Background/Aims: Numerous changes can occur between the original design plans for clinical trials, the submission of funding proposals, and the implementation of the clinical trial. In the hospice setting, environmental changes can present significant obstacles, which require changes to the original plan designs, recruitment, and staffing. The purpose of the study was to share lessons and problem-solving strategies that can assist in future hospice trials.
Methods: This study uses one hospice clinical trial as an exemplar to demonstrate challenges for clinical trial research in this setting. Using preliminary data collected during the first months of a trial, the research team details the many ways their current protocol reflects changes from the originally proposed plans. Experiences are used as an exemplar to address the following questions: 1) How do research environments change between the initial submission of a funding proposal and the eventual award? 2) How can investigators maintain the integrity of the research and accommodate unexpected changes in the research environment?
Results: The changing environment within the hospice setting required design, sampling, and recruitment changes within the first year. The decision-making process resulted in a stronger design with greater generalization. As a result of necessary protocol changes, the study results are positioned to be translational following the study conclusion.
Conclusion: Researchers would do well to review their protocol and statistics early in a clinical trial. They should be prepared for adjustments to accommodate market and environmental changes outside their control. Ongoing data monitoring, specifically related to recruitment, is advised.
Importance: Approximately 1 in 4 patients receiving maintenance dialysis for end-stage renal disease eventually stop treatment before death. Little is known about the association of stopping dialysis and quality of end-of-life care.
Objectives: To evaluate the association of stopping dialysis before death with family-rated quality of end-of-life care and whether this association differed according to receipt of hospice services at the time of death.
Design, Setting, and Participants: This survey study included data from 3369 patients who were treated with maintenance dialysis at 111 Department of Veterans Affairs medical centers and died between October 1, 2009, to September 30, 2015. Data set construction and analyses were conducted from September 2017 to July 2019.
Exposure: Cessation of dialysis treatment before death.
Main Outcomes and Measures: Bereaved Family Survey ratings.
Results: Among 3369 patients included, the mean (SD) age at death was 70.6 (10.2) years, and 3320 (98.5%) were male. Overall, 937 patients (27.8%) stopped dialysis before death and 2432 patients (72.2%) continued dialysis treatment until death. Patients who stopped dialysis were more likely to have been receiving hospice services at the time of death than patients who continued dialysis (544 patients [58.1%] vs 430 patients [17.7%]). Overall, 1701 patients (50.5%) had a family member who responded to the Bereaved Family Survey. In adjusted analyses, families were more likely to rate overall quality of end-of-life care as excellent if the patient had stopped dialysis (54.9% vs 45.9%; risk difference, 9.0% [95% CI, 3.3%-14.8%]; P = .002) or continued to receive dialysis but also received hospice services (60.5% vs 40.0%; risk difference, 20.5% [95% CI, 12.2%-28.9%]; P < .001).
Conclusions and Relevance: This survey study found that families rated overall quality of end-of-life care higher for patients who stopped dialysis before death or continued dialysis but received concurrent hospice services. More work to prepare patients for end-of-life decision-making and to expand access to hospice services may help to improve the quality of end-of-life care for patients with end-stage renal disease.
Background: Ketamine has been used as an adjuvant to opioid therapy for the management of refractory cancer pain but the current evidence is insufficient to draw any conclusions regarding its efficacy. We aimed to assess the response to ketamine in patients with refractory cancer pain treated in an oncology palliative care unit.
Methods: Patients with refractory cancer pain despite opioid dose escalation were selected for a trial of parenteral ketamine infusion according to a local protocol. The medical records of those patients treated between January 2004 and December 2018 were retrospectively reviewed. The primary endpoint of the study was a favorable response to ketamine, defined as a reduction in regular opioid dose with no increase in pain intensity or a reduction in pain intensity by =2 points on the numerical rating scale (NRS) with a stable regular opioid dose. The secondary endpoint was adverse events associated with ketamine.
Results: Among the 70 patients, mean pain score on NRS improved from 7.0 to 4.0 after ketamine (P<0.001). Forty-nine patients had a reduction of pain score by =2 points on NRS, 33 had =50% reduction in pain intensity. The median decrease in regular opioid dose was 25.5%, and the mean difference was -133.2 mg (P=0.002). A favorable response to ketamine was observed in 52 patients (74.3%). The use of more than one coanalgesic (odds ratio 3.451; 95% CI: 1.087–10.960; P=0.036) was associated with a favorable response to ketamine on multivariate analysis. Adverse events were mostly mild, with the commonest being drowsiness (45.7%), hypertension (34.3%) and nightmares (25.7%). Only five and three patients required temporary suspension and early termination of ketamine infusion respectively.
Conclusions: These data demonstrated the efficacy and safety of ketamine in a population of patients with refractory cancer pain. The use of more than one coanalgesic was associated with a favorable response to ketamine. Further large and multicentered studies are warranted to confirm these data.
Background: The palliative care unit is an emotionally challenging place where patients and their families may feel at loss. Art can allow the expression of complex feelings. We aimed to examine how cancer patients hospitalized in the palliative care unit experienced a musical intervention.
Methods: We conducted a qualitative study based on semi-structured interviews. The study took place in a palliative care unit from 18 January 2017 to 17 May 2017. Two artists performed in the palliative care unit once a week from 9:30 am to 5:30 pm. The data from patient interviews were analysed based on an inductive approach to the verbatim accounts.
Results: The accounts we gathered led us to weigh the positive emotions engendered by this musical intervention against the potential difficulties encountered. The artists opened a parenthesis in the care process and brought joy and well-being to the palliative care unit. Patients also encountered difficulties during the intervention: reference to an altered general state, to loss of autonomy; a sense of the effort required, of fatigue; an adaptation period; reference to the end of life, to death; a difficulty in choosing songs.
Conclusions: Although music appeared to benefit the patients, it sometimes reminded them of their altered state. The difficulties experienced by patients during the experience were also related to physical exhaustion. Additional studies are needed to determine the benefits of music for patients and their families in the palliative care unit.
Objectives: To consider the type and cost of clinical services delivered for patients with lymphoedema.
Design: Clinical cohort.
Setting: Independent hospices in the North East of England.
Participants All those attending lymphoedema services delivered by the independent hospice sector 2017/2018.
Results: 13 914 lymphoedema appointments were recorded across four independent hospices. Twelve thousand nine hundred and sixty-five were attended, which equates to an approximate cost of £1.56 million. Those with lymphoedema were predominately aged over 65 (54.5%) years with females across all age groups being more predominant (3.3:1). Where the cause was recorded, 66% of activity related to lymphoedema was not secondary to cancer.
Conclusion: Independent hospices are providing a specialist lymphoedema service, which is high in volume and largely invisible. This service is delivered at not insignificant cost. In contrast to previous work, in the North East of England, lymphoedema sufferers are more likely to be female and not have the condition in association with cancer. The availability of rigorous data collection will allow the independent hospices to understand better the delivery and associated costs of lymphoedema services.
BACKGROUND: This pilot study examined which of a patient's personal aspects should be taken into account in a hospital setting on admission to the palliative care unit (PCU) by asking patients the question "what should I know about you as a person to help me take the best care of you that I can?"
METHODS: This retrospective study used qualitative methodology to thematically analyze answers from 14 patients admitted to the PCU of the Medical University of Vienna during July and August 2018. The question "what should I know about you as a person to help me take the best care of you that I can?" was asked on the day of admission, notes were taken during the interview and the patient's answers were written out immediately afterwards. Data were analyzed using NVivo 12.
RESULTS: Results revealed four topics: characterization of one's personality, important activities, social bonding, and present and future concerns regarding the patient's illness. Data showed that this question enabled patients to describe themselves and what was important to them. This might result in an improved sense of self-esteem in patients and represents an opportunity for professionals to treat patients in a more individualized manner; however, patient reactions also revealed a reluctance to address certain personal issues within a medical context.
CONCLUSION: The study results provide insights into the benefits of paying more attention to personal life aspects of severely ill patients on admission to a PCU. Addressing individual aspects of patients' lives might improve the healthcare professional-patient relationship.
St Christopher’s Hospice, London, was founded to provide specialist care to the incurably ill. We studied the dimensions of difference that set St Christopher’s Hospice apart from hospital care of the dying, focusing on physical space and social organization. Material from 1953 to 1980 from the Cicely Saunders Archive was analyzed qualitatively. Through thematic analysis, quotes were found and analyzed using open coding. Five themes were developed. Themes identified were home/homelike, community, consideration of others, link with outside world, and privacy. The hospice philosophy functioned as the catalyst for the development of the physical environment of St Christopher’s Hospice. Taking Habermas’ concept of lifeworld, it seems that, in contrast to acute care, the need for hospice to formulate their own lifeworld to support and fully engage patients was central. As lifeworlds are culture sensitive, this underlines the need for variation in design and organization of hospices around the world.
I explore the complexities of moral experience during the phase of life after a terminal diagnosis by examining the experiences of one woman living as a hospice patient in St. Croix, US Virgin Islands. Introducing the notion of “existential ambivalence,” I show that this can be a period of deep uncertainty, in which what matters to individuals can shift and fluctuate through time, not necessarily lining up with collective ideals of “the good death.” I focus on a promise this woman made that continued to pull her toward a version of living well while she was also pulled toward dying.
Advanced heart failure therapies such as ventricular assist devices and home inotrope use are becoming more common. Technology advances as well as increased indications for use of such therapies is leading to a higher percentage of patients with end-stage heart failure receiving these therapies at end of life. We present a case of a young man with dilated cardiomyopathy who undergoes advanced cardiac care in the setting of progressively declining cardiac function. Our case outlines the importance of acute care, palliative care, and hospice services being coordinated prior to and during acute-care services to provide goal-concordant and expeditious care. With advancing medical therapies for heart disease, increased coordination and collaboration of services are needed, particularly between hospice and acute-care services.
Background: Oral problems are frequent in palliative care and can cause disabling symptoms such as orofacial pain, dysgeusia, and xerostomia. Even if oral care is an essential aspect of nursing, it is often not considered as a priority, especially when various complex patients? needs have to be managed.
Objective: The aim of this study was to describe oral conditions and evaluate the impact of standard oral care on symptom control and patient's perceived comfort in a sample of terminally ill patients.
Method: A prospective cohort study was carried out among 415 patients who were admitted to hospice. Patients were recruited before undergoing standard assisted procedure for oral hygiene care. Oral cavity condition, symptoms, and comfort were assessed at the recruitment (T0) and after 3 days (T2).
Results: Seventy-five eligible patients were recruited. The Oral Assessment Guide score was significantly decreased after oral standard care (P value <.0001). The average time spent by nursing staff for oral hygiene care was 5.3 minutes. Dysgeusia and xerostomia were significantly decreased after oral standard care (P = .02 and P = .03). Patients reported a high level of comfort (86.6%) after the procedures for oral hygiene care.
Conclusion: Patients admitted to hospice had frequent alterations in oral cavity with partial loss of its functions that can compromise their quality of life. Standard procedures for oral hygiene care are simple and fast to perform, and they may improve oral cavity conditions, symptoms control, and patients' comfort.
This study aimed to examine the reliability and validity of a scale to assess the competence of Korean nurses who provide spiritual care for patients with terminal illnesses. The reliability and validity were examined using Cronbach a, item analysis, and exploratory factor analysis. The participants were 248 hospice nurses working at 40 hospices and palliative hospitals in South Korea. The results showed that the reliability was high, as indicated by a Cronbach a of .942. The exploratory factor analysis revealed 6 dimensions (assessment and implementation of spiritual care, professionalization and improvement of the quality of spiritual care, personal support and patient counseling, referral to professionals, attitude toward the patient’s spirituality, and communication) with 27 items. The 6 factors explained 68.20% of the variance in the Korean version of the Spiritual Care Competence Scale. From the results, the Korean version of the Spiritual Care Competence Scale may serve as an appropriate measure for provision of spiritual care for patients with terminal illness. In addition, it may be useful in assessing hospice and palliative nurses’ ability for spiritual care.
OBJECTIVE: Patients admitted to hospice are more vulnerable to age-related physiologic changes, polypharmacy, and inappropriate medication use and monitoring. The objective of this study was to characterize the utilization of nonprescription medications in a hospice population.
METHODS: This was a retrospective study designed to characterize nonprescription or over-the-counter medication use in hospice patients. Data for this study were provided by Seasons Hospice & Palliative Care, a national hospice organization with licenses to operate in 19 states and collected from January 1 to December 31, 2016. The most frequently utilized nonprescription medications, therapeutic classes, and the frequency of patients with at least 1 claim within a therapeutic class were summarized.
RESULTS: The final study population included 62 639 orders representing 15 164 patients. The average age was 79.31 years with a standard deviation of 13.31 years. The average length of stay was 26.80 days with a standard deviation of 44.14 days. The top 5 most common medications were as follows: acetaminophen (25.15%), bisacodyl (21.69%), senna (8.35%), omeprazole (4.51%), and docusate (4.46%). Approximately 13 714 (29.67%) of patients were exposed to analgesics, 13 469 (29.14%) to laxatives, and 3535 (7.65%) to antacids or antigas medications.
CONCLUSION: This study highlights numerous opportunities for improvement in the use of nonprescription medications among hospice patients. Reducing the use of nonprescription medications that are ineffective or produce unwanted side effects can contribute to improving the quality of care that patients receive.
The problem of opioid diversion and its contribution to the opioid epidemic are well known nationally, existing even within hospice care. Proper disposal of opioids may be a critical factor in reducing diversion. In 2014, Ohio implemented legislation requiring a hospice employee to destroy or witness disposal of all unused opioids within a patient’s plan of care. The purpose of this study was to determine the impact of Ohio Revised Code 3712.062 on hospice programs’ policies and procedures to prevent opioid diversion in the home. Directors of Ohio-licensed hospices were surveyed to assess the percentage of programs with a written policy in place for disposal of opioids and to calculate a compliance score based on responses to survey questions assessing compliance with legislation components. Fifty-two surveys were completed (39.4%). All survey respondents reported having a written policy in place. A 95.5% average compliance score was calculated, with the largest disparity occurring with timing of opioid disposal. While Ohio Revised Code 3712.062 requires opioid disposal at the time of patient’s death or when no longer needed by the patient, only 84% of respondents report disposing opioids upon discontinuation. Overall, a high compliance rate was seen among hospice programs indicating such regulation is manageable to meet.
Job satisfaction among hospice and palliative nurses is important as turnover and a dissatisfied workforce impact the work environment and the care provided to seriously ill patients and their families. This article reports the results of a nationwide survey of 633 hospice and palliative nurses evaluating job satisfaction, intent to leave, job stressors, suggested work improvements, and self-care strategies. Statistically significant correlations were found between the Home Healthcare Job Satisfaction Scale and subscales and the individual’s self-rating of overall job satisfaction, likelihood of leaving the job, and thoughts of quitting. Multiple regression revealed a significant positive association between salary and overall job satisfaction, relationship with the organization, professional pride, autonomy, and control. A grounded theory approach was utilized to analyze qualitative data. Top job stressors identified were workload and problems with administration. Physical activities were cited as the most popular for self-care. Results indicate that most participants were highly satisfied with their work, but almost half think of quitting some or all of the time, indicating dissatisfaction with the work environment. Respondents suggested that employers increase recognition and salary, create a more positive work environment, decrease workload, and focus on patient needs rather than profits.
Introduction : au plan international, le concept de sédation palliative n’est pas défini de façon uniforme. En Suisse, il est encadré par les recommandations émises en 2005.
Contexte : la conceptualisation de la sédation palliative est susceptible d’être hétérogène chez les infirmiers , en raison de la diversité des protocoles développés localement, mais aussi, des expériences vécues, posant ainsi des difficultés épistémologiques et pratiques. Cette problématique, bien qu’indispensable pour bien circonscrire l’objet de futures recherches en la matière en Suisse, n’a pas été explorée dans la partie francophone de ce pays.
Objectifs : découvrir et décrire la conceptualisation de la sédation palliative par les infirmiers d’une unité de soins palliatifs en Suisse romande.
Méthode : recherche qualitative exploratoire avec entretiens compréhensifs individuels.
Résultats : la sédation palliative est considérée comme un traitement de dernier recours face à un/des symptôme(s) réfractaire(s). La recherche d’une dose minimale efficace et le caractère au moins initialement temporaire de la sédation sont les principaux éléments mis en avant par les infirmiers.
Discussion et conclusion : la conceptualisation de la sédation palliative est conforme aux recommandations suisses. Ces résultats constituent une base afin de développer une étude nationale en la matière.
Background: Use of hospice services among patients with pancreatic cancer following pancreatic resection remains unknown.
Methods: Patients with pancreatic cancer who underwent resection were identified in the Medicare Standard Analytic Files. Outcomes included overall hospice use, early hospice enrollment (=4 weeks before death), late hospice enrollment (initiation within 3 days of death), and Medicare expenditures.
Results: Among the 4369 deceased individuals, three-fourths of patients (n = 3252, 74.4%) used hospice at the time of death. Patients who did not use hospice were more likely to be male, have a complication on index admission and receive life sustaining treatments on subsequent admissions (P < .05). Only on-third (32.2%) of patients initiated hospice services early. Medicare expenditure during the last month of life was $10 000 lower among patients who initialized hospice services at least 1 month before death versus within 3 days of death (late: $10 581 [$5454-$17 200], early: $221 [$46-$733]; P < .001)
Conclusion: While three-fourths of patients utilized hospice services after pancreatic resection, only one-third of patients initiated hospice services at least one-month before death. Late hospice use was associated with higher Medicare expenditures during the last month of life. Further research is needed to understand barriers to early hospice utilization.
Background: Home hospice is designed to provide comfort to patients at the end of their life and hospital readmission is incongruent with this goal.
Objective: The purpose of this study was to investigate the incidence of and characteristics associated with hospital readmissions from home hospice over a two-year period.
Design/Subjects: This was a retrospective cohort study of 705 inpatients discharged from a quaternary academic medical center to home hospice from January 1, 2016 to December 31, 2017.
Measures: The primary outcome was incidence of hospital readmission after discharge to home hospice. Multivariate regression with stepwise forward selection was used to identify characteristics associated with readmission.
esults: The incidence of readmission was found to be 10.50% (n = 74), and the median days from discharge to readmission were 32.50 days (interquartile range = 14.00, 75.00). Reasons for readmission were: unanticipated new medical issue (n = 33, 44.59%), uncontrolled symptoms (n = 25, 33.78%), misunderstanding of hospice status (n = 12, 16.22%), and caregiver distress (n = 4, 5.41%). The following characteristics were associated with readmission: female versus male (odds ratio [OR] = 1.96; 95% confidence interval [CI]: 1.16–3.32), non-white versus white (OR = 2.40; 95% CI: 1.36–4.24), and hospice diagnosis of cardiac disease versus all other diagnoses (OR = 4.40; 95% CI: 2.06–9.37).
Conclusions: Compared with prior studies, our findings showed a lower incidence of readmission, 10.50%, from home hospice. In addition, those who are female, non-white, or have a hospice diagnosis of cardiac disease are more likely to be readmitted.
This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the "right to die" debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents.
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.
Purpose: In Korea, hospice palliative care (HPC) provision for cancer patients has increased recently. However, whether end of life (EoL) care practices have improved along with the development of HPC is unclear. We intended to investigate the changes in EoL care practices and their association with HPC referral.
Materials and Methods: Retrospective medical record review of adult cancer patients who died at National Cancer Center Korea from 1 January 2009 to 31 December 2014 was performed. Changes of EoL practices including chemotherapy within 2 weeks from death, death in intensive care unit (ICU), documentation of "do not resuscitate (DNR)" within 7 days from death and referral to HPC from 2009 to 2014 were analyzed as well as the association between referral to HPC and other practices.
Results: A total of 2,377 cases were included in the analysis. Between 2009 and 2014, referral to HPC increased and DNR documentation within 7 days from death decreased significantly. Cases for chemotherapy within 2 weeks from death and death in ICU didn't change over the study period. Patients referred to HPC were less likely to receive chemotherapy within 2 weeks from death, die in ICU and document DNR within 7 days from death.
Conclusion: During the study period, EoL practices among cancer patients partly changed toward less aggressive in our institution. HPC referral was associated with less aggressive cancer care at the EoL. Policies to promote EoL discussion are necessary to improve the EoL practices of cancer patients.