Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Objectives: To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.
Methods: We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.
Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.
Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.
Many critically ill patients with COVID-19 need specialty level palliative care to manage symptoms, conduct goals of care conversations, and facilitate medical decision making in ethically and emotionally charged situations. During the apex of the COVID-19 crisis in New York, the Adult Palliative Care Service at Columbia University Irving Medical Center (CUIMC)/NewYork-Presbyterian (NYP) received a 7-fold increase in consultation requests. This unprecedented increase in demand outpaced the palliative care team's ability to respond. We describe the rapid development and implementation of a scalable virtual consultation model staffed by out-of-state palliative care specialist volunteers.
Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
[Extrait Résumé éditeur]
Dans cette réflexion sur les soins palliatifs, nous pointons la parole médicale comme structurellement traumatique.
Fréquemment, elle bloque le sujet à l’Éternel présent et rend difficile la projection vers l’à-venir.
Nous avançons ici l’idée que l’accompagnement palliatif aide à se dégager de ce traumatisme. Nous distinguerons deux positions relationnelles différentes dans le rapport au patient, positions qui occasionnent des modalités distinctes de maniement de la parole...
Due to the current development around the COVID-19 pandemic, palliative ch has created the Task Force Focus Corona with representatives from the specialist group of doctors, nursing and pastoral care. The aim of the Task Force is to provide recommendations for health professionals on the treatment of palliative care patients in the various settings inpatient and outpatient. In doing so, we benefit greatly from our regional roots throughout Switzerland. Our guidelines are based on the experience and recommendations of our colleagues from the canton of Ticino. You can find all our recommendations on our website.
Background: Optimal pain management in the palliative care setting often requires multiple pharmacological interventions including novel and off-label therapies. Ketamine is an anesthetic agent with increasing evidence supporting its use for pain. Through N-methyl-d-aspartate antagonism and activity at opioid receptors, it is an adjuvant to traditional analgesics with the benefit of being opioid sparing. Ketamine has a wide safety profile with limited reports of overdose. Little is published on supratherpeutic dosing in the pain setting.
Objective: We report a case of a 41-year-old male with refractory nociceptive and neuropathic cancer-related pain. Conventional therapies were ineffective. Ketamine was initiated to reduce opioid burden and attenuate pain with good response. The patient received an iatrogenic overdose (10 times ordered dose) of the drug. Several self-limited physiologic and psychologic reactions were observed during subsequent monitoring.
Design: This is a study and analysis of a patient with refractory nociceptive and neuropathic pain syndrome treated with ketamine who sustained an iatrogenic overdose of ketamine.
Conclusions: Ketamine's use to treat pain is increasing along with its evidence of efficacy. Despite ketamine's wide safety profile, the medication is not without risk, especially in palliative care wherein patients are on multiple drugs with potentially severe interactions. Careful examination of the risks of overdose, especially of the various formulations of the drug, is needed.
Objectives: Palliative care workers have continuous exposure to the emotionally draining effects of pain, suffering, death, grief, and mourning. Burnout syndrome is common among these individuals who accompany patients on the way to death. This study evaluated burnout, stress, anxiety, and depression among care givers.
Methods: A total of 47 individuals working in palliative care units or internal disease and neurology clinics participated in the study. The participants were divided into 2 groups: palliative care workers (Group P) and workers in internal disease and neurology clinics (Group A). All of the participants completed the Maslach Burnout Inventory, the Beck anxiety and depression scales, and the Stress Appraisal Measure.
Results: A total of 47 healthcare workers agreed to complete the scales. Emotional burnout and desensitization scores were found to be elevated, and personal success scores were low in both groups. The Beck Anxiety Inventory revealed findings of moderate anxiety in both groups, while cognitive-sensorial, physiological, and pain complaints, as well as signs of stress, were more pronounced in Group A.
Conclusion: Burnout is a significant problem among healthcare workers and signs of stress and cognitive-sensorial, physiological, and pain complaints are particularly common among those working in palliative care units. Structural arrangements aimed at addressing the causes of burnout could positively affect the well-being of healthcare workers.
Background: Multisource feedback provides ratings of a trainee doctor’s performance from a range of assessors and enables 360 degree feedback on communication skills and team working behaviours. It is a tool used throughout palliative medicine training in the UK. There are limited data on the value of multisource feedback from a palliative medicine trainee perspective.
Aim: To study the views of palliative medicine trainees regarding multisource feedback as an educational tool to develop communication skills.
Design: A multimodal study encompassing a focus group and questionnaire mailed to all deanery palliative doctors.
Setting/participants: All palliative medicine trainees within a UK training deanery.
Results: Over half of responding trainees thought multisource feedback had little or no impact on their clinical practice. Improvements in delivery of multisource feedback to maximise learning were identified, including skilled feedback and facilitation by educational supervisors.
Conclusions: Despite multisource feedback currently having limited benefits, a number of recommendations are suggested to improve this.
Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group.
Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not.
Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief.
Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not.
Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death).
Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview.
Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.
Context: Doctors caring for patients with life-limiting illness are often exposed to emotional distress.
Objectives: We aimed to explore the experiences and perceptions of junior doctors working full time in a palliative care rotation. We examined the lessons junior doctors learnt in managing their emotions as they face patients' death on a daily basis.
Methods: We conducted a qualitative study with seven focus group discussions involving 21 junior doctors (medical officers and residents). Data were analyzed using qualitative thematic analysis to identify the themes related to the perceived challenges of these junior doctors and how they managed the struggles. Interviews were conducted with junior doctors who spent at least two months in a palliative care unit in a tertiary hospital or an inpatient hospice.
Results: junior doctors caring for dying patients in a palliative care rotation faced internal conflicts. Conflicting feelings arose because of differing expectations from their preconceived notions of their roles as doctors. Two main themes of internal struggles were professional distancing and emotional detachment as well as prognostic uncertainty and when to withhold and withdraw medical treatments. Coping strategies that helped included mentoring and role modeling provided by palliative care physicians, reframing their care experiences and reflection to find meaning in their work.
Conclusion: A palliative care rotation exposes junior doctors to emotionally overwhelming experiences. With proper guidance, this exposure is useful in teaching junior doctors important coping strategies, allowing learning to occur at a deeper level.
Introduction: Health professionals in oncologic and palliative care settings are often faced with the problem that patients stop eating and drinking. While the causes of food refusal are very different, the result is often malnutrition, which is linked to health comorbidities and a high mortality rate. However, the professionals lack the time and knowledge to clarify the cause for each patient. What associations do health professionals have when faced with food refusal?
Objective: To investigate the associations that health professionals in oncological and palliative settings have about denied eating behavior
Methods: A cross-sectional study, starting with an open question focusing professionals’ associations regarding food refusal. The results were inductively analyzed, whereby generic categories were developed. Subsequently, the categories were transformed into quantitative data to calculate the relationships between the categories.
Results: A total of 350 out of 2000 participants completed the survey, resulting in a response rate of 17.5%. Food refusal is primarily associated with physical and ethical aspects and with end-of-life. Half of the participants frequently find that patients refuse to eat. The attitudes show that the autonomy of the patient is the highest good and is to be respected. Even in the case of patients with limited decision-making capacity, the refusal to eat is acceptable.
Conclusion: Clarifying the cause of food refusal requires a great deal of knowledge and is strongly influenced by the associations of health professionals. While the associations have very negative connotations, information and training is needed to make professionals aware of this and to change their associations. With this knowledge and in an interprofessional cooperation, mis-labelling of patient settings can be avoided and fears can be reduced.
Context: Despite being associated with dependence and social stigma, methadone is a potential end-of-life option in complex cancer pain.
Objectives: To explore attitudes and opinions about methadone and its potential role and current use in complex end-of-life pain.
Methods: Semi-structured interviews (n = 30) with physicians in specialized palliative care, transcribed and analyzed with conventional qualitative content analysis.
Results: According to the physicians, patients and relatives expressed unexpectedly few negative attitudes, not affecting methadone’s use as an analgesic. Complex pain in bone-metastatic cancer of the prostate, breast and kidney, as well as pancreatic cancer and sarcomas were recurrent suggestions of appropriate indications.
Most of the informants stated that they applied a mechanism-based treatment and mainly prescribed low-dose methadone as an add-on to an existing opioid therapy to benefit from methadone´s proposed NMDA-receptor inhibiting properties, e.g. in cases with reduced opioid sensitivity. Despite its complex pharmacokinetics with a long half-life, most informants expressed defined strategies to avoid side-effects such as respiratory depression, especially when initiating treatment in the home-care setting.
While many palliative care physicians expressed an overly enthusiastic attitude, others stressed the risks of overconfidence, low precision in use, and overlooked treatment options. Besides the obvious physical pain-relieving effects, they stated that effective pain relief could result in a reduced workload and emotional empowerment, both for physicians and staff.
Conclusion: Methadone, especially in the form of low-dose add-on to other opioids is widely advocated in Swedish specialized palliative care as a practical and safe method with rapid onset in complex pain situations at the end of life.
Background: The number of medical undergraduate and postgraduate students completing palliative care clinical rotations in Canadian medical schools is currently unknown. The aim of this study was to assess the proportion of Canadian medical trainees completing clinical rotations in palliative care and to determine whether changes took place between 2008 and 2018.
Methods: In this descriptive study, all Canadian medical schools (n = 17) were invited to provide data at the undergraduate and postgraduate levels (2007/08–2015/16 and 2007/08–2017/18, respectively). Information collected included the number, type and length of palliative care clinical rotations offered and the total number of medical trainees or residents enrolled at each school.
Results: All 17 Canadian medical schools responded to the request for information. At the undergraduate level, palliative care clinical rotations were not offered in 2 schools, mandatory in 2 and optional in 13. Three schools that offered optional rotations were unable to provide complete data and were therefore excluded from further analyses. In 2015/16, only 29.7% of undergraduate medical students completed palliative care clinical rotations, yet this was a significant improvement compared to 2011/12 (13.6%, p = 0.02). At the postgraduate level, on average, 57.9% of family medicine trainees completed such rotations between 2007/08 and 2016/17. During the same period, palliative care clinical rotations were completed by trainees in specialty or subspecialty programs in anesthesiology (34.2%), geriatric medicine (64.4%), internal medicine (30.9%), neurology (28.2%) and psychiatry (64.5%).
Interpretation: Between 2008 and 2018, a large proportion of Canadian medical trainees graduated without the benefit of a clinical rotation in palliative care. Without dedicated clinical exposure to palliative care, many physicians will enter practice without vital palliative care competencies.
The Chicago Consensus Working Group provides multidisciplinary recommendations for palliative care specifically related to peritoneal surface malignancies. These guidelines are developed with input from leading experts including surgical oncologists, medical oncologists, gynecologic oncologists, pathologists, radiologists, palliative care physicians, and pharmacists. These guidelines recognize and address the emerging need for increased awareness in the appropriate management of peritoneal surface disease. They are not intended to replace the quest for higher levels of evidence.
As coronavirus disease 2019 cases increase throughout the country and health care systems grapple with the need to decrease provider exposure and minimize personal protective equipment use while maintaining high-quality patient care, our specialty is called on to consider new methods of delivering inpatient palliative care (PC). Telepalliative medicine has been used to great effect in outpatient and home-based PC but has had fewer applications in the inpatient setting. As we plan for decreased provider availability because of quarantine and redeployment and seek to reach increasingly isolated hospitalized patients in the face of coronavirus disease 2019, the need for telepalliative medicine in the inpatient setting is now clear. We describe our rapid and ongoing implementation of telepalliative medicine consultation for our inpatient PC teams and discuss lessons learned and recommendations for programs considering similar care models.
As the COVID-19 pandemic continues to spread across the country, I am proud to be a part of a community of physicians selflessly stepping up to the call to help. Palliative medicine has taken on a vital role in this crisis, in leading discussions on goals of care and taking over the care of those who are dying of this disease. As a palliative medicine fellow, I feel a palpable energy among my colleagues and mentors as we rise up to this challenge. We lead ethics committees on codes and triage committees for ventilator allocation if we were to face a shortage—a situation that would have been inconceivable just a few weeks ago. Now more than ever, there is a common sense of purpose among health care providers: we are all in this fight together. Yet behind this common purpose, many of us have a common fear. Not only do we fear for our own health, but we also fear for the health of our families that we come home to at night.
Les étudiants infirmiers rédigent généralement des mémoires de fin d’études (MFE) à partir de situations vécues lors des stages. C’est une occasion pour nombre d’entre eux de développer des concepts dans le domaine des soins palliatifs. La notion de soins palliatifs ne recouvre pas seulement les unités spécialisées. Elle permet de considérer de multiple aspect de la prise en charge des patients (enfants, adolescents, adultes, personnes âgées, en situation de handicap…) ou tout simplement de l’accompagnement jusqu’à la mort, avec la réalité médicale et sociale que cela comporte (douleurs, émotions, relations avec les aidants…). La recherche documentaire est paramédicale et complexe. Elle suppose une interaction ancrée dans les problématiques informationnelles. Afin de contribuer au raisonnement des apprenants, les documentalistes participent à l’élaboration d’une logique méthodologique pour apporter des éléments constructifs des soins palliatifs dans les MFE. Des concepts incontournables peuvent être utilisés pour créer du sens entre la situation d’appel, la "question de départ", le cadre de références théoriques et l’enquête de terrain.
Qui ne souhaite pas être ou n’est pas, réfléchi dans ses pratiques, pondéré, sage, lucide ? Un praticien réflexif est sans aucun doute réfléchi, mais il est plus que cela, il est en plus désireux et capable de se prendre pour objet de sa réflexion dans la visée d’améliorer ses pratiques. Cette situation engage ces acteurs à se documenter, s’informer, chercher, inventer, tester, lire, écouter… La connaissance se construit, se re-construit et trouve du sens au travers des partages expérientiels, des ressources documentaires, des mises en œuvre et des échanges.
Objectif : Les documentalistes du Centre national des soins palliatifs et de la fin de vie (CNSPFV) ont lancé, ces dernières années, un projet d’enrichissement de la base de données documentaire Palli@Doc. Cette démarche a pour but d’augmenter le nombre de documents référencés dans la base de données et de couvrir plus de disciplines sur les thématiques du CNSPFV, afin de faire de Palli@Doc une référence incontournable dans son domaine. Un objectif secondaire mais néanmoins essentiel était d’optimiser cette tâche documentaire en termes de ressources humaines et de temps.
Méthode : Cet article décrit la mise en place du projet étape par étape, de la sélection d’outils informatiques pour le catalogage des articles scientifiques à la veille semi-automatisée sur les soins palliatifs, la fin de vie, la mort et le deuil.
Résultats : Le dispositif, mis en œuvre depuis deux ans, a permis d’augmenter de façon significative (de plus de 300 %) le nombre de documents enregistrés dans Palli@Doc. VigiPallia, le portail documentaire du CNSPFV qui porte la base de données Palli@Doc, met "en vitrine" tout ce travail et propose dorénavant un nouveau produit documentaire "Arrêt sur…". Le processus qui conduit à ces enregistrements de documents a également été optimisé, passant de 50 % de trois ETP à 50 % d’un ETP.
Conclusion : Les documentalistes du CNSPFV ont amélioré le processus d’enregistrement des documents, tant en termes de quantité que de qualité. Les professionnels et futurs professionnels ont désormais un seul et unique point d’accès à l’information scientifique en soins palliatifs mis à jour régulièrement.
Les soins palliatifs sont un domaine de recherche et de questionnements cliniques touchant un grand nombre de disciplines tant médicales qu’académiques. Cet article vise à cartographier les revues dans lesquelles est publiée la littérature scientifique de langue française relative aux soins palliatifs. Des requêtes sur deux bases de données bibliographiques, PubMed et Palli@Doc, confirment l’hétérogénéité des sources de diffusion et montrent qu’un certain nombre d’articles est publié dans des revues non spécialisés en soins palliatifs. Ces résultats dessinent les défis à relever quant à la publication et la dissémination de la littérature scientifique, tant sur le plan national avec un accès facilité, que sur le plan international avec un choix réfléchi des revues dans lesquelles publier.