OBJECTIVES: Assessing whether interventions are implemented as intended (fidelity) is critical to establishing efficacy in clinical research yet rarely applied in advance care planning (ACP) interventions. We aimed to develop and implement a fidelity audit tool for an ACP intervention.
METHODS: We developed a fidelity audit tool assessing: (A) content; (B) quality (general communication, eliciting EOL preferences and prognostic communication); and (C) family/caregiver involvement. We audited (double-coded) 55 audio-recordings of ACP discussions delivered to advanced cancer patients and caregivers, within a clinical trial.
RESULTS: Fidelity to content was high: mean=9.38/11 but lower for the quality of general communication (mean=12.47/20), discussion of patient preferences (mean=4.67/7), prognosis (mean=3.9/6) and family/caregiver involvement (mean=2.67/4). Older patient age and caregiver religiosity were associated with higher fidelity. Higher fidelity to content was associated with the trial primary outcome of family caregiver report of patient wishes being discussed and met.
CONCLUSIONS: Fidelity to content, but not quality, of the ACP intervention is strong. Communication skills training is critical for ACP interventionists. Adherence was higher with older patients and religious carers, factors that may influence acceptance of death and readiness to undertake ACP, making the discussion easier.
OBJECTIVES: How advance care planning (ACP) is conceptualised in Australia including when, where and how ACP is best initiated, is unclear. It has been suggested that healthcare delivered in general practice provides an optimal setting for initiation of ACP discussions but uptake remains low. This systematic review and critical interpretive synthesis sought to answer two questions: (1) What are the barriers and enablers to uptake of ACP in general practice? (2) What initiatives have been used to increase uptake of ACP in general practice?
DESIGN: A systematic review and critical interpretive synthesis of the peer-reviewed literature was undertaken. A socioecological framework was used to interpret and map the literature across four contextual levels of influence including individual, interpersonal, provider and system levels within a general practice setting.
SETTING: Primary care general practice settings DATA SOURCES: Searches were undertaken from inception to July 2019 across Ovid Medline, Cumulative Index to Nursing and Allied Health Literature, Scopus, ProQuest and Cochrane Library of systematic reviews.
RESULTS: The search yielded 4883 non-duplicate studies which were reduced to 54 studies for synthesis. Year of publication ranged from 1991 to 2019 and represented research from nine countries. Review findings identified a diverse and disaggregated body of ACP literature describing barriers and enablers to ACP in general practice, and interventions testing single or multiple mechanisms to improve ACP generally without explicit consideration for level of influence. There was a lack of cohesive guidance in shaping effective ACP interventions and some early indications of structured approaches emerging.
CONCLUSION: Findings from this review present an opportunity to strategically apply the ACP research evidence across targeted levels of influence, and with an understanding of mediators and moderators to inform the design of new and enhanced ACP models of care in general practice.
PROSPERO REGISTRATION NUMBER: CRD42018088838.
OBJECTIVE: Implantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.
METHODS: In this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.
RESULTS: Most patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.
CONCLUSIONS: Although patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.
CONTEXT: Although religion and spirituality are important to surrogate decision makers, little is known about the role of religion in decision making regarding life sustaining treatments.
OBJECTIVES: To determine the relationships between dimensions of religion and spirituality and medical treatment decisions made by surrogates.
METHODS: This prospective, observational study enrolled patient/surrogate dyads from three hospitals in one metropolitan area. Eligible patients were 65 years or older and admitted to the medicine or medical intensive care services. Baseline surveys between hospital days 2-10 assessed seven dimensions of religion and spirituality. Chart reviews of the electronic medical record and regional health information exchange 6 months after enrollment identified the use of life sustaining treatments and hospice for patients who died.
RESULTS: There were 291 patient/surrogate dyads. When adjusting for other religious dimensions, demographic, and illness factors, only surrogates' belief in miracles was significantly associated with a lower surrogate preference for DNR status (Adjusted odds Ratio (aOR) 0.39, 95% confidence interval (CI) 0.19, 0.78). Among patients who died, higher surrogate intrinsic religiosity was associated with lower patient receipt of life-sustaining treatments within the last 30 days (aOR 0.66, CI 0.45, 0.97). Belief in miracles (aOR 0.30, CI 0.10, 0.96) and higher intrinsic religiosity (aOR 0.70, CI 0.53, 0.93) were associated with lower hospice utilization.
CONCLUSIONS: Few religious variables are associated with end of life preferences or treatment. Belief in miracles and intrinsic religiosity may affect treatment and should be identified and explored with surrogates by trained chaplains or other clinicians with appropriate training.
PURPOSE: To evaluate demographics of survival in patients with gastroesophageal cancer so that it informs nursing practice.
METHOD: Data on 2215 patients diagnosed with gastroesophageal cancer who presented to a specialist referral centre between the years 2000 and 2011 were extracted from a Public Health repository. Survival time was calculated and analysed against clinical and lifestyle factors to reveal whether they had an impact on survival outcomes.
RESULTS: Over 60% of patients had died within the first year, 39% of these died within the first 6 months. Survival outcomes were reduced in advancing age, and in those patients who present as 'emergency' cases. One quarter of patients were seen by a GP, but were not referred urgently through the two week wait system, to specialist care. Thus, gastroesophageal cancer patients need specific and appropriate treatment options, including earlier referrals to palliative care provision. There is also a need for cancer specific education and information at community and clinical levels.
CONCLUSIONS: The globally applied one and five-year statistics applied to cancer survival studies do not adequately capture rates of early demise with gastroesophageal cancer. This study presents a novel approach to statistical analysis, based on patient derived data. It identifies factors linked to earlier deaths. However, rather than a focus on early presentation and diagnosis (which are essential) - it also reveals a significant need to consider early referrals for palliative care and nursing interventions to alleviate pain and suffering in patients with poor prognosis.
PURPOSE: To analyze the concept of "Death anxiety" (00147) and to propose modifications in the components of this diagnosis in Taxonomy II of NANDA-I.
METHODS: A conceptual analysis was developed based on the eight steps proposed by Walker and Avant.
FINDINGS: Twenty-six articles were included from a search in four databases. Three defining attributes, nine antecedents, and two consequent ones were identified from concept analysis.
CONCLUSIONS: Conceptual analysis made possible the clarification of this diagnosis and the proposition of modifications in its components, which could provide a diagnostic accuracy.
IMPLICATIONS FOR NURSING PRACTICE: Clarification of the diagnosis will allow the accurate identification of this phenomenon in clinical practice and, consequently, more appropriate nursing interventions.
The loss of a loved one is often associated with “death from a broken heart” for the survivor, and there is evidence that shows that widowers and widows are at risk for higher morbidity and mortality than the general population. This systematic review will summarize the physical and physiological health outcomes of spousal bereavement. A systematic database search was conducted, and 38 studies were analyzed. The majority of studies found a statistically significant and positive association between spousal bereavement and adverse physical and physiological health outcomes such as inflammation, cardiovascular risk, chronic pain, and mortality.
Context: Palliative care is underutilized, and research has neglected patient-level factors including attitudes that could contribute to avoidance or acceptance of palliative care referrals. This may be due in part to a lack of existing measures for this purpose.
Objectives: To develop and validate a 9-item scale measuring patient attitudes toward palliative care, comprised of 3 subscales spanning emotional, cognitive, and behavioral factors.
Methods: Data were collected online in three separate waves, targeting individuals with cancer (Sample 1: N=633; Sample 2: N=462) or non-cancer serious illnesses (Sample 3: N=225). Participants were recruited using ResearchMatch.org and postings on the websites, social media pages, and listservs of international health organizations.
Results: Internal consistency was acceptable for the total scale (a=.84) and subscales: emotional (a=.84), cognitive (as=.70), and behavioral (a=.90). The PCAS-9 was significantly associated with a separate measure of palliative care attitudes (ps<.001) and a measure of palliative care knowledge (ps<.004), supporting its construct validity in samples of cancer and non-cancer serious illnesses. The scale’s psychometric properties, including internal consistency and factor structure, generalized across patient subgroups based on diagnosis, other health characteristics, and demographics.
Conclusion: Findings support the overall reliability, validity, and generalizability of the PCAS-9 in serious illness samples and have implications for increasing palliative care utilization via clinical care and future research efforts.
Context: Older and seriously ill Australians are often admitted to hospital in the last year of their life. The extent to which these individuals have considered important aspects of end-of-life (EOL) care, including location in which care is provided, goals of care, and involvement of others in decision making, is unclear.
Objectives: To determine, in a sample of older and seriously ill Australian inpatients, preferences regarding location in which they receive EOL care and reasons for their choice; who is involved in EOL decisions; disclosure of life expectancy; goals of care; and voluntary-assisted dying.
Methods: Cross-sectional face-to-face survey interviews conducted with 186 (80% consent) inpatients in a tertiary referral center aged 80 years and older; or aged 55 years and older with progressive chronic disease(s); or with physician-estimated life expectancy of less than 12 months.
Results: Home care was preferred (69%), given the perceived availability of family/friends, familiarity of environment, and likelihood of having wishes respected. If unable to make decisions themselves, inpatients wanted family to decide care alone (31%) or with a doctor (49%). Of those who had not discussed life expectancy, 23% wished to. Most (76%) preferred care that maintained quality of life and relieved symptoms. There was some agreement for being sedated at the EOL (63%) and able to access medication to end life (43%).
Conclusion: Most inpatients would prefer EOL care that maintains quality and relieves suffering compared with life extension and to receive this care at home. Family involvement in resolution and documentation of EOL decisions should be prioritized.
Background: Single-disease-focused treatment and hospital-centric care are poorly suited to meet complex needs in an era of multimorbidity. Understanding variation in palliative care's association with treatment choices is essential to optimizing interdisciplinary decision making in care of complex patients.
Aim: To estimate the association between palliative care and hospital costs by primary diagnosis and multimorbidity for adults with one of six life-limiting conditions: heart failure, chronic obstructive pulmonary disease (COPD), liver failure, kidney failure, neurodegenerative conditions including dementia, and HIV/AIDS.
Methods: Data from four studies (2002-2015) were pooled to provide an analytic dataset of 73,304 participants with mean costs $10,483, of whom 5,348 (7%) received palliative care. We estimated average effect of palliative care on direct hospital costs among the treated, using propensity scores to control for observed confounding.
Results: Palliative care was associated with a statistically significant reduction in total direct costs for heart failure (estimated treatment effect: -$2666; 95% confidence interval [CI]: -$3440 to -$1892), neurodegenerative conditions (-$3523; -$4394 to -$2651), COPD (-$1613; -$2217 to -$1009), kidney failure (-$3589; -$5132 to -$2045), and liver failure (-$7574; -$9232 to -$5916). The association for liver failure patients was statistically significantly larger than for any other disease group. Cost-saving associations were also statistically larger for patients with multimorbidity than single disease for two of the six groups: neurodegenerative and liver failure.
Conclusions: Heterogeneity in treatment effect estimates was observable in assessing association between palliative care and hospital costs for adults with serious life-limiting illnesses other than cancer. The results illustrate the importance of careful definition of palliative care populations in research and practice, and raise further questions about the role of interdisciplinary decision making in treatment of complex medical illness.
CONTEXT: Studies have shown that palliative care involvement delivers a multitude of benefits to patients and caregivers. The existing palliative care workforce is inadequate to meet growing demand. Innovative strategies to triage inpatient consults are necessary.
OBJECTIVES: To describe the implementation of a new palliative care triage process and to demonstrate its impact on efficiency, teamwork, and patient care.
METHODS: A quasi-experimental study design, comparing clinical consult data from a 6-month period before and a 6-month period after implementation of the novel consult triage model.
RESULTS: Across the 2 study periods, consult demand increased by 44% while the physician staffing (full time equivalent [FTE]) decreased by 38%. Penetration rate per clinical FTE increased (from 1.9%-2.4%; P = .004). Monthly physician work relative value units (RVUs) per FTE increased from 909 to 1678. Physician encounters with hospitalized patients increased from 284 to 353, and total team visits increased from 596 to 891 (P < .001). Average time to consult decreased by 2.4 hours (P = .54).
CONCLUSION: An efficient and streamlined consult triage process had a positive impact on our palliative care team's ability to reach patients. We were able to generate more physician visits and RVUs despite a decrease in physician clinical time, and our penetration rate per physician clinical FTE improved. Our findings highlight the importance of thoughtful and appropriate triage, not to mention teamwork, in helping to augment patient access to palliative care.
Background: The World Health Organization estimates that around 6 million people need palliative care in India but not even 1% of the patients have access to it.
Objective: To find the prevalence of knowledge on palliative care and compare the effectiveness of different methods of health education on attitude regarding palliative care among urban college students in southern India.
Subjects: A pre-post intervention study was conducted in three different arts, science and commerce colleges in urban Pondicherry in August 2017.
Methods: Data regarding attitude change towards palliative care by three different modes of intervention in the three colleges: health talk (Group A), health talk with video (Group B) and health talk and interaction with a patient's caregiver (Group C) - before and after intervention - were collected using a predesigned pretested structured questionnaire.
Results: Among the 65, 75 and 67 participants in Groups A, B and C, respectively - the majority belonged to urban nuclear families; the mean age was 19.5 (0.9) years and Group C had only female students. The prevalence of knowledge about palliative care was found to be 9.2%. There was a difference in attitude scores among the three groups (p = 0.02) with Group C having the highest change of a score with a median of 2 (-1,5). Conclusion: Awareness about palliative care is very low among non-medical undergraduate college students of urban Pondicherry. The best method of health education in changing the attitude towards palliative care was interaction with patient's caregiver.
BACKGROUND: Although palliative care treatment modalities have been shown to improve functional outcomes and provide symptom alleviation in sinonasal cancer, its impact on survival still remains unclear. In this study we aimed to elicit the impact of different palliative therapy options on survival in a nationally representative sample of sinonasal cancer patients.
METHODS: National Cancer Database 2004-2015 data sets were queried for cases of primary sinonasal cancer (N = 380). Kaplan-Meier analysis was utilized to determine median overall survival (M-OS) and overall survival (OS) among the different treatment cohorts (pain management, palliative radiation therapy, palliative chemotherapy, palliative surgery, and combination therapy). Prognostic factors were elicited by comparing OS by log-rank tests and subsequent multivariate Cox regression analysis.
RESULTS: Of the total patients of sinonasal malignancy treated with palliative therapy, most were <70 years old, had stage 4 cancer, and histology indicating squamous cell carcinoma (p < 0.05). On Kaplan-Meier survival analysis, the 1-year OS (1Y-OS) and M-OS were 43.6% and 10.1 months, respectively. The 1Y-OS and M-OS for pain management alone were 35.3% and 4.56 months, respectively. Surgery had the highest 1Y-OS and M-OS, at 74.7% and 22.8 months, respectively (p = 0.002). All treatment modalities had increased 1Y-OS compared with pain management alone. Multivariant analysis demonstrated palliative surgery to be associated with decreased risk of death (hazard ratio, 0.33; 95% confidence interval, 0.17-0.63).
CONCLUSION: In this study we identify the impact of palliative treatment modalities on survival in sinonasal cancer. Palliative surgery was shown to have the highest 1Y-OS and M-OS compared with other palliative treatment modalities.
Purpose: Among individuals with COPD and/or lung cancer, to describe end-of-life health service utilization, costs, and place of death; to identify predictors of home palliative care use, and to assess benefits associated with palliative care use.
Patients and methods: We conducted a retrospective population-based study using provincial linked health administrative data (Ontario, Canada) between 2010 and 2015. We examined health care use in the last 90 days of life in adults 35 years and older with physician-diagnosed COPD and/or lung cancer identified using a validated algorithm and the Ontario Cancer Registry, respectively. Four mutually exclusive groups were considered: (i) COPD only, (ii) lung cancer only, (iii) COPD and lung cancer, and (iv) neither COPD nor lung cancer. Multivariable generalized linear models were employed.
Results: Of 445,488 eligible deaths, 34% had COPD only, 4% had lung cancer only, 5% had both and 57% had neither. Individuals with COPD only received less palliative care (20% vs 57%) than those with lung cancer only. After adjustment, people with lung cancer only were far more likely to receive palliative care (OR=4.22, 4.08-4.37) compared to those with neither diagnosis, while individuals with COPD only were less likely to receive palliative care (OR=0.82, 0.81-0.84). Home palliative care use was associated with reduced death and fewer days in acute care, and less cost, regardless of the diagnosis.
Conclusion: Although individuals with lung cancer were much more likely to receive palliative care than those with COPD, both populations were underserviced. Results suggest greater involvement of palliative care may improve the dying experience of these populations and reduce costs.
Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia-one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers' social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other.
CONTEXT: The validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of ACP behaviors but is long.
OBJECTIVES: Determine whether shorter Survey versions (55-, 34-, 15-, 9-, 4-items) can detect similar change in response to two well-validated ACP interventions and provide practical effect size information.
METHODS: We assessed ACP engagement for 986 English- and Spanish-speaking adults in a randomized trial of PREPARE versus an advance directive (AD-only) study arms. The Survey was administered at baseline, 1 week, and 3, 6, 12 months. We calculated mean change scores from baseline to follow-up time points by study arm, intraclass correlation coefficients of change scores between the 82-item Survey with shorter versions, and within- and between-group effect sizes of the mean change scores.
RESULTS: Shorter Survey versions were able to detect within- and between-group changes at all time points. Within-group intraclass correlations of the 82-item to shorter versions were high (0.78 to 0.97) and the amount of between-group differences were comparable using all Survey versions. Twelve-month within-group effect sizes ranged narrowly from 0.76 to 1.05 for different Survey versions in the PREPARE arm and from 0.44 to 0.64 for the AD-only. Between-group effect sizes ranged narrowly from 0.24 to 0.30 for different Survey versions. Results were similar when stratified by English- and Spanish-speakers.
CONCLUSION: Shorter versions of the ACP Engagement Survey were able to detect within- and between-group changes comparable to the 82-item version and can be useful for efficiently and effectively measuring ACP engagement in research and clinical settings.
OBJECTIVE: The purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the engagement of substitute decision-makers (SDMs) in the patient's advance care planning process (ie, 'ACP engagement'), specifically the SDM's confidence and readiness for the role in the future.
METHODS AND ANALYSIS: This study is a parallel group randomised controlled trial. We aim to enrol 90 participant dyads: patients aged 65 years and older attending outpatient healthcare settings and with indicators they would be at high risk of needing future medical decisions and their SDM. The intervention is the Plan Well Guide decision aid, administered to the patient by a facilitator, with the SDM present. The primary endpoint is change after 3 months in the SDM's ACP engagement using a validated measure of behavioural change (SDM's knowledge, contemplation, self-efficacy and readiness) to enact the role. The secondary endpoints are (1) ACP engagement of the patient measured by a validated survey; (2) change in SDM decisional conflict regarding involvement in future decision-making and (3) postintervention patient decisional conflict regarding preference for life-sustaining treatments. Primary and secondary continuous outcomes will be analysed using the linear regression. The mean difference and 95% CIs will be reported.
ETHICS AND DISSEMINATION: Approval was received August 2017 (2017-3714-GRA) from the Hamilton Integrated Research Ethics Board. We plan to dissesseminate trial results in peer-reviewed journals, at national and international conferences, and via our web-based knowledge translation platforms.
Purpose: Prior latent class analyses (LCA) have focused on people who were bereaved more than 6 months earlier. Research has yet to examine patterns and correlates of emotional responses in the first few months of bereavement. We examined whether subgroups could be identified among very recently (= 6 months) bereaved adults, based on their endorsement of symptoms of prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression. Associations of class membership with overall disturbed grief, PTSD, and depression—assessed concurrently and at 6 months follow-up—were examined. Furthermore, we examined differences between classes regarding socio-demographics, loss-related, and cognitive behavioural variables.
Methods: PGD, PTSD, and depression self-report data from 322 Dutch individuals bereaved = 6 months earlier were subjected to LCA; N = 159 completed the follow-up assessment. Correlates of class membership were examined.
Results: Three classes were identified: a low symptom class (N = 114; 35.4%), a predominantly PGD class (N = 96; 29.8%), and a high symptom class (N = 112; 34.8%). PGD, PTSD, and depression scores (assessed concurrently and at 6 months follow-up) differed significantly between classes, such that low symptom class < predominantly PGD class < high symptom class. Being a woman, younger, more recently bereaved, experiencing deaths of a partner/child and unnatural losses, plus maladaptive cognitions and avoidance behaviours were associated with membership of the pervasive symptom classes.
Conclusion: In the first 6 months of bereavement, meaningful subgroups of bereaved people can be distinguished, which highlights the relevance of early detection of people with elevated bereavement-related distress and offering them preventive interventions that foster adaptation to loss.
I could hear her screaming even before I turned the corner toward her room.
I hurried down the hallway. The patient, Lu, was shouting in Chinese, a language I knew but that the nurse with her now, Deborah, did not. I stopped right outside the door as Lu unleashed a verbal assault on her, criticizing her for her apparent lack of ability in caring for a patient.
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When should doctors seek protective custody to override a parent's refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25-50%. This is not the case when the treatment in question is open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40-50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations.