Objective: The objective of this study was to assess the psychosocial distress and associated factors in advanced cancer patients consulting at the outpatient Palliative Care Unit at the National Cancer Institute in Mexico City.
Design: A retrospective study was conducted using electronic records (June 2015 to December 2016).
Sample: A total of 646 patients with advanced cancer during their first visit to the outpatient palliative care unit at the National Cancer Institute in Mexico were evaluated using the Distress Thermometer (DT) and ECOG performance status scores.
Findings: Overall, 62% were women, with a median age of 57 years, and married (54.8%). The most frequent diagnosis was gastrointestinal cancer (28.6%), and 38.9% had a functional performance status of ECOG 2. The median DT score was 4.0 (IQR = 2–6), with 56% reporting DT scores =4. The three most frequent problems =4 were sadness (82.6%), feeling weak (81.2%), worry (79.6%), and <4 were feeling weak (57.7%), fatigue (55.6%), and financial security (52.1%). The variables associated with distress according to the multiple logistic regression analysis were problems with housing (OR = 2.661, 95% CI = 1.538–4.602), sadness (OR = 2.533, 95% CI = 1.615–3.973), transportation (OR = 1.732, 95% CI = 1.157–2.591), eating (OR = 1.626, 95% CI = 1.093–2.417), nervousness (OR = 1.547, 95% CI = 1.014–2.360), and sleep (OR = 1.469, 95% CI = 1.980–2.203).
Conclusion: The principal factors were related to distress levels, housing problems, transportation issues, and emotional problems such as sadness, nervousness, lower functionality, and younger age. Therefore, psychosocial support is of considerable relevance in palliative care. These findings will help clinicians understand the distress of patients with advanced cancer in palliative care in Latin American countries.
Objectives: Palliative care (PC) has gained rising attention in a holistic treatment approach to chronic heart failure (HF). It is unclear whether there is a need for PC in left ventricular assist device (LVAD) patients or heart transplant recipients.
Methods: In a cross-sectional explorative pilot study, outpatients after heart transplantation (HTx, n = 69) or LVAD implantation (n = 21) underwent screening for palliative care (PC) need and evaluation of symptom burden and psychological distress using tools that emanated from palliative cancer care.
Results: The ‘Palliative Care Screening Tool for Heart Failure Patients’ revealed scores of 4.3 ± 2.2 in HTx and 6.0 ± 2.1 in LVAD patients (max. 12 points, P = 0.003), indicating the need for PC (=5 points) in 32% of HTx and 67% of LVAD patients. Symptom burden, as assessed by MIDOS (‘Minimal Documentation System for Palliative Care’) scores was substantial in both groups (4.9 ± 4.7 in HTx vs 6.6 ± 5.3 in LVAD, max. 30 points, P = 0.181). ‘Fatigue’, ‘weakness’ and ‘pain’ were the most frequent symptoms. Using the ‘Distress-Thermometer’, ‘clinically relevant’ distress was detected in 57% of HTx and 47% of LVAD patients (P = 0.445). In the PHQ-4 (‘4-Item Patient Health Questionnaire’), 45% of LVAD patients, compared to only 10% of HTx patients, reported mild symptoms of anxiety and depression.
Conclusions: Findings reveal substantial need for PC in LVAD patients and, to a lesser extent, in heart transplant recipients, suggesting that multi-disciplinary PC should be introduced into routine aftercare.
COVID-19 has truly affected most of the world over the past many months, perhaps more than any other event in recent history. In the wake of this pandemic are patients, family members, and various types of care providers, all of whom share different levels of moral distress. Moral conflict occurs in disputes when individuals or groups have differences over, or are unable to translate to each other, deeply held beliefs, knowledge, and values. Such conflicts can seriously affect healthcare providers and cause distress during disastrous situations such as pandemics when medical and human resources are stretched to the point of exhaustion. In the current pandemic, most hospitals and healthcare institutions in the United States have not allowed visitors to come to the hospitals to see their family or loved ones, even when the patient is dying. The moral conflict and moral distress (being constrained from doing what you think is right) among care providers when they see their patients dying alone can be unbearable and lead to ongoing grief and sadness. This paper will explore the concepts of moral distress and conflict among hospital staff and how a system-wide provider wellness programme can make a difference in healing and health.
CONTEXT: Fatigue is the most commonly reported symptom in life-limiting illnesses, though not much is known about the distress it causes patients as they approach death.
OBJECTIVES: To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death.
METHODS: A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between 1 July 2013 and 31 December 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status.
RESULTS: A total of 116,604 patients from 203 specialist palliative care services were analysed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and non-malignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced.
CONCLUSIONS: Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority.
Background: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications.
Aims: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice.
Design: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted.
Results: 297 dyads recruited; control (n = 153) and intervention (n = 144). The intervention group demonstrated significantly lower psychological distress (Diff: –1.68, p < 0.01) and higher preparedness (Diff: 3.48, p = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures.
Conclusions: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications.
Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583
BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.
CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.
CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
BACKGROUND: Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers.
METHODS: Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regression models, and comparative quali-quantitative analyses were carried out.
RESULTS: Data show that the great majority of patients with COPD spend years with this diagnosis, and have been admitted to the hospital several times in advance stage of illness the previous year of the moment of end-of-life stage. Furthermore, only a tiny percentage of the patients were functionally independent in the advanced stage of illness.
CONCLUSIONS: The emotional distress and the burden of the family caregiver play an essential role in the distress of the patient, in conjunction with the patient's own functional independence and the time living with the disease, and comorbidity. On the other hand, variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity, functional dependence, and emotional distress, play an important role in the family caregiver's emotional distress and burden. Understanding how these variables are related is key to designing appropriate programs to reduce the emotional distress the patients with COPD at the end of life and their family caregivers.
CONTEXT: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
OBJECTIVE: Examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common, distressing patient symptoms near the end of life.
METHODS: Secondary analysis of prospective, cohort study of 169 patients with advanced cancer and their family caregivers were analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g. home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
RESULTS: Hospice care was significantly, positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 versus 8.96; psychological responses: 29.85 versus 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and were associated with the most fear and helplessness among caregivers.
CONCLUSION: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to "scary" patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common, distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.
BACKGROUND: Moral distress is a state in which a clinician cannot act in accordance with their ethical beliefs because of external constraints. Physician trainees, who work within rigid hierarchies and who lack clinical experience, are particularly vulnerable to moral distress. We examined the dynamics of physician trainee moral distress in end-of-life care by comparing experiences in two different national cultures and healthcare systems.
OBJECTIVE: We investigated cultural factors in the US and the UK that may produce moral distress within their respective healthcare systems, as well as how these factors shape experiences of moral distress among physician trainees.
DESIGN: Semi-structured in-depth qualitative interviews about experiences of end-of-life care and moral distress.
PARTICIPANTS: Sixteen internal medicine residents in the US and fourteen junior doctors in the UK.
APPROACH: The work was analyzed using thematic analysis.
KEY RESULTS: Some drivers of moral distress were similar among US and UK trainees, including delivery of potentially inappropriate treatments, a poorly defined care trajectory, and involvement of multiple teams creating different care expectations. For UK trainees, healthcare team hierarchy was common, whereas for US trainees, pressure from families, a lack of guidelines for withholding inappropriate treatments, and distress around physically harming patients were frequently cited. US trainees described how patient autonomy and a fear of lawsuits contributed to moral distress, whereas UK trainees described how societal expectations around resource allocation mitigated it.
CONCLUSION: This research highlights how the differing experiences of moral distress among US and UK physician trainees are influenced by their countries' healthcare cultures. This research illustrates how experiences of moral distress reflect the broader culture in which it occurs and suggests how trainees may be particularly vulnerable to it. Clinicians and healthcare leaders in both countries can learn from each other about policies and practices that might decrease the moral distress trainees experience.
Yoga was developed >5,000 years ago as a comprehensive system of health and well-being for the mind, body, and soul. The word is believed to derive from the Sanskrit root "yuj" meaning to bind, yoke, union, and/or to concentrate one's attention. In health care, it often serves as a complementary mind-body practice, and it is increasingly being integrated into cancer care. It can be performed in the privacy of one's home through DVD or web-based programs or through group practices led by instructors who are often experienced working with students with medical issues. Most published evidence regarding yoga for seriously ill patients involves breast cancer survivors or breast cancer (stages I-IV) patients undergoing cancer treatment with a preserved functional capacity (ECOG <3). There is limited data examining its effectiveness or feasibility in children or for those with terminal cancer.
Background: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear.
Aim: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting.
Design: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale.
Setting/Participants: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures.
Results: The area under the curve was optimal using a Distress Thermometer cut-off score of >=6 for total distress and for anxiety, and a cut-off score of >=4 optimal when screening for depression.
Conclusions: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of >=5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.
OBJECTIVES: Family conflict and family functioning were regarded as changeable factors associated with complicated grief (CG) and major depressive disorder (MDD) in the bereaved families of patients with advanced cancer, although the evidence is limited. We explored the family functioning associated with CG and MDD developing either independently or co-morbidly in the bereaved families of patients with advanced cancer who died in palliative care units (PCUs).
METHODS: This study comprised a nationwide cross-sectional questionnaire survey of bereaved family members of cancer patients who died in Japanese PCUs participating in evaluation of the quality of end-of-life care.
RESULTS: A total of 529 questionnaires (69.2%) were returned, and we analyzed a total of 458 responses. A total of 14.2% of participants were considered as having CG, 22.5% as having moderate to severe depression, and 9.6% as having co-morbid symptoms. Multivariate logistic regression analysis revealed that many family members insulted or yelled at one another (odd ratio (OR): 2.99, p=0.046; OR:2.57, p=0.033), and conflict regarding what is meant by a good death (OR:3.60, p=0.026; OR:4.06, p=0.004) was significantly positively associated with CG, MDD, and co-morbid symptom.
CONCLUSIONS: Specific family conflicts may increase the incidence of CG, MDD, and co-morbid symptoms in the bereaved families of patients with advanced cancer. Our results may encourage health care providers to approach discussions about end-of-life issue with the patient and their family in advance, especially focusing on what is considered a good death for the patient, which may prevent or resolve the family conflict.
BACKGROUND: Individuals caring for patients with advanced cancer ("caregivers") experience psychological distress during the patient's illness course. However, data on the prevalence of bereaved caregivers' psychological distress and its relationship with the quality of patient's EOL care are limited.
METHODS: We conducted a secondary analysis of 168 caregivers enrolled in a supportive care trial for patients with incurable lung and gastrointestinal cancers and their caregivers. We used the Hospital Anxiety and Depression Scale (HADS) to assess caregivers' depression and anxiety symptoms at three months after the patient's death. Caregivers also rated the patient's physical and psychological distress in the last week of life on a 10-point scale three-months after the patient death. We used linear regression adjusting for caregiver age, sex, randomization, and cancer type to explore the relationship between bereaved caregivers' depression and anxiety symptoms and their ratings of physical and psychological distress in patients at the EOL.
RESULTS: Of the 168 bereaved caregivers, 30.4% (n=51) and 43.4% (n=73) reported clinically significant depression and anxiety symptoms, respectively. Caregiver ratings of worse physical (B=0.32, P=0.009) and psychological (B=0.50, P<0.001) distress experienced by the patient at the EOL were associated with worse depression symptoms in bereaved caregivers. Only caregiver rating of worse psychological distress experienced by the patient at the EOL (B=0.42, P<0.001) was associated with worse bereaved caregivers' anxiety symptoms.
CONCLUSION: Many bereaved caregivers of patients with advanced cancer experience symptoms of depression and anxiety, which are associated with their perceptions of distress in their loved ones at the EOL.
BACKGROUND: A sense of place (SOP) is defined as the emotional bonds, values, meaning, and symbols attached to a place.
AIMS: To assess SOP of patients with cancer during end-of-life care at home (home-hospice service) versus at a hospital in relation to place of care, social support, and emotional distress.
METHODS: Participants were 150, stage IV, cancer patients with a life expectancy of less than 6 months, as defined by oncological staff, who were not receiving any life-prolonging care. Seventy-five patients received care at home (home-hospice), and the other 75 received care at the oncology department at the hospital, by palliative unit staff. Participants completed the Brief Symptom Inventory anxiety and depression subscales, questionnaires on perceived support and both questionnaires on home SOP and hospital SOP.
RESULTS: Mean scores of emotional distress were similar for patients in home-hospice and at the hospital. Home SOP among individuals receiving care at home was high, and hospital SOP was high among hospitalized individuals. The structural equation model had good fit indexes, showing that each of the SOP variables mediated the association between place of care and emotional distress. Perceived support was associated with lower distress only in the hospital setting.
CONCLUSIONS: The SOP concept is relevant to understanding emotional distress in relation to place of care at end of life. Strengthening SOP in relation to place of care should be considered. As newly introduced concept regarding place of care at the end of life, SOP warrants further research.
Both non-rapid eye movements and rapid eye movements sleep facilitate the strengthening of newly encoded memory traces, and dream content reflects this process. Numerous studies evaluated the impact of diseases on dream content, with particular reference to cancer, and reported the presence of issues related to death, negative emotions, pain and illness. This study investigates death and illness experiences in 13 consecutive patients with sarcoma compared to paired controls, early after diagnosis, evaluating dream contents, fear of death, mood and anxiety, distress, and severity of disease perception (perceived and communicated). Ten patients and 10 controls completed the study. Dream contents were significantly different between patients and normative data (DreamSat) and patients and controls (higher presence of negative emotions, low familiar settings and characters and no success involving the dreamer). Illness and death were present in 57% of patients' dreams (0% among controls), but no differences emerged between patients and controls in regard to anxiety and depression, distress and fear of death, even if the severity of illness was correctly perceived. The appearance of emotional elements in dreams and the absence of conscious verbalization of distress and/or depressive or anxious symptoms by patients could be ascribed to the time required for mnestic elaboration (construction/elaboration phase) during sleep.
This study aims to analyse the impact that a psychological intervention programme has on the emotional state of family caregivers of patients at the end of life. The study is longitudinal with two arms (control and experimental). Data was collected from 154 primary family caregivers of patients at the end of life as well as from their respective 154 care-recipients. The intervention programme has shown its effectiveness in reducing anxiety, emotional distress and burden in the family caregivers of end-of-life patients. A reduction of anxiety of patients whose family caregivers participated in the intervention was also observed.
BACKGROUND: Patients receiving left ventricular assisted device (LVAD) require the expertise of specialty trained nurses referred to as VAD coordinators. The long-term use of these devices has created morally distressing situations for VAD coordinators.
OBJECTIVE: This pilot study sought to explore the association between ventricular assistance device (VAD) coordinators' unique roles and responsibilities and moral distress.
METHODS: An online survey was distributed to VAD coordinators through a listserv. The non-probability sample consisted of 36 nurses across the United States.
RESULTS: Bivariate analyses identified a number of areas of difference in respondent's levels of moral distress based on specific responsibilities associated with their role as a VAD coordinator.
CONCLUSION: These findings indicate team communication, competence, and location of VAD discontinuation may be important factors related to VAD coordinators' distress. Future research is needed with larger sample sizes and continued exploration of the impact of specialized training and curricula content.
CONTEXT: Advancing the science of serious illness communication requires methods for measuring characteristics of conversations in large studies. Understanding which characteristics predict clinically important outcomes can help prioritize attention to scalable measure development.
PURPOSE: To understand whether audibly recognizable expressions of distressing emotion during palliative care serious illness conversations are associated with ratings of patient experience or 6-month enrollment in hospice.
METHODS: We audio-recorded initial palliative care consultations involving 231 hospitalized people with advanced cancer at two large academic medical centers. We coded conversations for expressions of fear, anger and sadness. We examined the distribution of these expressions and their association with pre-post ratings of Feeling Heard & Understood and 6-month hospice enrollment following the consultation.
RESULTS: Nearly 6 in 10 conversations included at least one audible expression of distressing emotion (59%; 137/231). Among conversations with such an expression, fear was the most prevalent (72%; 98/ 137) followed by sadness (50%; 69/ 137) and anger (45%; 62/137). Anger expression was associated with more disease-focused end-of-life treatment preferences, pre-post consultation improvement in feeling heard & understood and lower 6-month hospice enrollment. Fear was strongly associated with pre-consultation patient ratings of shorter survival expectations. Sadness did not exhibit strong association with patient descriptors or outcomes.
CONCLUSION: Fear, anger and sadness are commonly expressed in hospital-based palliative care consultations with people who have advanced cancer. Anger is an epidemiologically useful predictor of important clinical outcomes.
CONTEXT: Palliative care referrals (PCR) improve symptom management, provide psychosocial and spiritual support, clarify goals of care and facilitate discharge planning. However, very late PCR can result in increased clinician distress and prevent patients and families from benefitting from the full spectrum of interdisciplinary care.
METHODS: Consecutive first-time inpatient PCR from September 1, 2013 to August 31, 2017 were identified to determine the frequency and predictors of referrals within 24 hours of death. We compared the clinical characteristics with a random sample of patients discharged alive or died more than 24 hours after first-time PCR as a control, stratified by year of consult in a 1:1 ratio.
RESULTS: Of 7,322 first-time PCR, 154 (2%) died within 24 hours of referral. These patients were older (p=0.003) and had higher scores for depression (p=0.0009), drowsiness (p=0.02) and shortness of breath (p=0.008) compared to a random sample of 153 patients discharged alive or died more than 24 hours after first-time PCR. Patients who received a PCR within 24 hours of death were more likely than the control group to have ECOG 4 (95% vs. 25%, p<0.0001), delirium (89% vs. 17%, p<0.0001), DNR code status (81% vs. 18%, p<0.0001), and hematologic malignancies (39% vs. 16%, p<0.0001). In the multivariate analysis, depression (OR 1.4, p=0.005), DNR code status (OR 9.1, p=0.003) and ECOG 4 (OR 9.8, p=0.003) were independently associated with first-time PCR within 24 hours of death.
CONCLUSION: While only a small proportion of first-time PCR occurred in the last 24 hours of life, the patients had a significant amount of distress, indicating a missed opportunity for timely palliative care intervention. These sentinel events call for specific guidelines to better support patients, families and clinicians during this difficult time. Further research is needed to understand how to minimize very late PCR.