Background: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed.
Methods: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software.
Results: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure.
Conclusion: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.
Nurses play an integral role in high-quality patient care. Thus, their skills in providing end-of-life care should be assessed and continually enhanced. Education intended to improve end-of-life skills must address the affective/emotional component of nursing care. Evidence demonstrates that emotional engagement and resilience among health care providers are correlated with improved quality outcomes and, conversely, that burnout and stress negatively affect patient safety. Addressing the emotional needs of health care providers is critical to improving quality throughout the health care system. An evidence-based workshop was implemented among direct care staff on a hospital-based palliative care unit, with the goal of fostering emotional engagement to improve staff perceptions and attitudes about caring for patients at or near the end of life. Although perceptions about quality of death were not affected by this intervention, there was a significant improvement in attitudes about end-of-life nursing care. Qualitative feedback also reflected appreciation for small group discussions and opportunities to debrief with peers away from the unit. This intervention reflected the value of emotional engagement in educational efforts to improve end-of-life nursing care.
Witnessing end-of-life suffering of loved ones is an underappreciated stressor that may affect caregiver bereavement. We interviewed 61 spousal caregivers of hospice patients who died within the past 6–18 months. Higher rumination about suffering and lower feelings of relief was related to poorer well-being. Rumination by caregivers about end-of-life suffering was an important predictor of depression and complicated grief. Most caregivers viewed the death as at least in part a relief. One important focus of grief support may be to help caregivers find productive ways to avoid rumination and use other forms of coping and to acknowledge feelings of relief.
As hospice and palliative care populations shift from the majority having a primary cancer diagnosis to most with a noncancer diagnosis, clinicians are challenged with caring for chronically ill patients with multiple comorbidities. In addition to traditional pain and symptom management, patients’ comfort goals are frequently addressed by managing the underlying disease and comorbid conditions. As a result, many patients have extensive medication profiles. This raises the potential for drug-drug interactions at cytochrome P450 pathways that can interfere with anticipated drug response. Likewise, polypharmacy can be problematic when using palliative care order sets and hospice comfort kits to manage emergent symptoms or as the patient approaches death. This is further complicated when medications are administered before a pharmacist’s review for drug interactions. This article provides an overview of cytochrome P450 and uses an unfolding case study approach to explore interactions that may occur within a patient’s medication profile or in combination with medications commonly used by palliative care and hospice.
In this retrospective study, determinants of unbearable suffering in hospice patients who died due to euthanasia were analyzed. The four dimensions of suffering (physical, psychological, social, and existential) were used as a framework. 28 patients (5% of all admitted patients in nine years) were included. Most patients indicated 3–5 determinants, predominantly a combination of physical (96% of patients) and existential determinants (89%). Fatigue, anorexia, and dry mouth were the most prevalent and severe symptoms. Psychological (21%) and social determinants (4%) were much less often described. The results of this study may be used to assess determinants playing a role in euthanasia requests.
Canuck Place Children’s Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians’ perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians’ perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy’s potential role in the support of children, families, and staff within a hospice setting.
The end-of-life needs of people who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ) are in many ways identical to those of non-LGBTQ people; however, for a variety of reasons, they are at risk of receiving suboptimal care, irrespective of whether they are being cared for at home or in a nursing home, hospital, or hospice. Although research on the needs of LGBTQ people at the end of life is sparse, drawing on what is available this article explores some of their unique concerns that practitioners should consider during their interactions.
At the end of life, patients with cancer can continue to require intensive intervention to alleviate symptoms. When enrolled in hospice, however, they may find expensive treatment modalities, even those administered with palliative intent, inaccessible. This is because current reimbursement artificially divides the continuum of disease management into arbitrary phases of care: Medicare parts A, B and D for curative therapy and the Medicare Hospice Benefit for hospice care. The mechanism of reimbursement can disproportionately dictate availability and access to certain types of care. This is problematic because some treatment modalities (eg, diuretics for heart failure) can span both phases, and many palliative therapies have been empirically shown to improve quality of life and lengthen life. We use palliative radiotherapy as an example to illustrate some of the unintended consequences of this approach.
BACKGROUND: Charitable donations play a major role in the provision of hospice and palliative care (HPC) services, most of which are not reimbursed by health insurance programs. A good understanding of the constitution and use of donations is thus conducive to maintaining a high-quality HPC unit.
METHODS: The data sources were the publicly available balance sheet, work report, and donor lists of a foundation exclusively supporting one of the best HPC units in Taiwan in the fiscal year of 2017. The analysis included the donation amounts and frequencies by donor type (individual, corporate, and group) and the categories of expenses.
RESULTS: The foundation received 3033 donations worth a total of 7.8 million New Taiwan dollars (NTD) (approximately 258 thousand US dollars) in 2017. Two-thirds of the donations were allocated to the provision of direct care services. Of the 3033 donations, only 11 (0.4%) were worth 100 000 NTD or more, while 108 (3.6%) were valued between 10 000 and 99 999 NTD, 1268 (41.8%) were valued between 1000 and 9999 NTD, and 1646 (54.2%) were worth less than 1000 NTD. Of 1051 donors, 974 (92.7%) were individuals, 378 (36.0%) donated more than once, and 106 (10.1%) donated 12 or more times in one year.
CONCLUSION: HPC services in Taiwan are sponsored by lots of individuals and small donations. For sustainability of standards-based and quality HPC services, the benevolence of the public should be thus cherished and adequately responded to.
PURPOSE: The purpose of this paper is to explore and examine attitudes and perceptions of leaders on application of quality improvement (QI) strategies in a palliative and hospice care organization.
DESIGN/METHODOLOGY/APPROACH: This study employed qualitative research methodology where leaders working in a hospice and palliative care organization were invited to participate in 45-60-min-long semi-structured interview. Interviews were recorded and transcribed verbatim. Qualitative content analysis was utilized to analyze the data collected during participant interviews.
FINDINGS: Seven leaders participated in the interviews. Five themes were developed from data analysis: patient-centered care; continuous QI; leadership involvement and commitment; communication as a foundation for QI; and perceived barriers. Data analysis suggests that use of QI approach in palliative and hospice care enhances the quality of care provided for patients, and can help improve patient satisfaction.
PRACTICAL IMPLICATIONS: Because there is a paucity of research on implementation of QI strategies in hospice and palliative care settings, this research can have wide practical implications. This research can provide useful practical tips to leaders as they work on implementing QI projects in their organization.
ORIGINALITY/VALUE: This manuscript can be of value to leaders, administrators and academicians who are interested in applying QI principles to healthcare processes especially in palliative and hospice care settings. Ability to work with others, solid communication and involvement of employees from all levels can help in streamlining current systems of care.
Background: The work continuity of physicians in hospice and palliative medicine (HPM) has a great impact on the quality of care and practice experiences. However, nationwide studies providing a general overview of the work continuity of HPM physicians are scarce.
Methods: Data relating to inpatient HPM care provided from July 2000 to December 2013 were obtained from the National Health Insurance Research Database of Taiwan. Specifically, the numbers of hospitals, patients, patient hospitalization days, and physicians involving HPM in each year were calculated. The years of HPM work experience and total HPM workdays of each physician were also computed.
Results: Of the 40,965,153 inpatient records during the study, 121,258 (0.3%) records were related to inpatient HPM care, with 60 participating hospitals and 604 attending physicians. The annual number of HPM physicians increased with time from 77 in 2000 to 217 in 2013. The largest percentage (38.4%) of physicians practiced HPM for only one year, while only 23 (3.8%) physicians practiced HPM in each year without interruption. Of the 217 HPM physicians in 2013, 45 (20.7%) were newcomers, 78 (36.0%) had 1-4 years of prior HPM work experience, 54 (24.9%) had 5-9 years, and 40 (18.4%) had at least 10 years. Conclusions: Among HPM physicians in Taiwan, only a small percentage exhibited long-term dedication to the field, whereas most HPM physicians had short practice periods. More strategies are needed to improve work continuity among HPM physicians.
BACKGROUND: Resilience is important to sustain hospice nurses through a challenging career. Clinical supervision is a commonly cited support strategy, but there is limited evidence which focuses on its influence on the development of resilience in hospice nurses.
AIMS: To explore how group clinical supervision might affect the development of resilience in hospice nurses.
METHOD: A pragmatic approach and mixed methods research design was employed. Quantitative questionnaire data and qualitative focus group data were collected from community hospice nurses participating in group clinical supervision.
FINDINGS: The findings identified the importance of an effective group reflective process on the benefits to be gained from clinical supervision. Clinical supervision was found to affect the development of resilience by developing confidence at work, regulating emotions, offering a coping strategy, managing expectations, and developing self-awareness. This was dependent upon individual preference and experience, the local organisational context, and wider social and political factors.
CONCLUSION: This research contributes insight into group clinical supervision as an intervention to support resilience in hospice nurses. It offers recommendations for practice, to enhance the development of resilience through clinical supervision, and recommendations for future research.
BACKGROUND AND AIMS: The highest healthcare expenditures occur towards end of life. Costs relate to hospital admissions and investigations to diagnose, prognosticate and direct treatment. This Australian study compared cost of investigations in the last 72 h of life between an inpatient palliative care unit (PCU) and a tertiary hospital.
METHOD: We retrospectively reviewed fifty adult medical and surgical patients (admitted for >72 h and who died in hospital) from the PCU and referring tertiary centre, between March and July 2016. Patients in the emergency department, intensive care, medical assessment, paediatric and obstetric units were excluded. All patients had an acute resuscitation plan and were on the 'Care of the Dying' pathway.
RESULTS: Expenditure was less if palliative care were the primary caregivers, with statistically significant differences in amount of imaging (p < 0.001) and pathology (p < 0.001) ordered. There was no difference in microbiology (p = 0.172) and histology (p~1) ordered. Total cost of investigations for PCU patients was $1340.60 (4 of 50 patients), compared with $9467.78 (29 of 50 patients) in the tertiary hospital. PCU patients had longer length of stays (15.54 days vs 11.06 days) but cost less per bed day ($868.32 vs $878.79 respectively).
CONCLUSION: Inpatient PCUs are less likely to order investigations and are more cost-effective. A prospective study comparing an inpatient PCU, and patients at a tertiary centre, with and without consult liaison palliative care input, would be worthwhile to see if outcomes remain the same and if consult liaison palliative care affects the investigative burden.
Période de vulnérabilité, la fin de vie est marquée par une appétence relationnelle des malades, qui concerne l’entourage, les soignants mais aussi éventuellement un animal, celui du malade ou inscrit dans un projet de service de médiation animale. Un tel projet a été mis en place au sein de l’unité de soins palliatifs, dont l’un des volets est relatif à la présence d’un chat résident permanent de l’unité. L’impact de sa présence a été étudié par un questionnaire de satisfaction auprès des patients et des familles. Trente-six questionnaires sur une période de trois mois ont été étudiés. Les résultats montrent que la chatte a fréquenté presque toutes les chambres et circulé dans les parties communes. Patients et entourage ont des eu interactions avec elle, sous forme de caresses. Elle a apporté distraction, détente et réconfort pour plus de la moitié des personnes interrogées, et dans une moindre mesure diminution de l’anxiété. La satisfaction globale a été majeure : 84,4 % des personnes ont estimé la présence de la chatte très satisfaisante et 15,6 % satisfaisante. Les limites étaient notamment la faiblesse de l’échantillon et la brièveté de la période d’étude. D’autres items auraient pu être étudiés : impact sur l’humeur, la fatigue, l’appétit, la perception de l’état de santé. L’impact sur les soignants serait une autre piste de réflexion.
Palliative and hospice care remain underused for patients with heart failure. In the next phase of serious-illness care, care delivery innovations can help providers integrate approaches to improving functioning and quality of life into the care of such patients.
BACKGROUND: Volunteers are expected to play a key role in children's hospice. However, there is a lack of information about how to cultivate effective volunteer training programs.
OBJECTIVE: To verify the effect of a training program on volunteers' confidence in providing learning support and sharing experiences with children with life-threatening conditions and their families in a children's hospice.
METHODS: In this pre-post study, participants were 48 undergraduate and graduate students from 3 universities in Japan. They received 5 lectures on children's hospice learning support. They evaluated the training program by rating their self-confidence in meeting each of the 15 program goals on a questionnaire.
RESULTS: An exploratory factor analysis of the questionnaire yielded 12 goals in 4 factors: understanding of one's own and others' mental state, accommodating the learning needs of children with life-threatening conditions, understanding and accommodating the physical state of children with life-threatening conditions, and understanding the significance of children's hospice. A paired t test revealed that participants' self-confidence had increased significantly in 3 of these 4 factors after the program. However, the score for accommodating the learning needs of children with life-threatening conditions decreased but not significantly.
CONCLUSION: Although it needs some improvements, the program was effective for improving volunteers' self-confidence in and understanding of learning support and sharing experiences with children with life-threatening conditions.
Hospice care emerged in mainland China in 1988, 30 years ago, but its development since that time has been slow. In 1994, the Ministry of Health listed hospice care into the Catalogue of Diagnostic and Therapeutic Subjects of Medical Institutions, but the public’s awareness of hospice and palliative care and the supply of it are still limited. Large numbers of people still die in acute hospitals. In recent years, hospice and palliative care has witnessed rapid development: in February 2017, the State Health Planning Commission issued a guideline for hospice care, which began to promote the work of hospice care nationwide. In May of 2019, the second batch of national pilot work on hospice care were chosen, 71 regions including whole area of Shanghai are being involved in developing local hospice care service.
Novel immune-based cancer therapies such as programmed death 1 (PD-1) inhibitors continue to emerge for both curative and palliative intent. Post-market data of PD-1 inhibitors indicate that there are a wide range of side effects associated with these drugs, including ones that have relevance to symptom control and represent a diagnostic challenge at the end of life. We present a case of pembrolizumab-induced hypothyroidism causing extreme fatigue and persistent hypoglycemia.
Clinical pharmacy interventions have been shown to improve medication therapy, prevent undesirable side effects, and improve patients' clinical outcomes in a number of settings; however, limited data exist to characterize clinical pharmacy specialist (CPS) providers' interventions in an inpatient hospice Veteran Affairs (VA) setting. The primary objective of this quality improvement (QI) project was to quantify the number and types of pharmacy interventions implemented from the Pharmacists Achieve Results with Medications Documentation (PhARMD) tool for inpatient hospice patient encounters in a VA medical center. A total of 453 interventions during 185 patient care encounters were documented by CPS providers between September 1, 2016, and December 31, 2016. These interventions were documented across 32 unique patients, with an average of 14.2 interventions made per patient during this period. CPS providers frequently intervened to optimize pharmacotherapy for the treatment of pain (42.38%), terminal agitation (5.08%), and nausea (3.97%). Additionally, CPS providers played a significant role in the deprescribing of medication by discontinuing drugs no longer indicated (18.3%). These results substantiate the valuable contribution to patient care that the CPS providers make in optimizing symptom management and deprescribing at end-of-life. Future studies are needed to characterize the potential cost savings of CPS provider services in the inpatient hospice setting.
Background: Hospice is an effective end-of-life care approach for patients with incurable illnesses such as multiple myeloma; however, it has been historically underutilized. In addition to improving quality of life, hospice enrollment reduces healthcare spending in many incurable illnesses but this has been unstudied in the myeloma population to date.
Material and Methods: Retrospective analysis of myeloma cases diagnosed from 2007 to 2013 in the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked dataset. Included patients were: diagnosed at age 65 or older, received myeloma-directed therapy, had an overall survival >3 months, and were enrolled in Medicare the month preceding death. Costs included those paid by Medicare and patient copays during the 30 days preceding death.
Results: 2075 patients were included in the analysis. 56% were enrolled in hospice at end of life. Increasing age and female gender were associated with greater odds of hospice enrollment. Non-white race, Medicaid enrollment, and increasing comorbidities were associated with decreased odds. Hospice enrollment was associated with a $13,574 (p < .0001) decrease in costs; however, the maximal savings were observed by those enrolled >14 days prior to death.
Conclusion: While improving quality of life should be the ultimate reason for increasing hospice utilization among patients with myeloma, there seems to be considerable cost implications as well.