BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC).
METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area. Hospital data was combined with nationwide mortality databases. Complete data were collected and checked from clinical records, including first referral to PC, chemotherapy within 14 days of death, >=1 intensive care unit (ICU) admission, >=2 emergency department visits (ED), and >= 2 hospitalizations, all within 30 days of death.
RESULTS: Overall (min-max) indicator values as reported by facility providing care rather than the place of death, were: 16% (8-25%) patients received chemotherapy within 14 days of death, 16% (6-32%) had >=2 admissions to acute care, 6% (0-15%) had >=2 emergency visits and 18% (4-35%) had >=1 intensive care unit admission(s). Only 53% of these patients met the PC team, and the median (min-max) time between the first intervention of the PC team and death was 41 (17-112) days. The introduction of PC > 30 days before death was independently associated with lower intensity of care.
CONCLUSIONS: Aggressiveness of end-of-life cancer care is highly variable across centres. This validates the use of indicators to monitor integrated PC in oncology. Disseminating a quality audit-feedback cycle should contribute to a shared view of appropriate end-of-life care objectives, and foster action for improvement among care providers.
Les soins palliatifs sont encore souvent mal connus tant du grand public que des professionnels de santé. Sous un abord psychanalytique, cet ouvrage propose d'en dessiner les contours. Il en pose les jalons, décrit la fonction d'accompagnant de la personne en fin de vie et offre des pistes de compréhension des principales problématiques par l'exposé d'une clinique variée. Illustré de nombreux exemples, il offre les outils à tous les intervenants pour une meilleure prise en charge du patient, et de son entourage.
Opiophobia is one of the principal causes of opioids' under-prescription in palliative care. From periods of abuse to times where their use was banned - which is still the case in some countries - the history of opioids is complex and it partially explains opiophobia. One of the main concern about the use of opioids is the risk of -dependence. Furthermore, scientific literature is not clear on this subject, in particular due to the fact that the scientific community has not yet come to an agreement on the terminology. This article shows, on the basis of specific studies, the predominance of opiophobia among the population and it outlines an historic overview of the use of opioids. In the last section, it focuses on the concept of dependence and the difficulty of measuring it in chronic opioid therapies.
INTRODUCTION: Myocardial infarction (MI) remains a leading cause of mortality. Palliative care (PC) has recently expanded in scope to include noncancer-related conditions. There is little data available regarding the use of PC in critical MI patients.
METHODS: We used discharge data from the National Inpatient Sample for the years 2012 to 2014. We examined discharges with a primary diagnosis of MI. We measured the rate of PC referral, trend in utilization during the study period and possible predictors of PC utilization.
RESULTS: Among 1 667 520 discharges of those patients =18 years of age and with a primary diagnosis of MI, use of PC was seen in 2.5% of all patients and in 24% of patients who died. In a multivariable logistic regression, we found the presence of cancer, cardiogenic shock, dementia, stroke, hemiplegia, the use of circulatory support, and mechanical ventilation were associated with higher likelihood of PC referral. Palliative care referral increased during the study period, odds ratio of 1.18 per year (95% confidence interval: 1.14-1.21; P value <.001). Palliative care was not associated with prolonged length of stay.
CONCLUSION: Several comorbidities were associated with the use of PC, most notably the use of mechanical ventilation and the presence of metastatic cancer. There was a trend of increasing use of PC during the study period.
Experts estimate that over 25 million Americans are in recovery from addiction to alcohol and other drugs. Many will be confronted with a serious progressive illness necessitating palliative care or hospice services. In current literature, substance use disorder has mostly been examined in relation to appropriate symptom assessment and management, opioid risk screening, and controlled substance prescribing practices. However, as hospice and palliative care (HPC) clinicians strive to provide whole person care for the seriously ill, awareness and facilitation of healthy psychosocial-spiritual coping strategies for recovering addicts should enhance such care. One of the more common support mechanisms to support recovery is the 12-step program, based on Alcoholics Anonymous. Twelve-step programs have been shown to provide effective coping strategies, not only to help facilitate ongoing abstinence but also to support other psychosocial-spiritual crises. The HPC providers may help to serve those living with addiction disorders better by assessing not only patient histories of substance use/abuse and other addictive behaviors but by facilitating their ongoing support recovery efforts. Here, we use 2 HPC cases to illustrate the value of 12-step recovery programs in patient support and provide recommendations for enhancing such healthy coping in HPC clinical settings.
OBJECTIVES: Recent evidence suggests that music therapy, a holistic method of care, potentially is beneficial for symptom management. This quality improvement project aimed to evaluate the effect of music therapy on symptom management and coping skills of patients receiving palliative care and to measure patient satisfaction with the therapy. A secondary aim was to evaluate staff perception of patient outcomes of music therapy services.
METHODS: Palliative care clinicians attended a 30-minute education session on music therapy before the project was initiated. Study participants were patients and their families who were cared for by the inpatient palliative care consulting service at Mayo Clinic (Rochester, Minnesota) from June 1 through December 31, 2016. Patients were eligible if they required ongoing management of pain and anxiety or needed adaptive coping strategies. Patients and families were asked to complete a survey after each music therapy session. Staff were asked to complete a survey after completion of the project.
RESULTS:: Music therapy was provided to 57 patients and 53 family members. Patient surveys indicated a decrease in anxiety and pain. All patients reported that music therapy facilitated stress relief, relaxation, pain relief, spiritual support, emotional support, and a general feeling of wellness. All participants recommended music therapy services for others. Palliative care clinicians reported that music therapy added value as a holistic service.
CONCLUSIONS:: In this quality improvement project, music therapy positively affected multiple domains of well-being for patients receiving palliative care.
Palliative care was first developed for patients with terminal cancer. According to the definition of World Health Organization (WHO), palliative care is “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness.” (WHO, 2019a). Based on WHO’s statistics, the number of deaths caused by chronic non-cancer conditions is far more higher than by terminal cancer (WHO, 2019b). Although the benefits of providing palliative care to non-cancer patients have been increasingly recognized, compared to cancer patients, the use of palliative services among patients with non-cancer diseases is extremely low and the timing of referrals is typically late (Gadoud et al., 2014 ; Zheng et al., 2013). A survey in Scotland showed that, at death, only 20% of non-cancer patients had been formally referred for palliative care compared with 75% of cancer patients (Zheng et al., 2013). Although Taiwan is the highest-ranked Asian country on the 2015 Quality of Death Index, the percentage of non-cancer patients receiving palliative care service in Taiwan falls below the 20% noted in the Scotland survey.
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.
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.
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.
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.
Despite the frequency, complexity, and intensity of communication that occurs between nurses, patients, and families, palliative care nurses often struggle with end-of-life communication. The primary goal of this quality improvement project was to increase nurse confidence and satisfaction engaging in end-of-life communication following the implementation of the COMFORT model; the secondary goal was to improve patient-family satisfaction with care provided in the palliative care unit. Fourteen palliative care nurses attended a 4-hour course to learn the tenets of the COMFORT model and practice through role-play exercises. A repeated-measures design was used to measure nurse confidence and satisfaction precourse, postcourse, and 3 months postcourse. A between-subjects pre-post design was used to compare family satisfaction survey scores in the 3-month period before versus the 3 months after implementation. Analysis revealed a statistically significant increase in all measures of nurse confidence and satisfaction from precourse to postcourse and from precourse to 3 months postcourse. There was no statistical difference between the family satisfaction survey scores before versus after training, although survey results were generally high at baseline and most respondents rated palliative services with the best possible response. This project demonstrates that COMFORT model training increased confidence and satisfaction of palliative care nurses engaged in end-of-life communication and demonstrates potential for use in other clinical areas that do not specialize in end-of-life nursing (eg, critical care) but find themselves in need of the communications skills to address end-of-life care.
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. Results of past studies demonstrated this Strengths Guide (SG) interview to be an intervention bringing a heightened realization of the importance and utilization of one's inner strengths. The purpose of this study was to assess the long-term impact of this SG with a population of parents who participated in a previous study using the SG. This descriptive study was conducted using a quantitative tool, the Personal Strength Rating Scale, comparing the post-SG interview results with those results obtained 3 years later. Participants in this study were parents caring for a child receiving palliative/hospice care at home in Kenya. Results revealed the long-term retention of strengths following the SG interview 3 years previously was, for most sources of strength, equal to or greater than those obtained immediately following the SG.
For patients receiving palliative care, expressing a preferred place of death (PPD) reduces anxiety and depression and increases the likelihood of achieving their preference. However, during the course of a life-limiting illness, patients commonly change their PPD at least once prior to death. The aim of this study was to identify the pattern and timing of how patients (and families) receiving specialist palliative care change their PPD over time. A retrospective chart audit was conducted of patients who died over a 7-month period whilst in the care of a metropolitan-based Community Specialist Palliative Care Service where PPD is routinely recorded every time a discussion on the topic occurs. These discussions are triggered by various factors which highlight the need to re-assess or confirm PPD. Results showed that 80% of patients achieved their PPD. There was no change to PPD in 64% of patients after the initial assessment, while 36% changed preferences once (27%), twice (8%) or three times (1%). Symptom management (10%) and family requests (30%) were cited as reasons for changing PPD. This study highlights that providers should revisit end-of-life discussions with patients along the disease trajectory and facilitate the consideration of all possible places for a good and safe death and the different scenarios that may influence patient decisions.
Nurses have unique clinical responsibilities and opportunities with patients that require strong communication skills. However, many nurses lack effective communication skills and often receive inadequate palliative care communication training and education. To promote communication education for palliative care nurses, the End-of-Life Nursing and Education Consortium created a Communication Curriculum for nurses and developed an in-person train-the-trainer course. Organized by the 8 domains of the National Consensus Project Guidelines for Quality Palliative Care, a 1-day course was provided in August 2018 to 46 nurses representing 38 institutions. Completion of precourse surveys demonstrated participants’ institutional resources for palliative care communication education and their greatest communication challenges. Immediate postcourse evaluations demonstrated that the course improved nurses’ knowledge and confidence in communication and their ability to educate others. Palliative care nurses can incorporate communication skills into their practice and provide communication skills training to their institution.