Near End Of Life Research Articles

Dignity Therapy and Life Review for Palliative Care Patients: A Qualitative Study

ContextDignity therapy (DT) is a psychotherapeutic intervention whose aim was to bolster the sense of purpose, meaning, and sense of dignity in patients with terminal disease. ObjectivesThe aim of this study was to explore, compare, and better understand the content of standard DT, waitlist DT (WDT), and Life Review (LR) that used the DT interview protocol but omitted the creation of legacy documents. MethodsEfficacy of these interventions was previously documented in a sample of 56 participants. In this study, DT and WDT legacy documents and LR session transcripts were qualitatively analyzed using the Framework approach, both deductively and inductively. ResultsAll participants expressed a diverse set of beliefs, values, memories, and important relationships with the majority also indicating at least some sense of meaning and acceptance despite disappointments, regrets, and the impacts of illness. Sense of legacy, fighting spirit, and hope were particularly prevalent in legacy documents (DT and WDT groups), whereas relationship regrets, self-blame, unfinished business, and aftermath concerns were more likely to be expressed during the LR process. Themes of spirituality, illness impacts, and unfinished business were relatively less common in WDT participants. ConclusionThis study provides further insight into what palliative care patients consider to be most important and meaningful to them when taking part in DT and LR. Creating legacy documents is likely to result in session content that is different in several key areas compared with LR, even when controlling for interview questions, therapist influences, and session length. Consideration of the above is essential in optimizing psychotherapeutic outcomes near end of life.

Assessing the utilization of radiotherapy near end of life at a Finnish University Hospital: a retrospective cohort study

Background: Palliative radiotherapy can improve quality of life for cancer patients during the last months of life. However, very short life expectancy may devastate the benefit of the treatment. This single center study assesses the utilization of radiotherapy during the last weeks of life.Material and methods: All cancer patients (N = 38,982) treated with radiotherapy (N = 11,395) in Turku University Central Hospital during 2005–2013 were identified in the database consisting of electronic patient records. One fourth (N = 2904, 25.5%) of the radiotherapy treatments were given during the last year of life. The last radiotherapy treatments and the time from the last radiotherapy treatment to death were assessed in regards to patients’ age, cancer diagnosis, domicile, place of death and the treatment year. Treatments given during the last two weeks of life were also assessed regarding the goal of treatment and the reason for possible discontinuation.Results: The median time from the last fraction of radiotherapy to death was 84 d. During the last two weeks before death (N = 340), pain (29.4%) was the most common indication for radiotherapy. Treatment was discontinued in 40.6% of the patients during the last two weeks of life, and worsening of general condition was the most common reason for discontinuity (70.3%). The patients receiving radiotherapy during the last weeks of life were more likely to die in tertiary care unit. During the last year of life single-fraction treatment was used only in 7% of all therapy courses. There was a statistically significant (p < .05) decrease in the median number of fractions in the last radiotherapy treatment between 2005–2007 (8 fractions) and 2011–2013 (6 fractions).Conclusions: Up to 70% of the treatments during the last two weeks of life were not delivered to alleviate pain and utilization of single fraction radiotherapy during the last year of life was infrequent. These observations suggest that practice of radiotherapy during the last weeks of life should be revisited.

Chemotherapy use near end of life (EOL): Measuring real world benchmarks.

228 Background: Use of anti-cancer therapies in the last 14-30 days of life may worsen patient outcomes and increase cost; accordingly, rate of chemotherapy use near EOL is an important quality measure. Contemporary benchmarks are needed, with transparent methods describing the cohort in which the measure is assessed, and criteria for calculation. Methods: Data on chemotherapy use, mortality, and cancer diagnosis was sourced from electronic health records (EHRs) of &gt;8,000 patients seen between 2014-2016 at two large US academic centers, for whom dates of death were available. Death dates were sourced from the EHR and public records (e.g., obituaries). Patients were grouped by diagnosis using ICD-10 codes. Rates of infusional chemotherapy receipt within 14 or 30 days of death were calculated. Results: Across 10 tumor types, 3-7% of patients received chemotherapy within 14d of death, and 6-16% received it within 30d. Rates were stable from 2014-2016 and did not differ by cancer center. Rates were highest in diseases where patients may experience rapid clinical decline near EOL: in pancreatic and rectal cancer, 30d rates were 16% and 13%. The 30d rate was lowest (6%) in kidney cancer. When the cohort was restricted to only treated patients (who received &gt;=5 chemotherapy administrations at the center), rates of chemotherapy use at EOL increased to 6-12% (14d) and 17-28% (30d). Conclusions: This study provides baseline estimates of current rates of EOL chemotherapy use at academic centers. Transparency in methodology is critical; for example, when the whole population of cancer patients seen at a center is considered, rates are low, but when the analysis is limited to patients who received chemotherapy there, rates nearly double. Further studies should focus on whether this quality measure is a meaningful driver of patient and health system outcomes. This work also demonstrates that it is possible to assess this metric across multiple centers; this approach could be easily scaled to all oncology practices integrated in a data sharing network. [Table: see text]

Catheter ablation of ventricular extrasystoles and ventricular tachycardia in the elderly

The prevalence of structural heart disease increases with higher age, and thereby the basis for ventricular arrhythmias is created. Catheter ablation has been shown to be an effective therapy option that is very safe and achieves good long-term results in patients with recurrent ventricular tachycardia (VT). Data regarding ablation in patients older than 75 years is sparse, although this patient group was included as a minority in most published VT ablation studies. Data from younger patient collectives may not be transferable to older patient cohorts due to differences in patient comorbidities and baseline characteristics. Studies with patient collectives ≥75 years or even ≥80 years show comparable efficacy of catheter ablation for VT; however, the complication rate is higher, mainly due to groin complications, increases. Catheter ablation of ischemic VT appears effective and safe even in ≥75 year olds; however, extensive data for other structural heart diseases are lacking. Epicardial procedures are also possible and safe in older patients (≥80years). Due to the significant challenges of VT ablation in older patients, including the consideration of complex comorbidities, these should be performed in specialized centers with high expertise. The aim of catheter ablation in older patients is, above all, to improve quality of life and morbidity. Long-term survival is significantly lower due to the "near end of life" situation than in younger patients. Careful consideration of alternative therapy options, chances for success of the catheter ablation, and their risks, taking into account specific patient conditions and symptoms, is crucial in these patients.

Bringing Home to the Hospital: Development of the Reflection Room and Provider Perspectives.

Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this care in our hospital. We hypothesized staff would report a positive experience in providing EOL and/or postmortem (PM) care here and would recommend this to peers. This explorative study summarized room use data and evaluated staff experiences using a voluntary qualitative and quantitative survey. The survey was administered to the inpatient interdisciplinary team. From 2011 to 2014, 116 children used the RR, 64% for PM care, and 34% for EOL care. A total of 201 staff responded to the survey. Of them, 90% described the space as a valuable resource to families, 90% reported a preference for using this location versus a hospital unit, and 93% stated they would encourage their peers to do the same. Advantages listed were increased privacy, allowance for more visitors, and a quieter, calmer environment. Challenges included distance from the unit of transfer, managing assignments in two hospital locations, and medication transportation. Overall, there was a measureable decrease in the number of deaths pronounced in the ICU as the number pronounced in the RR increased, illustrating a significant change in practice. This study demonstrated an overwhelmingly positive experience in providing EOL and/or PM care to children in the RR and staff would recommend this to peers. This model of care should be a serious consideration for hospitals in the United States.

Dignity Therapy and Life Review for Palliative Care Patients: A Randomized Controlled Trial

ContextDignity therapy (DT) is a psychotherapeutic intervention with increasing evidence of acceptability and utility in palliative care settings. ObjectivesThe aim of this study was to evaluate the legacy creation component of DT by comparing this intervention with life review (LR) and waitlist control (WC) groups. MethodsSeventy adults with advanced terminal disease were randomly allocated to DT, LR, or WC followed by DT, of which 56 completed the study protocol. LR followed an identical protocol to DT except that no legacy document was created in LR. Primary outcome measures were the Brief Generativity and Ego-Integrity Questionnaire, Patient Dignity Inventory, Functional Assessment of Cancer Therapy-General, version 4, and treatment evaluation questionnaires. ResultsUnlike LR and WC groups, DT recipients demonstrated significantly increased generativity and ego-integrity scores at study completion. There were no significant changes for dignity-related distress or physical, social, emotional, and functional well-being among the three groups. There were also no significant changes in primary outcomes after the provision of DT after the waiting period in the WC group. High acceptability and satisfaction with interventions were noted for recipients of both DT and LR and family/carers of DT participants. ConclusionThis study provides initial evidence that the specific process of legacy creation is able to positively affect sense of generativity, meaning, and acceptance near end of life. High acceptability and satisfaction rates for both DT and LR and positive impacts on families/carers of DT participants provide additional support for clinical utility of these interventions. Further evaluation of specific mechanisms of change post-intervention is required given DT's uncertain efficacy on other primary outcomes.

The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries

ContextCalifornia implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. ObjectivesThe aim of this study was to examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. MethodsUsing 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i.e., hospice enrollment, hospice length of stay) changes for children who resided in pediatric policy counties relative to those who did not. The sample of children in California who died with a life-threatening serious illness in 2007 and 2010 equaled 979 children. ResultsMore than 10% of children enrolled in hospice care with an average of less than 3 days of hospice care. The palliative care policy did not have any effect on hospice enrollment. However, the policy was positively associated with increasing days in hospice care (incidence rate ratio = 5.61, P < 0.05). The rate of hospice length of stay increased by a factor of 5.61 for children in palliative care counties compared with children unaffected by the policy. ConclusionThe pediatric palliative care policy was associated with longer lengths of stay in hospice once the children were enrolled. Policies promoting palliative care are critical to ensuring access to hospice care for children.

Clinical Ethics and Nutrition Support Practice: Implications for Practice Change and Curriculum Development

Clinical ethics awareness involving nutrition support has increased during the past 4 decades because of media attention and public discussion of several landmark cases, including Karen Ann Quinlan, Nancy Beth Cruzan, and Theresa Marie Schiavo, and the results of subsequent court decisions. 1 Schwartz D.B. Ethical considerations in the critically ill patient. in: Cresci G. Nutritional Therapy for the Critically Ill Patient: A Guide to Practice. 2nd ed. Taylor & Francis, Boca Raton, FL2015: 635-652 Crossref Google Scholar Yet decisions to start or stop nutrition support for specific individuals remain challenging. Withholding or withdrawing nutrition support is appropriate if the risks and burdens outweigh the potential benefits as perceived by the informed individual, family, or surrogate decision maker. Despite advancements in the field of nutrition support practice, a practice gap remains between appropriate use of nutrition support and other advanced life-sustaining treatments, such as mechanical ventilation and cardiopulmonary resuscitation, based on the individual’s wishes. 2 Geppert C.M.A. Barrocas A. Schwartz D.B. Ethics and law. in: Mueller C. McClave S.A. Schwartz D.B. Kovacevich D. Miller S.J. The A.S.P.E.N. Adult Nutrition Support Core Curriculum. 2nd ed. American Society for Parenteral and Enteral Nutrition, Springfield, MD2012: 656-676 Google Scholar , 3 Raijmakers N.J.H. van Zuylen L. Costantini M. et al. on behalf of OPCARE9Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects. Ann Oncol. 2011; 22: 1478-1486 Abstract Full Text Full Text PDF PubMed Scopus (102) Google Scholar , 4 Teno J.M. Gozalo P.L. Bynum J.P.W. et al. Change in end-of-life care for beneficiaries. JAMA. 2013; 309: 470-477 Crossref PubMed Scopus (753) Google Scholar , 5 Schwartz D.B. Barrocas A. Wesley J.R. et al. A.S.P.E.N. Special report: Gastrostomy tube placement in patients with advanced dementia or near end of life. Nutr Clinc Pract. 2014; 29: 829-840 Crossref PubMed Scopus (35) Google Scholar , 6 Institute of Medicine. Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life, Key Findings and Recommendations. https://iom.nationalacademies.org/∼/media/Files/Report%20Files/2014/EOL/Key%20Findings%20and%20Recommendations.pdf. Published 2014. Accessed October 26, 2015. Google Scholar

Sexuality and aging: a focus on lesbian, gay, bisexual, and transgender (LGBT) needs in palliative and end of life care.

Sex and sexuality are core components of the human experience. Many older adults and people with terminal illness still consider sexuality important in their lives. The palliative care experiences of lesbian, gay, bisexual, and transgender (LGBT) persons are unique in a number of important ways with regard to sexuality and sexual expression. To date, there has been relatively limited scholarly research on sexual health needs of people in palliative care and near end of life, and an even greater paucity of data specifically about sexual minorities. Forms of sexual expression may change with advancing age and illness. Physical intimacy and emotional connection may take on greater roles compared with more traditional concepts of sexual activity. Several recent studies have examined sexual health in palliative care and a few have examined LGBT cohorts. Advances in public policy, including the recent US Supreme Court decision regarding marriage equality, have continued to shape the cultural landscape for LGBT people. This article reviews recent literature with considerations for future research. Sexuality and intimacy remain important for many people facing terminal illness. LGBT people face unique challenges with regard to sexuality during palliative care. Clinicians should work to avoid heteronormative stereotypes and focus on goals of care to enhance quality of life for all patients.

Improving care for people nearing end of life.

Dion Smyth, Lecturer-Practitioner in Cancer and Palliative Care at Birmingham City University, discusses how important it is for health professionals working across all settings to be aware of the new guidance.

Utilization of palliative radiotherapy for bone metastases near end of life in a population-based cohort.

BackgroundPalliative radiotherapy (PRT) can significantly improve quality of life for patients dying of cancer with bone metastases. However, an aggressive cancer treatment near end of life is an indicator of poor-quality care. But the optimal rate of overall palliative RT use near the end of life is still unknown. We sought to determine the patterns of palliative radiation therapy (RT) utilization in patients with bone metastases towards their end of life in a population-based, publicly funded health care system.MethodsAll consecutive patients with bone metastases treated with RT between 2007 and 2011 were identified in a provincial Canadian cancer registry database. Patients were categorized as receiving RT in the last 2 weeks, 2–4 weeks, or >4 weeks before their death. Associations between RT fractionation utilization by these categories, and patient and provider characteristics were assessed through logistic regression.ResultsOf the 16,898 courses 1734 (10.3) and 709 (4.2 %) were prescribed to patients in the last 2–4 weeks and <2 weeks of their life, respectively. Primary lung (8 %) and gastrointestinal (6.9 %) cancers received palliative RT more commonly in the last 2 weeks of life (OR 3.72 [2.86–4.84] & 3.33 [2.42–4.58] respectively, p <0.001). Among the 709 patients who received RT in the last 2 weeks of life, 350 (49), 167 (24), and 127 (18 %) were for spine, pelvis, and extremity metastases, respectively. RT was prescribed most frequently to spine (5 %) and extremity (4 %) metastases p <0.001 in the last two weeks of life, though only varied between 1 % (sternum) and 5 % (spine) by site of metastases. Single fraction RT was prescribed more commonly in the last 2 weeks of life (64.2 %), compared to individuals who received RT 2–4 weeks (54.5), and >4 weeks (47.9 %) before death (p <0.001).ConclusionsThis population-based analysis found that only 4 % of patients with bone metastases received radiation therapy during the last 2 weeks of their life in our population-based, publicly funded program, though it was significantly higher in patients with lung cancer and those with metastases to the spine or extremity. Appropriately, use of multiple fractions palliative RT was less common in patients closer to death.

Abstract 19525: Heart Failure Readmission Rates: Clinical Experience With the C-Pulse® Extra-Aortic Counterpulsation System

Introduction: Heart failure-related readmission rates remain high. In the EFFECT phase I study, 61.3% of patients had repeat hospitalization within one year of initial discharge, with the majority occurring shortly postdischarge or near end of life. Analysis of Medicare beneficiaries from 2007-2009 of 1,330,157 heart failure (HF) hospitalizations found 35% of patients readmitted for the same condition within 30 days. Readmission (RA) reflects increased morbidity, impaired quality of life, and a growing economic burden on health care resources. Hypothesis: The US feasibility investigational study gathered data to evaluate readmission in class III/ambulatory IV HF patients receiving an extra-aortic counterpulsation system (C-Pulse®, Sunshine Heart, Inc.) designed to increase coronary blood flow, reduce the workload of the left ventricle, and improve cardiac function. Methods: Between April 2009 and June 2011, twenty HF patients were enrolled in a prospective US feasibility study undergoing C-Pulse device implantation procedures at 7 centers. RA data was collected at 30 days, 6 and 12 months post implant. Results: The study included 12 males, 18 NYHA class III and 2 ambulatory NYHA class IV patients, 7 ischemic and 13 non-ischemic. Mean age was 56±7 years. Baseline ejection fraction (EF) was 28% ± 6.1. Over 12 months, 3 of the 20 implanted C-Pulse feasibility study patients (15%) had 5 HF hospitalizations after device implantation (Clinical Events Committee adjudicated, occurring at 208 days, 205 and 245 days, 33 and 52 days). Two of the three patients had low device usage compliance prior to HF events (&lt;30% use). Conclusion: Recently published data has demonstrated preliminary indications of safety and efficacy of counterpulsation therapy with the C-pulse system for the management of chronic HF. Lifetime analysis work from the EFFECT study has shown an overall RA rate of 61.3% at 12 months in patients suffering from HF. In comparison, RA rates for patients undergoing C-pulse implantation appear to be greatly reduced at 30 days and at one year. In addition, RA rates for patients undergoing C-pulse implantation are lower than RA rates reported for other forms of durable mechanical circulatory support at 30 days and 1 year.

Radiotherapy (RT) for brain metastases (BM) near end of life (EOL): Does referral setting matter?

e17723 Background: Incidence of BM in non-small cell lung cancer (NSCLC), treatment referral patterns, and receipt of brain RT are not well-described. We assessed frequency of BM development, brain...

Making sense of a changed physical body: Why gender matters at end of life

The bodily experience of patients near end of life has been presented within sociological literature as largely undifferentiated. The attempt of this paper is to overcome this gap by exploring how gender intersects with the loss of bodily autonomy experienced by hospice patients. The study was conducted in two in-patient hospice units located near Lisbon, the capital of Portugal. A total of ten terminally ill patients were interviewed, along with twenty family members and twenty members of hospice staff. For the men in this study loss of bodily autonomy was a very dramatic experience as it contravened masculine norms. The women's reactions towards their loss of autonomy were less negative compared to those of men and they made a considerable effort to integrate the best as they could their physical condition. This reflected feminine traits. Findings suggested that the loss of bodily autonomy is gendered in the sense that men and women experience it in dissimilar ways.

Black patients at higher risk of intensive medical procedures near end of life

Black patients at higher risk of intensive medical procedures near end of life

Patient evaluation of a physician conveying a more optimistic versus a less optimistic message: A randomized controlled trial.

88 Background: Information regarding treatment options and prognosis is essential for patient decision making near end of life. However, physicians are frequently reluctant to deliver bad news due to multiple factors, including fear of being perceived as less compassionate. This randomized controlled double blind trial aimed to examine the patient’s perception of physician compassion after being exposed to a more optimistic vs. a less optimistic message. Methods: 100 patients were randomized to observe 2 standardized videos, depicting a physician discussing treatment and prognostic information (more optimistic message and less optimistic message) with a patient with advanced cancer. Both physicians displayed identical number of empathetic statements (5) and posture. Three sets of surveys were completed including the Physician Compassion Questionnaire (0=best, 50=worst). Actors and patients were blinded to the purpose of the study. Investigators were blinded to the video observed by the patient. Results: Patients reported significantly better compassion scores after watching the more optimistic video as compared to the less optimistic video [median (Q1-Q3): 15 (5-23) vs. 23 (10-31), p=0.0002]. Results were equally significant after parallel analysis of first video only and after cross-over analysis. There was also an order effect with compassion scores (p=0.0002) favoring the second video. Univariate analysis showed that degree of trust in the medical profession, ESAS fatigue, ESAS anxiety and ESAS depression had significant association with compassion perception independent of message observed. After applying Bonferonni correction, only degree of trust in the medical profession reached the corrected p value of p=0.0014 (p=0.0002). Conclusions: A more optimistic message resulted in a physician being perceived as more compassionate by the patient. The physician seen in second order is also perceived to be more compassionate. More research is needed to better understand patient perception of compassion in communication with physicians.

Assessing Quality of Care (QC) Near End of Life (EOL): Use of Natural Language Processing (NLP) to Identify Brain Metastasis (BM) Cases for Evaluation of Radiation Therapy (RT) Receipt: Outcomes/Health Services Research

Assessing Quality of Care (QC) Near End of Life (EOL): Use of Natural Language Processing (NLP) to Identify Brain Metastasis (BM) Cases for Evaluation of Radiation Therapy (RT) Receipt: Outcomes/Health Services Research

Identifying Patients in the Acute Psychiatric Hospital Who May Benefit From a Palliative Care Approach.

Identifying patients who will benefit from a palliative care approach is the first critical step in integrating palliative with curative therapy. Criteria are established that identify hospitalized medical patients who are near end of life, yet there are no criteria with respect to hospitalized patients with psychiatric disorders. The records of 276 consecutive patients admitted to a dedicated inpatient psychiatric unit were reviewed to identify prognostic criteria predictive of mortality. Mortality predictors were 2 or more admissions in the past year (P = .0114) and older age (P = .0006). Twenty-two percent of patients met National Hospice and Palliative Care Organization noncancer criteria for dementia. Palliative care intervention should be considered when treating inpatients with psychiatric disorders, especially older patients who have a previous hospitalization or history of dementia.

Assessing Quality of Care (QC) Near End of Life (EOL): Use of Natural Language Processing (NLP) to Identify Brain Metastasis (BM) Cases for Evaluation of Radiation Therapy (RT) Receipt

BM incidence on and following initial diagnosis of non-small cell lung cancer (NSCLC) is not well- described. We developed a NLP algorithm to identify BM cases with the ultimate aim of assessing RT receipt near EOL as a QC indicator.

News Analysis

In an overhaul of end-of-life care, the Priorities for Care will replace the Liverpool Care Pathway. This will highlight and respect the requests of the person nearing end of life