BACKGROUND: Although the culture in burns/critical care units is gradually evolving to support the delivery of palliative/end of life care, how clinicians experience the end of life phase in the burn unit remains minimally explored with a general lack of guidelines to support them.
AIM: To explore the end of life care experiences of burn care staff and ascertain how their experiences can facilitate the development of clinical guidelines.
DESIGN: Interpretive-descriptive qualitative approach with a sequential two phased multiple data collection strategies was employed (face to face semi-structured in-depth interviews and follow-up consultative meeting). Thematic analysis was used to analyze the data.
SETTING/PARTICIPANTS: The study was undertaken in a large teaching hospital in Ghana. Twenty burn care staff who had a minimum of 6 months working experience completed the interviews and 22 practitioners participated in the consultative meeting.
RESULTS: Experiences of burn care staff are complex with four themes emerging: (1) evaluating injury severity and prognostication, (2) nature of existing system of care, (3) perceived patient needs, and (4) considerations for palliative care in burns. Guidelines in this regard should focus on facilitating communication between the patient and family and staff, holistic symptom management at the end of life, and post-bereavement support for family members and burn care practitioners.
CONCLUSIONS: The end of life period in the burn unit is poorly defined coupled with prognostic uncertainty. Collaborative model of practice and further training are required to support the integration of palliative care in the burn unit.
In the Netherlands during the past decade, a growing number of people with dementia (PWDs) requested euthanasia, and each year more of such requests were granted. We aimed to get quantitative insights in problems and needs general practitioners (GPs) have when confronted with a euthanasia request by a person with dementia (PWD). A concept survey was composed. Expert validity of the survey was achieved through pilot testing A postal survey was sent to a random sample of 900 Dutch GPs, regardless their opinion on or practical experience with euthanasia. Collected data were analysed with descriptive statistics. Of 894 GPs, 423 (47.3%) completed the survey, of whom 176 (41.6%) had experience with euthanasia requests from PWDs. Emotional burden was reported most frequently (86; 52.8%), as well as feeling uncertain about the mental competence of the PWD (77; 47.2%), pressure by relatives (70; 42.9%) or the PWD (56; 34.4%), and uncertainty about handling advance euthanasia directives (AEDs) (43; 26.4%). GPs would appreciate more support by a SCEN physician (an independent physician for support, information and formal consultation around euthanasia). (291; 68.8%), a geriatric consultation team (185; 43.7%), the end-of-life clinic (184; 43.5%), or a palliative care consultation team (179; 42.3%). Surprisingly the need for moral deliberation was hardly mentioned. The reported burden and the rise in numbers and complexity of euthanasia requests from PWDs warrants primary care support by easier access to colleagues with expertise and training on end of life care needs of patients with dementia and their caregivers.
BACKGROUND: The need for improving knowledge and practice of palliative care delivered by health workers become an agenda in several countries. In order to measure the practice, an instrument is needed. The study analyzed the validity and reliability of the instrument to assess the physician's practice in the management of patients with terminal diseases.
METHODS: This was a cross-sectional study involving 89 physicians practicing in primary health care. The instrument of practice has been developed and resulted 5 domains consist of 20 items. An overview of reliability, construct validity, uni-dimensionality, and hierarchy of the person-items of the instrument were analyzed using Rasch Model.
RESULTS: The reliability of the instrument is excellent with a person measure reliability of 0.85 and the item measure reliability of 0.96. Construct validity is confirmed with the MNSQ outfit values in the range of 0.54 to 1.59 and Pt Measure Corr. values in the range of 0.31 to 0.8. This instrument has a value of more than 20% unidimensionality which indicates the level of independence for items is good.
CONCLUSION: The instrument has good validity and reliability to assess physician's practice in the management of patients with terminal disease.
A palliative approach to care focuses on what matters most to patients with life-limiting illness, including chronic kidney disease (CKD). Despite recent publication of related clinical practice guidelines in nephrology, there is limited information about how to practically implement these recommendations. In this Perspective, we describe our experience integrating a palliative approach within routine care of patients with CKD G4-G5 across a provincial kidney care network over the past 15 years. The effort was led by a multidisciplinary group, tasked with building capacity and developing tools and resources for practical integration within a provincial network structure. We used an evidence-based framework that includes recommendations for four pillars of palliative care to guide our work: 1) patient identification, 2) advance care planning, 3) symptom assessment & management, and 4) caring of the dying patient & bereavement. Activities within each pillar have been iteratively implemented across all kidney care programs using existing committees and organizational structures. Key quality indicators were used to guide strategic planning and improvement. We supported culture change through use of multiple strategies simultaneously. Altogether, we established and integrated palliative care activities into routine CKD G4-G5 care, across the continuum from non-dialysis to dialysis populations.
PURPOSE: End-of-life cancer care varies widely, and very few centers evaluate it systematically. Our objective was to assess indicators of the aggressiveness of end-of-life cancer care in clinical practice.
METHODS: An observational, longitudinal, and retrospective cohort study was conducted at a tertiary hospital. Eligible patients were at least 18 years old, had a solid tumor, were followed up by the Oncology Department, and had died because of cancer or associated complications during 2017. We used the criteria of Earle et al. (J Clin Oncol 21(6):1133-1138, 2003) to assess the aggressiveness of care. Multivariate logistic regression analyses were performed to characterize factors associated with aggressiveness of therapy.
RESULTS: The study population comprised 684 patients. Eighty-eight patients (12.9%) received anti-cancer treatment during the last 14 days of their lives, and 62 patients (9.1%) started a new treatment line in the last 30 days. During the last month of life, 102 patients (14.9%) visited the ER, 80 patients (11.7%) were hospitalized more than once, and 26 (3.8%) were admitted to the ICU. A total of 326 patients (47.7%) died in the acute care unit. A total of 417 patients (61.0%) were followed by the Palliative Care Unit, and in 54 cases (13.0%), this care started during the last 3 days of life.
CONCLUSIONS: The use of anti-cancer therapies and health care services in our clinical practice, except for the ICU, did not meet the Earle criteria for high-quality care. Concerning hospice care, more than half of the patients received hospice services before death, although in some cases, this care started close to the time of death.
Les unités de soins palliatifs françaises peuvent accueillir des patients en phase terminale de leur maladie, mais aussi des patients qui bénéficient encore de traitement spécifique pouvant stabiliser la maladie à long terme. Or, nous ignorons comment ces soins palliatifs, qui cohabitent avec des traitements spécifiques de la pathologie et pouvant stabiliser la maladie à plus ou moins long terme, se pratiquent par les médecins qui travaillent dans ces unités d’hospitalisation. Nous avons mené une étude qualitative avec des professionnels médicaux et paramédicaux d’une USP française afin de décrire la pratique médicale en unité de soins palliatifs. Quatre « focus-groups » ont été menés avec 3 professionnels médicaux et 4 avec 11 professionnels paramédicaux. Les compétences réflexive et analytique étaient prépondérantes dans le discours des interviewés. Si l’incertitude n’était pas expressément nommée dans notre étude, elle était présente dans chaque geste ou comportement visant à comprendre la singularité du patient. Cette étude originale contribue à comprendre comment sont mis en œuvre les soins palliatifs en situation d’incertitude médicale.
The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with life-threatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement.
Background: Options available to Canadians at the end of life increased with the legalization of medical assistance in dying (MAiD). Bill C-14 modified the Canadian Criminal Code allowing individuals who meet very specific criteria to receive a medical intervention to hasten their death. June 2019 marked 3 years since the legislation has changed and while met with favour from most Canadians who believe it will provide enhanced options for quality of life at the end of life, there remains much debate over both its moral implications and practical components. Little is known regarding the Canadian healthcare provider experience with MAiD, in particular in rural and remote parts of the country such as northwestern Ontario.
Objectives: The purpose of this study was to explore physicians' experiences in Northwestern Ontario with MAiD. The geographic location of this study is of particular significance as physicians in rural and remote parts of Canada face unique challenges in the provision of high-quality palliative and end-of-life services. This qualitative research focused on developing a better understanding of physicians' perceptions and practices with MAiD, in particular regarding access, decision-making, provision of service and role clarity.
Methods: The researchers employed an exploratory qualitative research approach, using 1 semi-structured focus group and 18 semi-structured interviews comprising 9 set of questions. Data were collected through audio-taped semi-structured interviews, in person and by telephone.
Findings: Four distinct but interconnected themes emerged from thematic analysis of the transcripts of the focus group and interviews: physician perception of patient awareness, appreciation and understanding of MAiD; challenges providing true choice at end of life; burgeoning relationships between palliative care and MAiD; and physician recommendations.
Conclusion: The results of this study provide a snapshot of the Northwestern physician experiences with MAiD and contribute to the growing body of work exploring these issues on a national scale. MAiD is highlighted as both a rewarding and challenging experience for physicians in Northwestern Ontario in this study.
The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence-based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a "good death". This new position paper aims to provide day-to-day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline-directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure.
INTRODUCTION: Patient demographics demand physicians who are competent in and embrace palliative care as part of their professional identity. Published literature describes ways that learners acquire knowledge, skills and attitudes for palliative care. These studies are, however, limited by their focus on the individual where learning is about acquisition. Viewing learning as a process of becoming through the interplay of individual, social relationships and cultures, offers a novel perspective from which to explore the affordances for professional identity development.
METHODS: Qualitative narrative methods were used to explore 45 narratives of memorable learning (NMLs) for palliative care recounted by 14 graduating family medicine residents in one family medicine residency program. Thematic and narrative analyses identified the affordances that support and constrain the dynamic emergence of professional identity.
RESULTS: Participants recounted affordances that supported and/or constrained their learning acting on personal (e.g. past experiences of death), interpersonal (e.g. professional support) and systemic (e.g. patient continuity) levels. Opportunities for developing professional identity were dynamic: factors acted in harmony, were misaligned, or colliding to support or constrain an emerging professional identity for palliative care practice.
CONCLUSION: Findings highlight how individual factors interplay with interpersonal and structural conditions in the workplace in dynamic and emergent ways that may support or constrain the emergence of professional identity. Viewing learning as a process of becoming allows teachers, curriculum developers and administrators to appreciate the complexity and importance of the interplay between the individual and the workplace affordances to create environments that nurture professional identity for palliative care practice.
Coronavirus disease 2019 has created unprecedented challenges for amyotrophic lateral sclerosis (ALS) clinical care and research in the United States. Traditional evaluations for making an ALS diagnosis, measuring progression, and planning interventions rely on in-person visits that may now be unsafe or impossible. Evidence- and experience-based treatment options, such as multidisciplinary team care, feeding tubes, wheelchairs, home health, and hospice, have become more difficult to obtain and in some places are unavailable. In addition, the pandemic has impacted ALS clinical trials by impairing the ability to obtain measurements for trial eligibility, to monitor safety and efficacy outcomes, and to dispense study drug, as these also often rely on in-person visits. We review opportunities for overcoming some of these challenges through telemedicine and novel measurements. These can reoptimize ALS care and research in the current setting and during future events that may limit travel and face-to-face interactions.
Over 140,000 people in the United States have died as a result of infection with COVID-19. These patients have varying death experiences based on their location of death, the availability and utilization of various medical technologies, the amount of strain on the local health care system, the involvement of specialist palliative care (PC) teams, and access to essential medications to alleviate symptoms at the end of life. The objective of this report is to describe the death experiences of four patients cared for in an urban academic medical center who received very different degrees of medical interventions and to examine the interventions of our interdisciplinary PC team. We conclude that PC teams must adapt to this new landscape by creating best practices for ensuring adequate symptom control, modifying approaches for withdrawal of life-sustaining medical technologies, and gaining facility with communication through teleconferencing platforms to meet the challenge of alleviating suffering for people dying from COVID-19.
Despite a breadth of data on the management of cancer-associated thrombosis, all the studies informing clinical guidelines excluded patients receiving palliative care. Patients with advanced cancer have a higher rate of recurrent venous thromboembolism (VTE) and bleeding, making them one of the most challenging populations to treat. The dearth of population-specific research leaves clinicians with few options but to extrapolate data from clinical trials conducted on a healthier population. Recent observational studies have challenged the utility of doing this, suggesting the natural history of VTE in the advanced cancer patient may differ to our first beliefs and that a less aggressive approach to anticoagulation is warranted particularly near the end of life. This paper highlights what we know so far.
Palliative radiotherapy (PRT) makes up about half of all courses delivered in radiotherapy departments. It is effective in the management of common complications of cancer and is relatively inexpensive. About one third of cancer patients receive PRT within the last 2 years of life. One quarter of all patients who receive radiotherapy will undergo a second or subsequent course, mostly for palliative indications. There is considerable variation in practice, both within and between jurisdictions. This has been attributed to inconsistencies in guidelines, physician variation and differing financial incentives. Because of the widespread use of hypofractionation, variation in PRT fractionation has a lower effect on departmental capacity than variation in radical and adjuvant treatments. Excessive fractionation places an unnecessary burden on frail patients at the end of their lives and uses scarce healthcare resources. With appropriate case selection, the increased cost of fractionation or more conformal treatments can be justified where clinical benefit is expected.
Introduction: The public health strategy of the World Health Organization for palliative care is to increase access to palliative care services by integrating it with the healthcare systems. Therefore, the value of palliative care service provision by nurses who deliver the majority of care to chronical patients is an important issue. The objective of the study is assessing nurses' practice of palliative care.
Methods: A facility based cross-sectional study was carried out among 278 nurses working in governmental health facilities of Shire Endasilasie town, Tigray region, Ethiopia from February to June 2018. The questionnaire was revised based on the findings of the pre-test. The collected data was checked for its completeness, consistency, and accuracy before analysis. Data were entered and analyzed using SPSS version 22. The final result was reported using text and tables.
Results: A total of 278 nurses were included in the study and the response rate was 100%. The majority of the participants (71.9%) were females and the mean age of the respondents was 32.08 years (range from 20 to 60). Approximately two-thirds (74.8%) of the respondents had poor knowledge of palliative care practice. Half of the study participants reported emotional support gained as primary psychological support. Commonly used drugs for severe pain were paracetamol or ibuprofen 202 (72.2%) and 47.8% nurses focus on quality patient pain assess.
Conclusion: The majority of the nurses had a poor practice of palliative care.
Background and Purpose: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS.
Methods: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients–Intervention–Comparator–Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score >6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised.
Results: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised.
Conclusions: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.
PURPOSE: The integration of palliative care into usual oncology care is a best practice, but implementation can be challenging.
METHODS: We convened a virtual learning collaborative (VLC) of oncology practices with a focus on integrating palliative care. The entire program was virtual, with teams meeting via online Webinar and conference call and accessing content via an online portal. Because of the need to pause and retool after the first 5 months, the VLC evolved into 2 phases, with feedback after the first phase informing the second. We primarily evaluated the reaction of participants and project team members after the completion of the VLC using 2 quantitative surveys (after each phase) and semistructured interviews with participants.
RESULTS: A total of 24 oncology practices entered the VLC. Evaluation after each of 2 phases was conducted. For the first evaluation, 67% of respondents agreed a quality improvement coach was helpful to complete the program; 61% agreed a palliative care expert was helpful. The most common reasons for withdrawal involved organizational and VLC factors. Organizational factors included: time constraints, personnel changes (turnover), loss of the champion, and lack of team engagement. Twenty-two active participants and 8 former participants completed the second survey. Of those, 79% agreed the experience with the VLC was valuable, and 74% agreed the virtual delivery mode was useful. We identified 3 themes to drive future improvements related to structure, engagement, and content.
CONCLUSION: VLCs are a potential mechanism to disseminate information and facilitate learning in oncology. Further study of program characteristics that promote acceptance of VLCs are needed.
Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited.
Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes.
Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3–9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170–630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included “Learn how to manage, not just lead,” “Negotiate everything before you sign anything,” and “Balance patient volume with scope of practice.”
Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.
The COVID-19 pandemic has changed the way doctors approach palliative and end-of-life care, which has undoubtedly affected the mental health of patients, families, and health care professionals. Given these circumstances, doctors working on the front line are vulnerable to moral injury and compassion fatigue. This is a reflection of 2 junior doctors experiencing firsthand demands of caring for patients during the outbreak.
OBJECTIVE: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs).
STUDY DESIGN: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
RESULTS: Dying infants in the cohort underwent DNR (55%), CPR (21%), and WLST (73%). Gestational age, cause of death, and race were significantly and differently associated with each practice: younger gestational age (<28 weeks) was associated with CPR (OR 1.7, 95% CI 1.5-2.1) but not with DNR or WLST, and central nervous system injury was associated with DNR (1.6, 1.3-1.9) and WLST (4.8, 3.7-6.2). Black race was associated with decreased odds of WLST (0.7, 0.6-0.8). Between centers, practices varied widely at different gestational ages, race, and causes of death.
CONCLUSIONS: From the available data on end-of-life care practices for regional NICU patients, variability appears to be either individualized or without consistency.