Questions related to end-of-life decision making are common in clinical ethics and may be exceedingly difficult. Chief among these are the provision of cardiopulmonary resuscitation (CPR) and do-not-resuscitate orders (DNRs). To better address such questions, clarity is needed on the values of medical ethics that underlie CPR and the relevant moral framework for making treatment decisions. An informed consent model is insufficient to provide justification for CPR. Instead, ethical justification for CPR rests on the rule of rescue and on substituted interest judgments. Patients' known wishes and values are relevant, particularly in protecting them from unwanted CPR. Clinicians should rescue patients with the means at their disposal, as a prima facie moral imperative, unless there are compelling reasons to refrain. We present a moral framework for making decisions regarding CPR and DNR.
CONTEXT: Cancer-related pain is associated with significant suffering and is one of the most challenging symptoms to manage. Studies indicate that front-line clinicians often lack the knowledge on best practices in cancer pain management.
OBJECTIVES: The current project, a quality improvement (QI) initiative, evaluated the outcome of an online educational intervention for nurses on complex cancer pain management.
METHODS: An online 7-module educational intervention, Advanced Pain Assessment and Management, was offered from 2012 to 2017. Pre-post course evaluations included self-reported knowledge and confidence across cancer pain management domains. In-course competency assessments included knowledge examination, online discussion forum participation, opioid dosage calculation assignment, and small-group-based case study. A mixed-model statistical analysis was used to assess pre-post course change in pain management confidence level.
RESULTS: In all, 306 nurses from 89 hospitals in Ontario, Canada, were enrolled in the course; 81.4% returned the precourse survey and 71.9% successfully completed the course. The average confidence level on pain management was low at baseline (57.5%) but improved significantly post-course. In-course competency assessments ranged from 81% to 89%. Mixed-model results showed post-course improvements in confidence levels, independent of sociodemographic background, clinical role, and professional educational level. Nurses with longer years of practice and more cancer cases reported greater confidence.
CONCLUSION: A facilitator-led online educational intervention focusing on complex cancer pain management can significantly improve nurses' knowledge, confidence, and skills. Low baseline knowledge among nurses highlights the pressing need for health-care organizations to implement cancer pain management training as an integral part of health-care QI initiative.
BACKGROUND: Research demonstrates that the attitudes of religious physicians toward end-of-life care treatment can differ substantially from their nonreligious colleagues. While there are various religious perspectives regarding treatment near the end of life, the attitudes of Muslim physicians in this area are largely unknown.
OBJECTIVE: This article attempts to fill in this gap by presenting American Muslim physician attitudes toward end-of-life care decision-making and by examining associations between physician religiosity and these attitudes.
METHODS: A randomized national sample of 626 Muslim physicians completed a mailed questionnaire assessing religiosity and end-of-life care attitudes. Religiosity, religious practice, and bioethics resource utilization were analyzed as predictors of quality-of-life considerations, attitudes regarding withholding and withdrawing life-sustaining treatment, and end-of-life treatment recommendations at the bivariate and multivariable level.
RESULTS: Two-hundred fifty-five (41% response rate) respondents completed surveys. Most physicians reported that religion was either very or the most important part of their life (89%). Physicians who reported consulting Islamic bioethics literature more often had higher odds of recommending active treatment over hospice care in an end-of-life case vignette. Physicians who were more religious had higher odds of viewing withdrawal of life-sustaining treatment more ethically and psychologically challenging than withholding it and had lower odds of agreeing that one should always comply with a competent patient's request to withdraw life-sustaining treatment.
DISCUSSION: Religiosity appears to impact Muslim physician attitudes toward various aspects of end-of-life health-care decision-making. Greater research is needed to evaluate how this relationship manifests itself in patient care conversations and shared clinical decision-making in the hospital.
RESEARCH QUESTION: How does the process of engagement and integration of sources of information outside patient-physician interaction affect how individuals with cancer interpret their treatment experience and prognosis?
BACKGROUND: Studies of patient-physician communication of prognosis in oncology highlight areas where misunderstanding occurs: understanding consequences of treatment, likelihood of treatment success, probability of cure, status/progression of illness, and prognosis. Theories proposing mechanisms that underlie this discrepancy cannot account for all instances of misunderstanding, including when complete and direct physician disclosure occurs. Prior research focused on patient-physician communication event(s) and immediate antecedents and consequences. However, less is known about what happens to information once it has been communicated and how a patient's process to interpret the meaning of their experience affects their understanding of it. Our study explores this question by examining patient communication with sources of information other than treating physicians.
METHODOLOGY: We conducted 10 semi-structured qualitative interviews with individuals diagnosed with 4 types of cancer at different stages. The interviews were analyzed using inductive qualitative analysis.
RESULTS: Participants in our sample consulted a variety of additional sources to give context and understanding to their communicated prognosis. These were important contributors to how they understood their prognosis and incorporated that understanding. They included family, friends/acquaintances, cancer survivors, support/survivor groups, secondary health-care staff, and relevant informational materials. Different motivations for seeking out these sources were also expressed. Participants expressed a link between their understanding of their prognosis and the variety of outside sources they enlisted for input and support.
BACKGROUND: Despite the increasing use of erythropoiesis-stimulating agent (ESA) in patients receiving dialysis, few studies have examined the benefits of ESA for patients with chronic kidney disease receiving palliative care.
OBJECTIVE: We designed a retrospective observational study to evaluate the effect of ESA in treating anemia of renal disease among adult patients receiving palliative care instead of dialysis. The primary objective was to assess whether ESA can reduce the transfusion burden and hospitalization.
RESULTS: Thirty-nine patients receiving ESA were matched with a control group of 39 patients without ESA. Their mean age and glomerular filtration rates were 76.7 (10.2) years and 11.6 (5.7) mL/min/1.73 m2, respectively. Baseline hemoglobin levels were comparable in the ESA and control groups; their corresponding values were 10.2 (1.5) and 10.1 (1.4) g/dL. During 1-year observation period, 34 units of red cell transfusion occurred in patients receiving ESA, whereas 128 units of red cell were transfused to patients in control group. Patients in the control group had higher transfusion rate (incidence rate ratio [IRR]: 3.63; 95% confidence interval [CI]: 2.49-5.31; P < .00001) and higher admission rates (IRR: 2.34; 95% CI: 1.80-3.03; P < .000001) than the ESA group even after adjustment for comorbidities.
CONCLUSIONS: High disease burden of palliative care among patients with stage 4 to 5 chronic kidney disease was reflected by transfusion requirement and hospitalization rates, both of which were shown to be significantly ameliorated by ESA treatment.
Interest and appreciation for palliative care (PC) has resulted in increased demand for both PC services and education. The PC rotation has been shown to improve PC knowledge in medical students (MS) and internal medicine (IM) residents, and PC specialists stand poised to direct the primary PC education of learners at different levels of training. To concurrently teach learners of different levels of training on a busy PC service, we created an educational system that emphasizes management of learner schedules, organization of teaching activities, faculty development to improve teaching skills, and learner self-evaluation. Both MS and IM residents showed an improvement in self-assessed competence as well as increased comfort level with seriously ill patients after PC rotation. Careful adjustment of learner schedules has accommodated an increasing number of learners, while maintaining a low learner to faculty ratio. The PC educators face an exciting and daunting challenge as the number of patients with PC needs and the number of learners requesting PC experience grow. We continue to improve milestone-based PC assessment tools, to invest in faculty development, and to explore innovative ways to support PC educators as they strive to provide consistent PC education that is both useful for learners and can be incorporated into busy PC clinical practice.
BACKGROUND: Little is known about the patterns of end-of-life (EOL) health care for older Mexican-Americans with or without a diagnosis of Alzheimer's disease and related dementias (ADRD). Our objective was to investigate the frequency of acute hospital admissions, intensive care unit (ICU) use, and ventilator use during the last 30-days of life for deceased older Mexican-American Medicare Beneficiaries with and without an ADRD diagnosis.
METHODS: We used Medicare claims data linked with survey information from 1,090 participants (mean age of death 85.1 years) of the Hispanic EPESE. Multivariable logistic regression models were used to estimate the odds for hospitalization, ICU use, and ventilator use in the last 30-days of life for decedents with ADRD compared to those without ADRD. Generalized linear models were used to estimate risk ratio for length of hospital stay (LOS).
RESULTS: Within the last 30-days of life, 64.5% of decedents had an acute hospitalization (59.1% ADRD, 68.3% no ADRD), 33.9% had an ICU stay (31.3% ADRD, 35.8% no ADRD), and 17.2% used a ventilator (14.9% ADRD, 18.8% no ADRD). ADRD was associated with significantly lower hospitalizations (OR=0.67, 95% CI=0.50-0.89) and shorter LOS (RR=0.77, 95% CI=0.65-0.90).
CONCLUSION: Hospitalization, ICU stay, and ventilator use are common at the end of life for older Mexican-Americans. The lower hospitalization and shorter LOS of decedents with ADRD indicate a modest reduction in acute care use. Future research should investigate the impact of EOL planning on acute-care use and quality of life in terminally ill Mexican-American older adults.
OBJECTIVE: This article sought to explore ethical issues associated with prioritization decisions in palliative care.
METHODS: As part of a broader series of studies of triage in palliative care, this qualitative substudy was conducted via semi-structured focus groups and individual interviews. Transcripts were subjected to thematic analysis.
SETTING/PARTICIPANTS:: Twenty health professionals working across disciplines (primary, specialist; medicine, nursing, and allied health), service types (inpatient, hospital liaison, and community), and locations (metropolitan and rural) in Victoria, Australia.
RESULTS:: Four themes emerged from the data: (1) Clinicians understood the tension between maintaining service quality with the delivery of a compromised service that sought to respond to demand. (2) They were aware of the influences of relationships and responsibilities upon patient waiting list prioritization, and (3) reported a hierarchy of suffering with certain types of clinical problems viewed as more urgent than others, for example, pain being more urgent than existential distress. (4) Clinicians noted a lack of transparency around waiting lists as they currently exist.
CONCLUSIONS: This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. Making explicit the processes and influences upon decision-making provides greater transparency of health-care utilization at the end of life.
To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.
BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
OBJECTIVE: Terminally ill patients at their end-of-life (EOL) phase attending the emergency department (ED) may have complex and specialized care needs frequently overlooked by ED physicians. To tailor to the needs of this unique group, the ED in a tertiary hospital implemented an EOL pathway since 2014. The objective of our study is to describe the epidemiological characteristics, symptom burden and management of patients using a protocolized management care bundle.
METHODS: We conducted an observational study on the database of EOL patients over a 28-month period. Patients aged 21 years and above, who attended the ED and were managed according to these guidelines, were included. Clinical data were extracted from the hospital's electronic medical records system.
RESULTS: Two hundred five patients were managed under the EOL pathway, with a slight male predominance (106/205, 51.7%) and a median age of 78 (interquartile range 69-87) years. The majority were chronically frail (42.0%) or diagnosed with cancer or other terminal illnesses (32.7%). The 3 most commonly experienced symptoms were drowsiness (66.3%), dyspnea (61.5%), and fever (29.7%). Through the protocolized management care bundle, 74.1% of patients with dyspnea and/or pain received opiates while 59.5% with copious secretions received hyoscine butylbromide for symptomatic relief.
CONCLUSION: The institution of a protocolized care bundle is feasible and provides ED physicians with a guide in managing EOL patients. Though still suboptimal, considerable advances in EOL care at the ED have been achieved and may be further improved through continual education and enhancements in the care bundle.
As the Medicare program struggles to control expenditures, there is increased focus on opportunities to manage patient populations more efficiently and at a lower cost. A major source of expense for the Medicare program is beneficiaries at end of life. Estimates of the percentage of Medicare costs that arise from patients in the last year of life differ, ranging from 13% to 25%, depending on methods and assumptions. We analyze the most recently available Medicare Limited Data Set to update prior studies of end-of-life costs and examine different methods of performing this calculation. Based upon these findings, we conclude that higher estimates that take into account the spending over the 12 months leading up to death more accurately reflect the full cost of a patient's last year of life. Comparing current year costs of decedents with Medicare's current year costs understates the full budgetary impact of end-of-life patients. Because risk-taking entities such as Medicare Advantage plans and Accountable Care Organizations (ACOs) need to reduce costs while improving the quality of care, they should initiate programs to better manage the care of patients with serious or advanced illness. We also calculate costs for beneficiaries dying in different settings and conclude that more effective use of palliative care and hospice benefits offers a lower cost, higher quality alternative for patients at end of life.
BACKGROUND: Dyspnea is commonly found in most conditions among patients with progressive noncancer disease.
OBJECTIVE: To clarify the effectiveness and safety of opioid administration for the treatment of dyspnea immediately before death in patients with noncancer disease.
METHODS: A retrospective case-series study involving 13 consecutive terminally ill patients who were near death and diagnosed with noncancer disease, and had refractory dyspnea and received opioid therapy, was performed. The authors investigated the route of administration, period, dosage of opioids, intensity of dyspnea-scored according to the Japanese version of the Support Team Assessment Schedule-and clinical course from a review of medical records.
RESULTS: The mean age of the patients was 86.5 ± 7.6years (range: 72-98years). The primary causes of dyspnea that led to opioid administration were heart failure (n = 10) and respiratory failure (n = 3). Oxycodone was used in one patient who experienced a complication of chronic renal failure; morphine was used in the other 12 patients. The route of opioid administration was continuous infusions in 11 patients, suppository in one, and oral administration in one. The final dose of oral morphine equivalents was 20.1 ± 8.1 mg/d (range: 5-36 mg [median: 18 mg]). All patients improved in symptom score after opioid administration. The score was significantly decreased from 3.2 ± 0.7 at the beginning of opioid administration to 1.2 ± 0.6 at final estimation ( P < .001). No severe adverse events occurred.
CONCLUSIONS:: Low-dose opioid administration in patients with terminally ill noncancer improved dyspnea and occurred no severe adverse events.
INTRODUCTION: Systematic integration of palliative care in a surgical setting is important, but has yet to be achieved. Despite evidence of early palliative care improving patients' quality of life, hospice utilization remains low. Through an integrated palliative care-urology clinic, we aim to assess the effect of early outpatient palliative care on hospice utilization, health-related quality of life (HRQOL) and satisfaction in patients with advanced urological cancers.
METHODS: Participants were recruited from 2012 through 2016 in the Greater Los Angeles Veterans Affairs Hospital. We partnered with palliative care clinicians to develop an integrated urology-palliative care clinic, where participants were seen by the palliative care team on the same day as their urological visit. The 12-item Short-Form Survey, Patient Satisfaction Questionnaire Short-Form, Patient Health Questionnaire, and Brief Pain Inventory were administered at initial and subsequent visits. Follow-up questionnaire results were compared between baseline and the 2 follow-up visits, and hospice utilization rates were assessed.
RESULTS: Fifty-three participants completed baseline questionnaires. Of those 22 (42%) patients completed at least one follow-up assessment. The median time for the first and second follow-up visits was 2.9 and 7.8 months, respectively. There were no significant differences in HRQOL and satisfaction between baseline and subsequent follow-up visits. A total of 36 (68%) of 53 participants who were enrolled at the start of the study were deceased. Of those, 29 (81%) expired within a home or inpatient hospice.
CONCLUSIONS: Rates of hospice use were high in an integrated palliative care-urology model. Health-related quality of life and satisfaction did not worsen over time.
BACKGROUND: Patient portals can offer patients an opportunity to engage in the advance care planning (ACP) process outside of clinical visits.
OBJECTIVE: To describe patient perspectives on use of patient portal-based ACP tools.
DESIGN: Interviews with patients who used portal-based ACP tools. The tools included an electronic Medical Durable Power of Attorney (MDPOA) form to designate a medical decision maker, a patient-centered educational web page, online messaging, and patient access to completed advance directives stored in the electronic health record (EHR).
SETTING: Regional health-care system with a common EHR.
MEASUREMENTS: Semistructured interviews with purposefully sampled patients who used the ACP tools. Questions explored motivations for using the tools and perceptions about how the tools fit into ACP. Analysis followed a grounded hermeneutic editing approach.
RESULTS: From 46 patients (mean age: 49, 63% female), 4 key themes emerged: (1) individualized explorations of the ACP tools, (2) personal initiation and engagement with ACP tools through the portal, (3) value of connecting ACP portal tools to clinical care, and (4) practicality of the ACP tools. Patients described benefits of communicating with health-care team members who referred them to online ACP tools, as well as having the electronic MDPOA form connected to clinical care.
CONCLUSIONS: Patients considered the portal-based ACP tools to be practical and feasible to use within the scope of their own ACP experiences. Further study is needed to understand whether portal-based ACP tools increase the quality and quantity of ACP conversations and documentation that is available to inform medical decision-making.
According to the World Health Organization, the main mission of palliative care is to optimize the quality of life of patients with serious chronic disease, as well as their caregivers, by providing biopsychosociospiritual care. However, historically, the primary focus of palliative care is on providing care only for cancer diseases. Based on the current literature, it is assumed that palliative care is not provided for many chronic diseases on a regular basis and in many cases, a clinical guideline does not exist for providing palliative care.
BACKGROUND: With the rapid growth in the number of fellowship programs in Hospice and Palliative Medicine (HPM), many are in the process of developing ways to demonstrate that fellows are attaining educational milestones. Reflection and self-assessment are key components of 2 Accreditation Council for Graduate Medical Education (ACGME) competencies, practice-based learning and improvement, and systems-based practice, which have both been historically challenging to learn and assess.
OBJECTIVE: This article describes results of a content analysis of narrative data collected from HPM fellows' self-assessments as they performed hospice home visits independently in a new clinical rotation.
DESIGN: This was a prospective qualitative study.
SETTINGS/PARTICIPANTS: Eight fellows completed 217 unsupervised hospice home visits from 2014 to 2016.
MEASUREMENTS: Fellows completed weekly self-assessment forms, which captured both clinical visit information and practice data elicited from responses to open-ended reflection prompts.
RESULTS: Analysis of 29 self-assessment forms generated 6 themes: patient- and family-centered care, self-efficacy, systems-based care, commitment to doing their best, catalyst for professional growth, and purpose and meaning in work. The fellows recognized numerous barriers distinct to providing care in homes. All fellows felt prepared to perform home visits throughout the rotation and after training.
CONCLUSIONS: Narrative data collected during the independent home visit rotation provided evidence that HPM fellows detected gaps in their performance, planned for practice improvements in subsequent visits, and valued working within an interprofessional team. Built-in opportunities for fellows to reflect during training are critical in meeting ACGME milestones, and are integral to their professional development.
Delivering comprehensive end-of-life care to dying patients must involve addressing physical symptoms and psychosocial concerns. Care pathways have been introduced to support health care teams in delivering this care. This retrospective chart review explores the contributions of the Spiritual Care Team in the care of dying patients. They offer a range of interventions which include supportive care, religious and spiritual support. This study was one step towards appreciating the contributions of the Spiritual Care Team.
CONTEXT: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS.
OBJECTIVE: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers.
METHODS: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS.
RESULTS: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease.
CONCLUSION: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.
CONTEXT: Taste and smell abnormalities (TSA) occur throughout the cancer trajectory regardless of cancer primary site and contribute to cancer-associated malnutrition. TSA etiology is poorly understood. Tumor-related inflammation is a possible cause.
OBJECTIVE: This study examined the prevalence, characteristics, and severity of TSA in advanced cancer and explored the relationship between TSA and nutritional status. No previous study combined subjective and objective measures for both taste and smell assessment in this population.
METHOD: Consecutive advanced cancer hospice patients were recruited. A modified version of the "Taste and Smell Survey" assessed subjective TSA. Validated taste strips and "Sniffin' Sticks" were the objective measures. The abridged patient-generated subjective global assessment evaluated nutritional status.
RESULTS: A 93% prevalence of TSA in 30 patients with advanced cancer was identified. When subjective and objective evaluations were combined, 28 had taste abnormalities, 24 smell abnormalities, and 24 both. Taste changes included "persistent bad taste" (n = 18) and changes in how basic tastes were perceived. Half reported smell was not "as strong" as prediagnosis, while more than half (n = 16) had an objective smell abnormality. Most (97%) were at risk of malnutrition. Fatigue, dry mouth, early satiety, and anorexia were common nutrition-impact symptoms. No statistically significant relationship was found between TSA and malnutrition scores.
CONCLUSIONS: TSA were highly prevalent. Subjective taste and smell changes did not always accord with objective TSA, suggesting both assessments are valuable. TSA characteristics varied, and particular foods tasted and smelled different and were not enjoyed as before. TSA are common, high-impact problems in advanced cancer.