Although one can argue that they do not represent a radical departure from existing practices, protocols for reverse triage certainly step beyond what is ordinarily done in medicine and healthcare. Nevertheless, there seems to be some degree of moral concern regarding the ethical legitimacy of practicing reverse triage in the context of a pandemic. Such concern can be taken as a reflection of the moral antipathy some exhibit towards current practices of withdrawing treatment—that is, when withdrawal of treatment is arguably in the best interests of patients—and a rejection of the purported normative insignificance of withholding and withdrawing. Given that the relevance of the psychological attitudes of some healthcare professionals to the moral assessment of withdrawing and withholding treatment continues to be debated, it would seem that some thought should be given to the introduction and implementation of reverse triage decisions in response to a pandemic. This brief paper will consider if provision should be made for healthcare professionals to conscientiously refuse to participate in reverse triage.
Importance: Little is known about how US clinicians have responded to resource limitation during the coronavirus disease 2019 (COVID-19) pandemic.
Objective: To describe the perspectives and experiences of clinicians involved in institutional planning for resource limitation and/or patient care during the pandemic.
Design, Setting, and Participants: This qualitative study used inductive thematic analysis of semistructured interviews conducted in April and May 2020 with a national group of clinicians (eg, intensivists, nephrologists, nurses) involved in institutional planning and/or clinical care during the COVID-19 pandemic across the United States.
Main Outcomes and Measures: Emergent themes describing clinicians’ experience providing care in settings of resource limitation.
Results: The 61 participants (mean [SD] age, 46  years; 38 [63%] women) included in this study were practicing in 15 US states and were more heavily sampled from areas with the highest rates of COVID-19 infection at the time of interviews (ie, Seattle, New York City, New Orleans). Most participants were White individuals (39 [65%]), were attending physicians (45 [75%]), and were practicing in large academic centers (=300 beds, 51 [85%]; academic centers, 46 [77%]). Three overlapping and interrelated themes emerged from qualitative analysis, as follows: (1) planning for crisis capacity, (2) adapting to resource limitation, and (3) multiple unprecedented barriers to care delivery. Clinician leaders worked within their institutions to plan a systematic approach for fair allocation of limited resources in crisis settings so that frontline clinicians would not have to make rationing decisions at the bedside. However, even before a declaration of crisis capacity, clinicians encountered varied and sometimes unanticipated forms of resource limitation that could compromise care, require that they make difficult allocation decisions, and contribute to moral distress. Furthermore, unprecedented challenges to caring for patients during the pandemic, including the need to limit in-person interactions, the rapid pace of change, and the dearth of scientific evidence, added to the challenges of caring for patients and communicating with families.
Conclusions and Relevance: The findings of this qualitative study highlighted the complexity of providing high-quality care for patients during the COVID-19 pandemic. Expanding the scope of institutional planning to address resource limitation challenges that can arise long before declarations of crisis capacity may help to support frontline clinicians, promote equity, and optimize care as the pandemic evolves.
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high risk for burnout and compassion fatigue, which can leave healthcare institutions increasingly vulnerable to poor retention, absenteeism, and waning quality of care. The provision of exemplary palliative care requires a cohesive interdisciplinary team of seasoned professionals resilient to daily challenges. In September 2019, the American College of Gynecology, in a committee opinion, published standard of care guidelines for perinatal palliative care. This has created an impetus for exceptional caregiving and a greater demand for both physician and interdisciplinary healthcare provider education, training, and ongoing support that promotes truly beneficent care for pregnant patients confronted with life-limiting fetal conditions.
Methods: A scoping review of the research literature was conducted in order to distinguish the barriers and facilitators of professional resiliency in perinatal palliative care. PubMed, Medline, CINAHL, and EBSCO Psychology & Behavioral Sciences Collections were systematically reviewed. Because of the paucity of studies specific to perinatal palliative care, several interviews of nurses and physicians in that field were conducted and analyzed for content distinctly pertaining to personal practices or workplace factors that support or hinder professional resiliency.
Results: The research indicated that medical professionals often cite a lack of knowledge, inexperience using effective communication skills related to perinatal palliative care and bereavement, challenges with interdisciplinary collaboration, misconceptions about the role and function of palliative care in the perinatal or neonatal settings, moral distress, and workload challenges as encumbrances to professional satisfaction. Strategic implementation of facility-wide bereavement care training, effective communication modalities, and evidenced-based practical applications are critical components for a thriving perinatal palliative care team. Authentic formal and informal debriefing, peer mentoring, adequate caseloads, robust provider self-care practices, exceptional relational efficacy, and cultural and spiritual humility can foster personal growth and even vicarious resilience for perinatal palliative care professionals.
Conclusions: Support should be strategic and multifaceted. The onus to implement salient measures to cultivate resilience in the perinatal palliative caregiver should not be only upon the individuals themselves but also upon prevailing regulatory governing bodies and healthcare institutions.
De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate's life. This paper seeks to systematically summarize healthcare providers' perspectives related to end of life, in order to identify needs and inform future directions.
METHODS: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States.
RESULTS: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy).
CONCLUSION: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.
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 current COVID-19 pandemic has necessitated the redeployment of NHS staff to acute-facing specialties, meaning that care of dying people is being provided by those who may not have much experience in this area. This report details how a plan, do, study, act (PDSA) approach was taken to implementing improved, standardised multidisciplinary documentation of individualised care and review for people who are in the last hours or days of life, both before and during the COVID-19 pandemic. The documentation and training produced is subject to ongoing review via the specialist palliative care team's continuously updated hospital deaths dashboard, which evaluates the care of patients who have died in the trust. We hope that sharing the experiences and outcomes of this process will help other trusts to develop their own pathways and improve the care of dying people through this difficult time and beyond.
Background: There are substantial disparities in distribution of palliative care (PC) services within Latin America, with Bolivia historically lagging behind neighboring countries in PC metrics. Comprehensive data on PC in Bolivia were last collected in 2012 through the Latin American Association for Palliative Care (ALCP) Atlas of PC.
Objective: to update the 2012 data and describe the current state of PC in Bolivia to aid in their ongoing efforts to expand PC services. In addition, to develop an instrument for assessment of national PC capacity that can be adapted for use in other countries.
Design: A cross-sectional study was conducted using personal and online structured interviews of PC team directors from all 19 PC teams around the country.
Measurements: new survey was developed for this study based on the ALCP Atlas of PC and international PC guidelines.
Results: PC teams in Bolivia have slowly increased in number since 2008. There are currently 19 PC teams in Bolivia, highly concentrated in urban centers. Multidisciplinary teams typically include physicians, nurses, psychologists, and social workers. The majority of teams offer treatments for all 16 essential PC symptoms included in our study. Teams report significant barriers for their patients to obtain opioid pain medications.
Conclusions: Bolivian PC teams utilize multidisciplinary teams and have the capability to treat many of the essential PC symptoms with guideline-recommended treatments. However, it is unclear whether availability of services translates to accessibility for most patients, especially given their geographic distribution and cost of services.
Objective: To assess the physiological outcomes and interpersonal influences that should be considered when making the decision to provide artificial nutrition and hydration (AN&H) for patients in hospice/palliative programs.
Methods: A systematic review was conducted using items from the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols 2015 checklist. Distinct search strategies were employed to find primary research articles that addressed: General health outcomes of artificial nutrition and hydration interventions and nutrition therapy interventions (n = 16), nutrition-related symptoms in end-of-life care (n = 8), and the attitudes of patients and providers toward artificial nutrition and hydration (n = 21).
Results: The effect of AN&H on health outcomes, quality-of-life measures and nutrition-related symptoms is limited and may vary by patient setting and diagnosis. In the absence of consistent evidence for specific health outcomes, decisions regarding AN&H should be made in context of the desires and beliefs of a patient, their family, and their medical providers. These beliefs may not be consistent with likely outcomes or may be inconsistent between individuals involved in the decision-making process, and individuals of different cultures or geographic regions may approach AN&H decisions from different perspectives. To help navigate the intersection of nutrition-related health outcomes and patient/provider beliefs, palliative care teams may employ a variety of strategies for approaching the decision-making process, and may benefit from specific involvement of a Registered Dietitian to help contribute to or lead these discussions.
OBJECTIVES: To report on direct experiences from advanced head and neck cancer patients, family carers and healthcare professionals, and the barriers to integrating specialist palliative care.
METHODS: Using a naturalistic, interpretative approach, within Northwest England, a purposive sample of adult head and neck cancer patients was selected. Their family carers were invited to participate. Healthcare professionals (representing head and neck surgery and specialist nursing; oncology; specialist palliative care; general practice and community nursing) were recruited. All participants underwent face-to-face or telephone interviews. A thematic approach, using a modified version of Colazzi's framework, was used to analyze the data.
RESULTS: Seventeen interviews were conducted (9 patients, 4 joint with family carers and 8 healthcare professionals). Two main barriers were identified by healthcare professionals: "lack of consensus about timing of Specialist Palliative Care engagement" and "high stake decisions with uncertainty about treatment outcome." The main barrier identified by patients and family carers was "lack of preparedness when transitioning from curable to incurable disease." There were 2 overlapping themes from both groups: "uncertainty about meeting psychological needs" and "misconceptions of palliative care."
CONCLUSIONS: Head and neck cancer has a less predictable disease trajectory, where complex decisions are made and treatment outcomes are less certain. Specific focus is needed to define the optimal way to initiate Specialist Palliative Care referrals which may differ from those used for the wider cancer population. Clearer ways to effectively communicate goals of care are required potentially involving collaboration between Specialist Palliative Care and the wider head and neck cancer team.
Background: Medical staff may have difficulties in using conventional medicine to manage symptoms among terminally ill patients, including adverse effects of the treatment. Traditional Chinese medicine (TCM) is regarded as a complementary or alternative medicine, and has been increasingly used in the field of palliative medicine in recent years. This study aimed to investigate the experiences of and attitudes toward using TCM among palliative care professionals, and to provide preliminary information about its use in palliative care.
Methods: This was a cross-sectional survey study conducted in eight inpatient hospice wards in Taiwan between December 2014 and February 2016. The questionnaire was self-administered, and was analyzed with descriptive statistics including Pearson’s Chi-square test and Fisher’s exact test.
Results: A total of 251 palliative care professionals responded to the questionnaire, of whom 89.7% and 88.9% believed that the use of TCM could improve the physical symptoms and quality of life in terminally ill patients, respectively. Overall, 59.8%, of respondents suggested that TCM had rare side effects, and 58.2% were worried that TCM could affect the liver and kidney function of patients. In total, 89.7% and 88.0% of professionals agreed there were no suitable clinical practice guidelines and educational programs, respectively, for TCM use in palliative care.
Conclusions: Most of the respondents agreed there was insufficient knowledge, skills-training, and continuing education on the use of TCM in terminally ill patients in Taiwan. These results show that to address patient safety considerations, guidelines about use of TCM in palliative care should be established.
Palliative care providers find meaning in their work, even though stress, burnout, and compassion fatigue can be a concern. In this study, we aimed to explore the experiences of well-being of palliative care providers in Malaysia. Data collected using semistructured interviews were thematically analyzed. Eighteen palliative care providers participated: 9 doctors and 9 nurses. Five subthemes were generated: (1) values and strengths, (2) coping and work-life balance, (3) social support and spirituality, (4) passion and satisfaction, and (5) learning, growth, and transformation. These subthemes were further categorized into 2 themes: resilience and reward. The results may inform the development of interventions in the promotion and sustenance of well-being of palliative care providers.
Background: How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists.
Methods: Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework.
Results: Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control.
Conclusions: If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.
OBJECTIVE: The objectives of this study were to identify barriers to end-of-life discussion with advanced cancer patients and their families as perceived by oncologists, certified/specialized nurses in cancer nursing (hereafter, collectively referred to as 'nurses') and medical social workers, as well as to clarify their opinions about effective strategies to facilitate end-of-life discussion.
METHODS: A questionnaire survey was distributed to 4354 medical professionals working at 402 designated regional cancer hospitals in Japan. Responses were obtained from 494 oncologists (valid response rate 30.7%), 993 nurses (46.7%) and 387 medical social workers (48.1%).
RESULTS: Among the barriers to end-of-life discussion with advanced cancer patients, factors related to patients and families, such as 'Family members' difficulty accepting loved one's poor prognosis', were recognized as the most important issues, which was the common view shared across the three types of medical professionals who participated in this study. Nurses and medical social workers were significantly more likely than oncologists to recognize as important issues 'Health care team disagreement about goals of care' and 'Lack of training to have conversations for end-of-life discussion'. To facilitate end-of-life discussion, 'providing mental and emotional support for the patients and their families after end-of-life discussion' was needed most as perceived by the respondents regardless of their profession.
CONCLUSIONS: Barriers impeding end-of-life discussion were factors related to patients and their families, and oncologists' close cooperation with nurses and medical social workers is important in providing emotional support for patients and families. To facilitate end-of-life discussion, it is important to share information on patients' prognosis and goals for treatment among oncologists and other medical professionals, as well as strengthen communication skill of these medical professions.
BACKGROUND: Nearly 70% of nursing home residents are eligible for palliative care, yet few receive formal palliative care outside of hospice. Little is known about nursing home staff attitudes, knowledge, skills, and behaviors related to palliative care.
METHODS: We administered a modified survey measuring attitudes toward death to 146 nursing home staff members, including both clinical and nonclinical staff, from 14 nursing homes.
RESULTS: Nursing home staff generally reported feeling comfortable caring for the dying, but half believed the end of life is a time of great suffering. Pain control (63%), loneliness (52%), and depression (48%) were the most important issues identified with regard to these patients, and there was ambivalence about the use of strong pain medications and the utility of feeding tubes at the end of life. Top priorities identified for improving palliative care included greater family involvement (43%), education and training in pain control (50%) and in management of other symptoms (37%), and use of a palliative care team (35%) at their facility.
CONCLUSIONS: Findings show there is a need for more palliative care training and education, which should be built on current staff knowledge, skills, and attitudes toward palliative care.
Les équipes ressources régionales en soins palliatifs pédiatriques interviennent à la demande des équipes soignantes qui gravitent autour de l’enfant et de sa famille. Au sein de ces équipes pluriprofessionnelles, la puéricultrice participe à l’élaboration et à la coordination du projet de vie de l’enfant en soins palliatifs en permettant le lien domicile-ville-hôpital. Grâce à son expertise, elle veille à garder l’enfant au centre des préoccupations soignantes en tenant compte de la place des parents.
Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein.
MATERIAL AND METHODS: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire.
RESULTS: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001.
CONCLUSION: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made.
Depuis l'Oregon Death with Dignity Act adopté en 1997, la dépénalisation de l'euthanasie aux Pays-Bas en 2001, puis en Belgique l'année suivante, de plus en plus de personnes demandent l'euthanasie ou en considèrent la possibilité.
BACKGROUND: Futile care in the neuroscience intensive care unit (NSICU) can create moral distress for clinicians who may differ in their interpretation of the value of such care. We sought to compare the perception of provision of futile care in the NSICU among physicians, advanced practice providers, and intensive care unit registered nurses (ICURNs).
METHODS: This is a cross-sectional study of 77 patients. A standardized questionnaire was used to ask clinicians whether care being provided to NSICU patients admitted for more than 48 hours was futile and whether they would want that treatment for their loved one. Demographics, diagnosis, and reason for treatment futility were collected. Futility was analyzed independently and in an aggregate manner (yes/probable combined and no/probable combined).
RESULTS: The sample median age was 61 (SD, 17.179) years, men comprised 53% of the sample, and 68% were white. Collectively, there were 77 futile responses (33%), 136 nonfutile (59%), and 18 probable futile (8%). Physicians and nurse practitioners deemed futility in 36% of patients; ICURNs, in 27% (P < .05). Age, race, or diagnosis did not impact futility perception. The treatment was acceptable for a loved one in 53% of cases for physicians, 43% for advanced practice providers, and 48% for ICURNs (P < .05). Interobserver agreement for futility was 0.469 (CK), and pairwise agreement was 71%. Interobserver agreement for treatment acceptable for a loved one was 0.568 (CK), and pairwise agreement was 78%.
CONCLUSIONS: Clinicians consider NSICU care futile in one-third of patients, but correlation among them is moderate; no specific variable is associated with such perception.
Background: Research has indicated that clinical staff in long-term care often lack self-confidence in palliative care delivery, particularly at the end of life.
Goals: (a) To examine the contribution of age, palliative care education, palliative care work-related experience and psychological empowerment to palliative care delivery confidence and (b) to explore the social reality shaping those factors for long-term care staff.
Design: Explanatory sequential design.
Setting: Twenty long-term care facilities in two district health boards in New Zealand.
Participants: Phase 1:139 clinical staff. Phase 2:46 clinical staff who provided care in the last month of a residents' life.
Methods: Phase 1: Cross-sectional survey. Phase 2: Individual semi-structured interviews.
Results: Phase 1: Previous experience (ß = .319) and psychological empowerment (ß = .311) contribute most to predicting an increase in palliative care delivery confidence. Phase 2: Four factors underlay palliative care delivery confidence, (a) mentorship by hospice nurses or colleagues (b) contextual factors (organisational culture, resources and experience), (c) maturity and (d) formal education.
Conclusion: Organisational leadership should use multiple strategies (e.g. power-sharing, increased opportunities for mentorship) to improve staff palliative care delivery confidence.
Implications for Practice: This study adds to the literature in understanding the predictors of palliative care delivery confidence specific to long-term care staff. The results indicate that educational interventions must be contextually appropriate to achieve sustainable improvements in palliative care confidence and ultimately in resident care at the end of life.