Assessing Symptoms, Concerns, and Quality of Life in Noncancer Patients at End of Life: How Concordant Are Patients and Family Proxy Members?

CONTEXT: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers. OBJECTIVES: The objective of this study was to determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end of life. METHODS: Sample dyads included a mix of patients residing at home, in a nursing home, in a long-term care facility, or in hospice. Diagnoses included patients with amyotrophic lateral sclerosis (n = 75), chronic obstructive pulmonary disease (n = 52), end-stage renal disease (n = 42), and institutionalized, cognitively intact frail elderly (n = 49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care, and Graham and Longman's two-item Quality of Life Scale. RESULTS: Concordance was less than 70% for seven of the 25 PDI items, with the lowest concordance (65.1%) for the item "not being able to continue with my usual routines." For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the Structured Interview Assessment of Symptoms and Concerns in Palliative Care and Quality of Life Scales, the trend toward family members overreporting patient distress and poor quality of life continued. CONCLUSION: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step toward minimizing patient and family burden at end of life.

Correction: Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

[This corrects the article DOI: 10.1371/journal.pone.0147607.].

Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

OBJECTIVE: The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. DESIGN: A prospective, multi-site approach was used. SETTING: Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. PARTICIPANTS: Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. MAIN OUTCOME MEASURE: In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). RESULTS: Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4-11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. CONCLUSION: People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

Eliciting Personhood Within Clinical Practice: Effects on Patients, Families, and Health Care Providers.

CONTEXT: Failure to acknowledge personhood is often the cause of patient and family dissatisfaction. We developed the Patient Dignity Question (PDQ) as a simple means of inquiring about personhood: "What do I need to know about you as a person to give you the best care possible?" OBJECTIVES: This study aimed to evaluate the impact of the PDQ on patients and families, evaluate its influence on health care providers (HCPs), and determine if HCP characteristics mediate receptivity to PDQ-elicited information. METHODS: Palliative care patients or their family members were asked to respond to the PDQ. Responses were summarized, read to participants to ensure accuracy, and with permission, placed in their charts. Patient, family, and HCP responses to the PDQ were then elicited. RESULTS: A total of 126 participants (66 patients and 60 family members) responded to the PDQ; 99% indicated that the summaries were accurate, 97% permitted the summary to be placed in the chart, 93% felt that the information was important for HCPs to know, and 99% would recommend the PDQ for others. A total of 137 HCPs completed 293 evaluations of individual PDQs; 90% indicated that they learned something new from it, 64% that they were emotionally affected by it, 59% that it influenced their sense of empathy, and 44% that it influenced their care. HCP empathy, job satisfaction, having a meaningful life, and social support mediated responsiveness to PDQ-elicited information. CONCLUSION: The PDQ offers an effective way of eliciting personhood, enhancing patient, family, and HCP experience alike.

Dignity therapy: a feasibility study of elders in long-term care.

OBJECTIVE: The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly. METHOD: Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs). RESULTS: Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families. SIGNIFICANCE OF RESULTS: This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits--and the effects on healthcare staff--make this area one meriting further study.

Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial.

BACKGROUND: Dignity therapy is a unique, individualised, short-term psychotherapy that was developed for patients (and their families) living with life-threatening or life-limiting illness. We investigated whether dignity therapy could mitigate distress or bolster the experience in patients nearing the end of their lives. METHODS: Patients (aged ≥18 years) with a terminal prognosis (life expectancy ≤6 months) who were receiving palliative care in a hospital or community setting (hospice or home) in Canada, USA, and Australia were randomly assigned to dignity therapy, client-centred care, or standard palliative care in a 1:1:1 ratio. Randomisation was by use of a computer-generated table of random numbers in blocks of 30. Allocation concealment was by use of opaque sealed envelopes. The primary outcomes--reductions in various dimensions of distress before and after completion of the study--were measured with the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale, Patient Dignity Inventory, Hospital Anxiety and Depression Scale, items from the Structured Interview for Symptoms and Concerns, Quality of Life Scale, and modified Edmonton Symptom Assessment Scale. Secondary outcomes of self-reported end-of-life experiences were assessed in a survey that was undertaken after the completion of the study. Outcomes were assessed by research staff with whom the participant had no previous contact to avoid any possible response bias or contamination. Analyses were done on all patients with available data at baseline and at the end of the study intervention. This study is registered with ClinicalTrials.gov, number NCT00133965. FINDINGS: 165 of 441 patients were assigned to dignity therapy, 140 standard palliative care, and 136 client-centred care. 108, 111, and 107 patients, respectively, were analysed. No significant differences were noted in the distress levels before and after completion of the study in the three groups. For the secondary outcomes, patients reported that dignity therapy was significantly more likely than the other two interventions to have been helpful (χ(2)=35·50, df=2; p<0·0001), improve quality of life (χ(2)=14·52; p=0·001), increase sense of dignity (χ(2)=12·66; p=0·002), change how their family saw and appreciated them (χ(2)=33·81; p<0·0001), and be helpful to their family (χ(2)=33·86; p<0·0001). Dignity therapy was significantly better than client-centred care in improving spiritual wellbeing (χ(2)=10·35; p=0·006), and was significantly better than standard palliative care in terms of lessening sadness or depression (χ(2)=9·38; p=0·009); significantly more patients who had received dignity therapy reported that the study group had been satisfactory, compared with those who received standard palliative care (χ(2)=29·58; p<0·0001). INTERPRETATION: Although the ability of dignity therapy to mitigate outright distress, such as depression, desire for death or suicidality, has yet to be proven, its benefits in terms of self-reported end-of-life experiences support its clinical application for patients nearing death. FUNDING: National Cancer Institute, National Institutes of Health.

Palliative care in adolescents and young adults with cancer.

Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a larger workshop on AYA with cancer, was held in Toronto on March 11-13, 2010;117:-. Recommendations were as follows: Develop a specific AYA screening tool designed to detect increased anxiety or new symptoms and to initiate discussion about palliative or symptom care; Set Canadian standards for palliative care in AYA patients. These standards should be included in hospital accreditation; Involve the palliative/symptom care team early in the disease trajectory to help manage clinically important symptoms that may not be associated with imminent death; Establish specific AYA multidisciplinary palliative care teams throughout Canada that are flexible and can work in both pediatric and adult facilities, and are able to work in a "virtual" environment to support patients being cared for at home; Improve physical facilities in hospices and hospitals to meet the distinctive needs of terminally ill AYA patients; Enhance support for palliative care at home by: changing legislation to improve Compassionate Care Benefits and developing "virtual palliative care support teams". Adequate provision of AYA palliative care and symptom management services will likely confer notable benefits to AYA patients and their families, and is likely to be cost saving to the tax payer by avoiding prolonged hospitalization and promoting easier return to work for the families and caregivers.

Learning from dying patients during their final days: life reflections gleaned from dignity therapy.

Dignity therapy is a novel therapeutic approach designed to decrease suffering, enhance quality of life and bolster a sense of dignity for patients approaching death. The benefits of dignity therapy were previously documented in a sample of 100 terminally ill patients. One of the products of dignity therapy is a transcript of the edited therapy session(s). In this qualitative study, 50 of the 100 (17 from Winnipeg, Manitoba, Canada, and 33 from Perth, Australia) dignity therapy transcripts were randomly drawn, and independently coded and analysed by three investigators using a grounded theory approach. The transcripts revealed that dignity therapy serves to provide a safe, therapeutic environment for patients to review the most meaningful aspects of their lives in such a manner that their core values become apparent. The most common values expressed by the patients included 'Family', 'Pleasure', 'Caring', 'A Sense of Accomplishment', 'True Friendship', and 'Rich Experience'. Exemplars of each of these values illustrate the pervasive, defining role of values in our lives. The findings are discussed in terms of values theory, the role of dignity therapy, and consideration of values clarification in clinicians' efforts to enhance the dignity of terminally ill patients.

The landscape of distress in the terminally ill.

Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. Although prior studies have examined the prevalence of symptom distress among patients nearing death, these studies have tended to largely focus on physical and, to a lesser extent, psychological challenges. The aim of this study was to use the Patient Dignity Inventory (PDI), a novel, reliable, and validated measure of end-of-life distress, to describe a broad landscape of distress in patients who are terminally ill. The PDI, a 25-item self-report, was administered to 253 patients receiving palliative care. Each PDI item is rated by patients to indicate the degree to which they experience various kinds of end-of-life distress. Palliative care patients reported an average of 5.74 problems (standard deviation, 5.49; range, 0-24), including physical, psychological, existential, and spiritual challenges. Being an inpatient, being educated, and having a partner were associated with certain kinds of end-of-life problems, particularly existential distress. Spirituality, especially its existential or "sense of meaning and purpose" dimension, was associated with less distress for terminally ill patients. A better appreciation for the nature of distress is a critical step toward a fuller understanding of the challenges facing the terminally ill. A clear articulation of the landscape of distress, including insight regarding those who are most at risk, should pave the way toward more effective, dignity-conserving end-of-life care.

The palliative medication kit: an effective way of extending care in the home for patients nearing death.

OBJECTIVE: Palliative medication kits for home use were developed in order to extend the period of time terminally ill patients might be cared for in their homes. DESIGN: Kits containing medications that could be used when the oral route was lost, targeting common symptoms that result in hospital admissions, were placed in homes of terminally ill patients. SETTING: Regional health authority, urban setting, community-based palliative care. POPULATION: Patients receiving care in the community, anticipated to die within the next 2 weeks and wishing to be cared for at home as long as possible. INTERVENTION: Kits were used when patients were experiencing symptom escalation or crisis, and the drugs to manage these were otherwise not available. Community palliative care nurses recommended when to open the kit and received verbal orders from the supervising palliative care physician for the medications to be administered. MAIN OUTCOME MEASURES: Number of kits placed and opened and the prevalence of home death in those instances; the number of kits placed and not opened and the prevalence of home death in those instances. RESULTS: From 2002-2007, a total of 293 kits were placed in patients' homes and used. Two hundred fifty-eight patients (88%) died at home, compared to 24% who died outside of an acute care setting across the entire program (chi(2) = 579.71; p < 0.0001). In 2006-2007, 73 kits were placed but not used. Forty-four patients (60%) died at home, compared to a program home death rate of 27% (chi(2) = 60.70; p < 0.0001). CONCLUSIONS: Palliative medication kits are a simple and effective way of anticipating and addressing comfort and symptom control for dying patients being cared for in the community. These kits can avert institutional crisis admissions, extend the period of time patients can be cared for in their homes and may increase the likelihood of a home death.

When advanced cancer patients won't eat: family responses.

We conducted a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n = 13), families (n = 23), and health care providers (n = 11) (McClement, 2001). That work generated an inductively derived model that captured important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit, and has been reported elsewhere (McClement et al, 2003). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of 'letting nature take its course: it's best not to eat.' The strategies family members use when letting nature take its course, and the consequences of these strategies for patients, family members and health care providers are reported. Implications for practice and research are provided.

The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care.

Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources of dignity-related distress among patients nearing the end of life. Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the PDI. The 25-items of the PDI derive from a model of dignity in the terminally ill. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the Terminally Ill. Cronbach's coefficient alpha for the PDI was 0.93; the test-retest reliability was r = 0.85. Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress. The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.

Pediatric palliative care online: the views of health care professionals.

The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.

Dignity therapy: family member perspectives.

PURPOSE: Dignity Therapy is a novel therapeutic intervention designed to address psychosocial and existential distress among the terminally ill. This brief, individualized approach to end-of-life care invites patients to discuss issues that are most important to them and to articulate things they would most want remembered as death draws near. These discussions and recollections are recorded, transcribed, and edited into a generativity document, which are usually given to family or loved ones. While the marked benefits of Dignity Therapy on patients' psychosocial and existential distress have been reported elsewhere, this paper presents data on bereft family members' perspectives regarding the impact of dignity therapy on patients and themselves. SUBJECTS AND METHODS: Sixty family members of deceased terminally ill patients who previously took part in Dignity Therapy completed a questionnaire to elicit feedback about the impact of Dignity Therapy on both the dying patient and themselves. RESULTS: Ninety-five percent of participants reported that Dignity Therapy helped the patient; 78% reported that it heightened the patient's sense of dignity; 72% reported that it heightened the patient's sense of purpose; 65% reported that it helped the patient prepare for death; 65% reported that it was as important as any other aspect of the patient's care; and 43% reported that Dignity Therapy reduced the patient's suffering. Regarding family members, 78% reported that the generativity document helped them during their time of grief; 77% reported that the document would continue to be a source of comfort for their families and themselves; and 95% reported they would recommend Dignity Therapy to other patients of family members confronting a terminal illness. CONCLUSION: Family members endorse Dignity Therapy as a therapeutic intervention that moderates their bereavement experiences and lessens suffering and distress in terminally ill relatives.

Burden to others and the terminally ill.

Studies of patients who are terminally ill consistently identify strong associations between "sense of burden to others" and marked end-of-life distress. However, little research has addressed the issue of burden to others among patients nearing death. The aim of this study was to carefully examine "burden to others" and clarify its relationship with various psychosocial, physical, and existential issues arising in patients who are terminally ill. A cohort of 211 patients with end-stage cancer was assessed, using an assortment of validated psychometrics to document psychosocial, physical, and existential aspects of their end-of-life experience. This included an assessment of their sense of "burden to others." Forty percent of participants indicated a negligible sense of burden to others, scoring within the lowest quarter on an ordinal measure of "burden to others;" 25% scored within the second lowest quarter; 12% within the third quarter; and 23% within the highest or most severe range. The most highly correlated variables with "sense of burden to others" included depression (r=0.460; df=201, P<0.0001), hopelessness (r=0.420; df=199, P<0.0001), and outlook (r=0.362; df=200, P<0.0001). Four variables emerged in a multiple regression analysis predicting burden to others, including hopelessness, current quality of life, depression, and level of fatigue [R(2) adj=0.32, F(6,174)=13.76, P<0.0001]. There was no association between sense of burden to others and actual degree of physical dependency. Feeling a sense of burden to others is common among dying patients. Although 40% of the sample reported little in the way of sense of burden to others, the remainder endorsed higher degrees of burden-related distress, with 23% scoring within the most severe range. The lack of association between "sense of burden to others" and the degree of physical dependency suggests this perception is largely mediated through psychological and existential considerations. Strategies that target meaning and purpose, depression, and level of fatigue could lessen this source of distress and enhance quality, dignity-conserving care.

Personality, neuroticism, and coping towards the end of life.

The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.

Dignity in the terminally ill: revisited.

BACKGROUND: Several studies have been conducted examining the notion of dignity and how it is understood and experienced by people as they approach death. OBJECTIVE: The purpose of this study was to use a quantitative approach to validate the Dignity Model, originally based on qualitative data. DESIGN: Themes and subthemes from the Dignity Model were used to devise 22 items; patients were asked the extent to which they believed these specific issues were or could be related to their sense of dignity. RESULTS: Of 211 patients receiving palliative care, "not being treated with respect or understanding" (87.1%) and "feeling a burden to others" (87.1%) were the issues most identified as having an influence on their sense of dignity. All but 1 of the 22 items were endorsed by more that half of the patients; 16 items were endorsed by more than 70% of the patients. Demographic variables such as gender, age, education, and religious affiliation had an influence on what items patients ascribed to their sense of dignity. "Feeling life no longer had meaning or purpose" was the only variable to enter a logistic regression model predicting overall sense of dignity. CONCLUSIONS: This study provides further evidence supporting the validity of the Dignity Model. Items contained within this model provide a broad and inclusive range of issues and concerns that may influence a dying patient's sense of dignity. Sensitivity to these issues will draw care providers closer to being able to provide comprehensive, dignity conserving care.

Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life.

PURPOSE: This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress. PATIENTS AND METHODS: Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a post-intervention satisfaction survey. RESULTS: Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000). CONCLUSION: Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.

Understanding the will to live in patients nearing death.

This study examined concurrent influences on the will to live in 189 patients with end-stage cancer The authors found significant correlations between the will to live and existential, psychological, social, and, to a lesser degree, physical sources of distress. Existential variables proved to have the most influence, with hopelessness, burden to others, and dignity entering into the final model. Health care providers must learn to appreciate the importance of existential issues and their ability to influence the will to live among patients nearing death.