establishing a legacy, and healing relationships.
At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.
CONTEXT: Death anxiety is common in patients with metastatic cancer, but its relationship to brain metastases and cognitive decline is unknown. Early identification of death anxiety and its determinants allows proactive interventions to be offered to those in need.
OBJECTIVE: To identify psychological, physical and disease-related (including brain metastases, cognitive impairment) factors associated with death anxiety in mNSCLC patients.
METHODS: A cross-sectional pilot study with mNSCLC outpatients completing standardized neuropsychological tests and validated questionnaires measuring death anxiety, cognitive concerns, illness intrusiveness, depression, demoralization, self-esteem, and common cancer symptoms. We constructed a composite for objective cognitive function (mean neuropsychological tests z-scores).
RESULTS: Study measures were completed by 78 patients (50% female, median age: 62 years (range:37-82)). Median time since mNSCLC diagnosis was 11 months (range:0-89); 53% had brain metastases. At least moderate death anxiety was reported by 43% (n=33). Objective cognitive impairment was present in 41% (n=32) and perceived cognitive impairment in 27% (n=21). Death anxiety, objective, and perceived cognitive impairment did not significantly differ between patients with and without brain metastases. In univariate analysis, death anxiety was associated with demoralization, depression, self-esteem, illness intrusiveness, common physical cancer symptoms, and perceived cognitive impairment. In multivariate analysis, demoralization (p<0.001) and illness intrusiveness (p=0.001) were associated with death anxiety.
CONCLUSION: Death anxiety and brain metastases are common in mNSCLC patients, but not necessarily linked. The association of death anxiety with both demoralization and illness intrusiveness highlights the importance of integrated psychological and symptom management. Further research is needed on the psychological impact of brain metastases.
This study aimed to evaluate the validity and reliability of the Persian version of Death Anxiety Scale-Extended (DAS-E). A total of 507 patients with end-stage renal disease completed the DAS-E. The factor structure of the scale was evaluated using exploratory factor analysis with an oblique rotation and confirmatory factor analysis. The content and construct validity of the DAS-E were assessed. Average variance extracted, maximum shared squared variance, and average shared squared variance were estimated to assess discriminant and convergent validity. Reliability was assessed using Cronbach’s alpha coefficient (a = .839 and .831), composite reliability (CR = .845 and .832), Theta ( = .893 and .867), and McDonald Omega (O = .796 and .743). The analysis indicated a two-factor solution. Reliability and discriminant validity of the factors was established. Findings revealed that the present scale was a valid and reliable instrument that can be used in assessment of death anxiety in Iranian patients with end-stage renal disease.
Purpose: The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care.
Design and Methods: The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale.
Findings: The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38.
Practice Implications: Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.
BACKGROUND: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care.
OBJECTIVE: Conduct a MT intervention to determine intervention acceptability and initial effects on ratings of pain, worry reduction, and quality of life.
DESIGN: Pre-post single group pilot study.
SETTING/SUBJECTS: Eight children with cancer (age 10-17) and one of their parents were recruited from a palliative care service.
PROCEDURE/MEASUREMENTS: Baseline (one week prior to intervention): demographics, MT expectations, QOL, and pain measures. Intervention (one month): MT was provided once per week, with children's pain and worry ratings occurring immediately before and after each MT session. Follow Up (4-6 weeks after baseline): QOL, pain, and MT/study acceptability questionnaires.
RESULTS: Participants reported significant decreases in pain following two MT sessions, and worry following one session. No significant changes in pain symptoms and QOL were found between baseline and follow up. Participants positively endorsed the study and the MT intervention, and there were no adverse effects reported.
CONCLUSIONS: MT may lead to immediate decreases in pain and worry in children with cancer who are receiving palliative care, however the effects may not be sustained long term. Difficulties regarding protocol feasibility including recruitment and study compliance remain important considerations for future work.
Background: Adults with metastatic cancer frequently report anxiety and depression symptoms, which may impact health behaviors such as advance care planning (ACP).
Objective: The study leveraged acceptance and commitment therapy (ACT), an evidence-based approach for reducing distress and improving health behaviors, and adapted it into a multimodal intervention (M-ACT) designed to address the psychosocial and ACP needs of anxious and depressed adults with metastatic cancer. The study evaluated M-ACT's acceptability, feasibility, and efficacy potential.
Design: The study was designed as a single-arm intervention development and pilot trial.
Setting/Subjects: The trial enrolled 35 anxious or depressed adults with stage IV cancer in community oncology clinics, with a referred-to-enrolled rate of 69% and eligible-to-enrolled rate of 95%.
Measurements: M-ACT alternated four in-person group sessions with three self-paced online sessions. Acceptability and feasibility were assessed through enrollment, attendance, and satisfaction ratings. Outcomes and theorized intervention mechanisms were evaluated at baseline, midintervention, postintervention, and two-month follow-up.
Results: Participant feedback was used to refine the intervention. Of participants starting the intervention, 92% completed, reporting high satisfaction. One-quarter did not begin M-ACT due to health declines, moving, or death. Completers showed significant reductions in anxiety, depression, and fear of dying and increases in ACP and sense of life meaning. In this pilot, M-ACT showed no significant impact on pain interference. Increases in two of three mechanism measures predicted improvement on 80% of significant outcomes.
Conclusions: The M-ACT intervention is feasible, acceptable, and shows potential for efficacy in community oncology settings; a randomized trial is warranted.
Background: Idiopathic pulmonary fibrosis (IPF) is a fatal disease that results in poor quality of life due to progressive respiratory symptoms, anxiety, and depression. Palliative care improves quality of life and survival in other progressive diseases. No randomized controlled trials have investigated the impact of palliative care on quality of life, anxiety, or depression in IPF.
Methods: We conducted a randomized, controlled, pilot study to assess the feasibility of measuring the effect of a palliative care clinic referral on quality of life, anxiety, and depression in IPF. Patients were randomized to usual care (UC) or usual care + palliative care (UC + PC) with routine pulmonary follow up at 3 and 6 months. The UC + PC group received a minimum of one PC clinic visit. Primary outcome was change from baseline in quality of life, anxiety, and depression as measured by the St. George’s Respiratory Questionnaire (SGRQ), the Hospital Anxiety and Depression Index (HADS), and the Patient Health Questionnaire (PHQ-9) at 6 months.
Results: Twenty-two patients were randomized between September 2017 through July 2018; 11 to UC and 11 to UC + PC. There was no difference in the change in SGRQ score at 3 months or 6 months, however, the symptom score trended towards a significant worsening for UC + PC at both 3 and 6 months (mean change at 3 months for UC and UC + PC was - 7.8 and + 10.7, respectively, p = 0.066; mean change at 6 months for UC and UC + PC was - 6.0 and + 4.6, respectively, p = 0.055). There was no difference in the change in HADS anxiety or depression scores. There was a significant transient worsening in PHQ-9 scores for UC + PC at 3 months (UC: -1.6, UC + PC: + 0.9, p = 0.008); this effect did not persist at 6 months.
Conclusion: This pilot study demonstrated that a randomized controlled trial of palliative care in idiopathic pulmonary fibrosis patients is feasible. Receiving palliative care did not lead to improved quality of life, anxiety, or depression compared to usual care after 6 months. Patients in the UC + PC group trended towards worsening symptoms and a small but statistically significant transient worsening in depression. These findings should be interpreted with caution, and need to be evaluated in adequately powered clinical trials. NCT03981406, June 10, 2019, retrospectively registered.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
This study aims to investigate the relationship between death anxiety of the Turkish nurses and their attitudes toward the dying patient. This study involved 203 nurses who were working at a university hospital. The data were collected using “Nurse Information Form” (which was prepared by the authors of this research), “Thorson-Powell Death Anxiety Scale,” and “Attitude Scale about Euthanasia, Death, and Dying Patient.” There was a positive correlation between death anxiety and dying patient avoidance behavior and euthanasia score (p < .05). The findings showed that nurses, death anxiety, and death scores were high in the loss of a close relatives (p < .05). Our findings suggest that the situation of the dying patients and their families and also nurses should be improved. Thus, special psychological education/training should be given to the nurses to deal with death anxiety and their attitude to the dying patient.
This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
Background: Dignity is a vitally important aspect of the lives of advanced cancer patients. We conducted a systematic review and meta-analysis of the effectiveness of dignity therapy in this patient population.
Methods: We searched for randomized controlled trials comparing dignity therapy versus standard care for patients with advanced cancer in five comprehensive databases (March 2019), two clinical trial registries and one gray literature database (August 2019). The quality of the studies was assessed using the risk of bias tool recommended by the Cochrane Handbook Version 5.1.0. We used GRADE approach to assess the certainty of evidence. Meta-analysis was performed with RevMan version 5.3. Outcomes of interest included anxiety, depression, dignity-related distress and quality of life (QoL).
Results: Ten trials evaluating 904 patients (control, 449; experimental, 455) were identified. Six trials included patients with different types of advanced cancer, and four trials included patients with a single advanced cancer (lung cancer [20%], breast cancer [10%], and hepatocellular carcinoma [10%]). Compared with the standard care, dignity therapy decreased the score of anxiety, depression, and dignity-related distress of the advanced cancer patients (SMD = -1.07, 95% CI: [-1.57, -0.58], p < .05; SMD = -1.31, 95% CI: [-1.92, -0.70], p < .05; MD = -7.30, 95% CI: [- 12.04, - 2.56], p < .05). In addition, no significant differences were found in the patient's QoL (p > .05).
Conclusion: Very low certainty evidence demonstrated that dignity therapy might be a promising treatment, especially in reducing anxiety and depression in advanced cancer patients.
The use of multidimensional scales for assessing fear of death among nursing students can assist in teaching and evaluating the effectiveness of targeted training in thanatology. Research has demonstrated good psychometric characteristics of the Czech version of the Collett–Lester Fear of Death Scale (CL-FODS). It was applied to nursing students (N = 256), who reported as their biggest fear the process of their own dying. Greater fear of death and dying was found in students who had no experience of the dying and death of a loved one. Good internal consistency was achieved for the four subscales of the Czech CL-FODS.