Experience-based design, co-design, and experience-based co-design can be used within healthcare to design services that improve the patient, carer and staff experience of the services. As palliative and end-of-life care centrally value person-centred care, we believe that service designers, commissioners and those tasked with making quality improvements will be interested in this growing field. This paper outlines these approaches-with a particular emphasis on experience-based co-design-and describes how they are and can be used within palliative and end-of-life care. Based on a rapid review and several case studies, this article highlights the key lessons learnt from previous projects using these approaches and discusses areas for improvement in current reporting of service design projects.
Palliative care (PC) teams are primed to support patients with advanced illness, including patients with mechanical circulatory support (MCS), and are increasingly being called upon to help care for these patients. Detailed guidelines for PC engagement are lacking despite key stakeholders' endorsements of collaboration. PC should encompass the decision-making period, the duration of therapy, and end-of-life care. PC teams can assist with symptom management, advance care planning, and communication across the continuum of MCS care. However, the current state of MCS and PC collaboration is variable and can be hindered by staffing challenges and clinician discomfort. To best care for patients who receive advanced cardiopulmonary life-sustaining therapies, meaningful engagement of PC during all phases of MCS is essential.
The care philosophy of palliative care has demonstrated a rapid growth in the past several years (Dumanovsky et al., 2016). Home care agencies and hospital systems have collaborated on reducing excessive costs and focusing on the effective management of patients with late-stage chronic desease .
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Context: Governments intend to meet resource constraints in professional palliative care by stimulating informal care, including volunteerism. However, little is known about current volunteer-professional collaboration. Such insights are relevant for future policy development regarding volunteer efficiency, quality of care and the capacity of volunteer care to support healthcare services and professionals.
Objectives: To explore what constitutes volunteer-professional collaboration around palliative care.
Methods: A qualitative study was conducted using semi-structured focus groups with volunteers, nurses, psychologists and family physicians and semi-structured interviews with people with serious illnesses and with family carers. Participants were recruited from hospital, home-care, day-care and live-in services in Flanders, Belgium. Interviews and focus groups were audio-recorded, transcribed verbatim and analysed employing a phenomenological approach. Two researchers coded independently in NVIVO 11 and reached a definitive coding scheme by comparing their resulting conceptual schemes.
Results: Seventy-nine people participated in the study. Volunteers collaborate mostly with nurses, less with psychologists but not with physicians. Volunteer-professional collaboration entails mutual information-sharing regarding patient conditions and coordination of care provision, while nurses and psychologists provide emotional and functional support for volunteers. Lack of access to nurses, of leadership and of patient-information sharing guidelines were the most prominent barriers to collaboration.
Conclusion: Volunteers are in the front line of palliative care provision and therefore collaborate intensely with nurses, particularly in dedicated palliative care services. However, collaboration with other professionals is limited. The presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration.
Interest in the potential for public health and palliative care to work together is now widely established. Based on a mapping review of existing literature, we describe for the first time the ways in which public health has entered palliative care policy and practice and how this has been specifically articulated. We then go on to pursue analytical and critical lines of enquiry that are largely absent from the existing literature. We do this in three ways: (i) by considering why the link between public health and palliative care has become so ubiquitous within palliative care policy; (ii) by establishing how this has been constructed; and (iii) by exploring public health as a 'reference discipline' from which its 'secondary deployment' can become embedded inside another disciplinary field. From this, we develop a range of critical perspectives on the relationship between public health and palliative care by scrutinising its claims of utility and effectiveness and questioning the strength of the interdisciplinary interaction between the two disciplines. We see their relationship in a 'cross disciplinary' context which is still largely symbolic and tactical in nature. We conclude by considering the significance of these insights for policy and practice, with two possible scenarios. If the use of public health is essentially figurative and its resources are not unique, the particular and exclusive use of the term becomes insignificant. Progressive and effective policy and practice is possible, independent of any explicit public health label. If however public health is considered to have intrinsic and definable worth, we suggest that this currently asymmetrical association needs to be significantly developed with much higher levels of theoretical, practical and critical engagement between the two disciplines. Such work would result in more reflective and robust policy and practice.
Music is one of the things in my life that has most reliably gotten me into and kept me out of trouble. Having played in bands for decades, I see parallels with the practice of medicine. As a hospitalist and a palliative care pediatrician, I would like to apply lessons from music to consider how general palliative care (provided by all clinicians) and specialty palliative care (provided by board-certified physicians) can work together in harmony. Music (like medicine) thrives through collaboration, benefits from specialized knowledge, and begs to be shared.
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PURPOSE: The purpose of the study was to evaluate the impact on pain management by multidisciplinary palliative care team (mPCT) and the team pharmacist.
METHODS: Patients who were admitted to palliative care unit (PCU) for at least 7 days between April 2014 and December 2015 were included. The mPCT consisted of a physician, a pharmacist, nurses, and non-clinical support staff. The team was on charge of pain management of patients who were admitted to PCU. Pain intensity was assessed at 3 time points in each patient; 1 week before PCU admission (day -7), on the day of admission (day 0), and 1 week after admission (day 7) using 0 to 10 numerical rating scale (NRS). Analgesic use was evaluated with 6 categories based on National Comprehensive Cancer Network and Korean pain management guidelines. Pain intensity and analgesic use appropriateness were compared at day -7, day 0, and day 7 for the patients who were admitted to the PCU.
RESULTS: Pain intensity decreased significantly on day 7 of PCU admission compared to it on day 0 (NRS: 4.05 vs 2.66, P < .001). A significant negative correlation was found between pain intensity and the proper use of analgesics ( r = -0.407; P < .001, r = -0.309; P = .001, r = -0.241; P = .009, on day -7, day 0, day 7, respectively).
CONCLUSION: The mPCT contributed to the reduction of inappropriate use of analgesics and improved pain control. Pharmacist intervention appeared to have improved pain control in patients under palliative care. Each team member's role should be individualized and developed further.
BACKGROUND: The American College of Emergency Physicians has identified early palliative care referral for patients with advanced cancer as a key competent of the Choosing Wisely campaign.
OBJECTIVES: To study the feasibility of a new 3-way model of care between emergency department (ED), hospital palliative care department, and inpatient/home hospice.
METHODS: This was a prospective, descriptive study that included oncology patients who attended the hospital ED over a 3-year period from January 2015 to December 2017. The inclusion criteria were as follows: (1) presence of metastatic cancer with either; (2) any 1 of the following symptoms: pain, dyspnea, nausea and vomiting, delirium, or swelling; or (3) potential care difficulties (requiring home hospice care or inpatient hospice).
RESULTS: A total of 340 patients were referred from the ED. Mean age was 72 years, 59% were males and 41% females, and the majority (88%) were Chinese. The most common cancers were lung 89 (26%), colorectal 71 (21%), and hepatobiliary cancer 49 (14%). The most common symptoms on Edmonton Symptom Assessment Scale scoring were pain (34%), poor appetite (31%), and dyspnea (26%).
CONCLUSIONS: This tripartite model of palliative care, hospice, and ED collaboration allows earlier access to palliative care in the ED and direct admissions to the palliative care unit and comfort care rooms. The ED patients who did not need admission were also attended to in the palliative care "Hot Clinics" within a week with home hospice help. Patients who required inpatient hospice care were directly admitted there from the ED.
Medical assistance in dying (maid) is a new medical service in Canada. Access to maid for patients with advanced cancer can be daunting during periods of declining health near the end of life. In this report, we describe a collaborative approach between the centralized coordination service and a regional cancer centre as an effective strategy for enabling interdisciplinary care delivery and enhancing patient-centred care at the end of the patient's cancer journey.
Objectif de l’étude: La collaboration avec les établissements médicosociaux accueillant des enfants polyhandicapés est inscrite dans les missions des équipes ressources régionales de soins palliatifs pédiatriques. Cette étude visait à identifier la nature de la première demande d’intervention de l’équipe ressources régionale de soins palliatifs pédiatriques, les bénéficiaires, les actions réalisées et la place de l’infirmière/puéricultrice diplômée d’état dans cette collaboration.
Matériels et méthodes: Il s’agissait d’une étude exploratoire rétrospective sur 2 ans à partir de 97 dossiers d’enfants polyhandicapés suivis par neuf équipes ressources régionales de soins palliatifs pédiatriques et accueillis dans différents types d’établissements médicosociaux en France. Les publics concernés par les premières demandes des établissements médicosociaux étaient l’enfant, son entourage et les équipes.
Résultats: Soixante-neuf pour cent des demandes s’adressaient concurremment à deux, voire trois de ces publics. Les problématiques initiales étaient le soutien des professionnels (26 %), le soulagement des symptômes (21 %) et l’élaboration du parcours de soin (16 %). Cinquante-trois pour cent des interventions étaient effectuées en binôme. Les actions des équipes ressources régionales de soins palliatifs pédiatriques étaient : participation aux réunions pluridisciplinaires (18 %), aide à l’élaboration du projet de vie et de soins (16 %), lien avec l’institution (13 %).
Conclusion: Cette étude démontre l’existence et le développement d’un esprit collaboratif entre les établissements médicosociaux et les équipes ressources régionales de soins palliatifs pédiatriques. Ces dernières s’appuient sur leurs savoirs développés en interprofessionnalité. Elles apportent leur expertise dans la prise en charge de ces enfants vulnérables, de leur entourage et des professionnels grâce à l’acculturation dans un cadre complexe. La première demande ouvre sur des problématiques variées sous-jacentes donnant lieu à diverses actions centrées sur l’enfant. L’infirmière/puéricultrice diplômée d’état est impliquée dans cette collaboration en lien avec son rôle propre et les compétences développées pour cette fonction pivot.
Addressing palliative care needs of people with dementia appropriately, identifying the end-of-life stage, meeting the needs of family carers as well as supporting the preferences and wishes of the person with the diagnosis can all present challenges to generalist health and social care providers. In partnership with Dementia UK and Kirkwood Hospice in West Yorkshire embarked upon a two-year pilot to introduce the first end-of-life care Admiral Nurse to their Specialist Community Palliative Care Team to identify and support people with dementia who required palliative and end-of-life care. This paper describes and discusses this innovative partnership and outcomes from year one evaluation and sets out future plans.
This workshop details a Partnership involving a High school, a Hospital (Calvary Health Care Bethlehem), La Trobe University and Palliative Care Victoria which seeks to support Community Capacity and resilience in dealing with Life-Limiting illness, death, dying and Loss. This alliance has produced an educational resource which may be used, not only as a tool to normalize death, but also as a means of exploring 'keys to well-being' at any stage of life, through any loss or challenge. This workshop features a template which has been trialled, adapted and evaluated in High School, workshop and Hospital induction settings within Australia. Responses thus far have been "overwhelmingly positive". Translating evidence of positive outcomes into Education & Health Care Systems, is a challenge-this workshop offers a means of approaching both. The conclusion of the workshop provides a number of insights: (I) engaging communities in discussions about well-being and harnessing the insights of youth is a palatable means of discussing well-being at end-of-life; (II) what we know, as a community about supporting people with life-limiting illness is applicable across the span of life-not just at the end; (III) just as it takes a village to raise a child-it takes a village to ensure a quality end-of life experience. What began as a one-off hospital immersion for Secondary School students has grown to become a sustainable educational resource, applicable across a number of domains-with the capacity to become an evidence-based means of increasing community EOL capacity. This workshop details the evolution of a community partnership, which produced an evaluated, sustainable, educational resource encouraging conversations about death and loss whilst emphasizing the essentials of well-being. It is a potential "foot in the door" of the education system and an "ice-breaker" for new staff/students to Palliative care.
Todos Contigo (We are All With You) is a programme for social awareness, training, and implementation of care networks for citizens to support, accompany and care for those who face advanced chronic disease and end of life situations. From New Health Foundation this programme collaborates with the Public Health and Palliative Care International Charter of Compassionate Communities. It seeks to promote a new integrated palliative care model in the daily lives of individuals, to make families and health/social professionals the main promoters of compassionate communities and compassionate cities movement. This workshop aims to: (I) describe the methodology of the programme: required tools and steps for building and developing a compassionate city or community; (II) identify stakeholders and organizations to join the compassionate community as networking agents; (III) sharing experiences from the implementation of this project in various contexts while providing specific examples and lessons learned from the perspective of various roles; (IV) explain the process of becoming a part of the project and of getting the official recognition for being a compassionate city. This workshop aims to share a new methodology "Todos Contigo" (We are all with you) Programme for the development of compassionate communities and cities movement. We describe our experiences in Spain and Latin American countries. The method is based on creating community networks, carrying out social awareness and training programmes related to end of life care.
Introduction: Choisir de mourir chez soi est une décision complexe et mobilise de nombreux acteurs de soins. Dans la continuité du Plan triennal 2015â€“2018 qui consacre un axe dâ€™intervention au déploiement des soins palliatifs à domicile, lâ€™équipe mobile de soins palliatifs (EMSP) stéphanoise souhaite intensifier le soutien aux soignants et aux aidants en ville. Cet article a pour objectif de mettre en évidence lâ€™intérêt de développer une activité à domicile auprès des patients et des professionnels de santé de ville.
Méthodes: Étude préliminaire, qualitative, observationnelle de 3 EMSP de la région Auvergne-Rhône-Alpes, de leurs actions à domicile et dâ€™un choix de consultations marquantes.
Résultats: Sur lâ€™ensemble des interventions physiques, le domicile représente entre 14 % et 25 % de lâ€™activité des EMSP1&2. Lâ€™EMSP3 a réalisé 313 visites en 2016. Ces équipes sollicitées par les hôpitaux et les médecins traitants interviennent pour des problèmes éthiques, de douleur, ou autres symptômes dâ€™inconfort, pour un soutien psychologique du patient, des aidants, ou des soignants libéraux, pour un besoin social ou une évaluation globale et pluridisciplinaire.
Conclusion: Lâ€™EMSP joue un rôle interstitiel fondamental cimentant un bricolage dâ€™acteurs multiples, motivés, mais parfois aussi souffrants ou maladroits autour dâ€™un malade en fin de vie à domicile. Véritable soutien pour le médecin généraliste et maillon entre la ville et lâ€™hôpital, elle essaye de respecter lâ€™intimité des familles, les choix des patients et le professionnalisme des soignants. Ces consultations complexes demandent du temps, de la disponibilité, de lâ€™expérience, et exigent une approche transdisciplinaire.
BACKGROUND:: Nurse practitioners have been well-established in many parts of the world and valued as a senior role in healthcare systems. This paper offers an appraisal of a palliative care nurse practitioner model of care project and augments an understanding of being a nurse practitioner (NP) in the Australian context.
AIMS:: To enhance outcomes for people regardless of care setting; and to enhance professional relationships between hospital and community services. A secondary objective was to facilitate a seamless transition from one service to another.
METHODS:: The setting was a home-based palliative care service and a tertiary acute hospital, between which the role was employed. This paper describes the role from the NP's perspective, using the NP's log of work and personal reflections.
RESULTS:: Despite describing many challenges, an NP shared model of care has benefits not just for smoothing the client's journey through settings of care, but also for increased opportunities for clinicians to work together.
CONCLUSIONS:: There are opportunities for further research, including models of role implementation, the skills required by the clinician, and acceptance and respect of the NP role.
Introduction: Notre service d’hospitalisation à domicile (HAD) est spécialisé pour les enfants atteints de cancer et possède une activité palliative importante. Cette étude décrit les caractéristiques des patients suivis en fin de vie par l’HAD, afin de comprendre les facteurs pouvant influencer le lieu de décès.
Méthodes: Nous avons mené une étude observationnelle rétrospective monocentrique sur les patients pédiatriques d’onco-hématologie, traités au moins un jour en HAD lors des 3 derniers mois de vie, et décédés entre le 1er juillet 2013 et le 31 décembre 2015. L’analyse statistique était descriptive et analytique.
Résultats: Soixante-quatorze patients suivis en HAD sont décédés au cours de cette période, parmi lesquels 8 ont été exclus. Quarante-trois patients parmi ces 66 (65 %) sont décédés à domicile. Lors des 3 derniers mois de vie, les patients d’oncologie ont moins de jours d’hospitalisation conventionnelle que les patients d’hématologie. L’implication des médecins généralistes, des infirmières libérales et les informations délivrées aux familles étaient plus importantes dans le groupe des patients décédés à domicile. Aucune association significative n’a été retrouvée entre l’âge du patient, sa pathologie, l’éloignement du domicile par rapport à l’hôpital et le lieu de décès.
Conclusion: Notre service d’HAD a une activité majeure en soins palliatifs et un nombre important de patients décède à domicile. Une collaboration efficiente entre l’équipe d’onco-hématologie et le service d’HAD, ainsi qu’entre l’HAD et les soignants libéraux permet d’optimiser les soins palliatifs.
PURPOSE OF REVIEW: Despite the historical international development of palliative care over the last 50 years, provision of equity of care and access to appropriate medication remains a major problem in many countries across the world. Interest in the public health approach to end-of-life care has grown over the last 20 years. Models of palliative care, which are affordable and provide equity of care are changing through these new concepts. We describe an existing model of practice in a primary care setting in Rio Grande in Brazil, which could act as a template for redesign of palliative care services.
RECENT FINDINGS: Traditional models of palliative care have focussed on the physical, social, psychological and spiritual domains. Abel and Kellehear have proposed a new model, uniting specialist and generalist palliative care with compassionate communities and the civic component encapsulated in the compassionate city charter. This model is more comprehensive, emphasizing both harm reduction and health and well being promotion, and is currently being rolled out within the Family Health Strategy in Rio Grande in Brazil.
SUMMARY: An existing model of palliative care, which includes the public health approach in Rio Grande be used as a basis for more equitable palliative care in Brazil, to meet a large unmet need.
BACKGROUND: If global palliative care is to successfully address challenges of unequal access, continuity of care, and health services reductionism, new practice models to address these issues need to be identified, debated and tested. This paper offers one such practice model based on a public health approach to palliative care that has so far shown promising evidence of effectiveness.
METHODS: We describe how four essential elements within a public health model can work together to address quality and continuity of care as well as addressing the numerous barriers of access. These elements are: (I) specialist, and (II) generalist palliative care services working with (III) communities and neighbourhoods, working in their turn with their (IV) key civic institutions.
RESULTS: The positive and negative impact and advantages of each of these elements is described and discussed.
CONCLUSIONS: A solely clinical model of palliative care is inadequate to addressing the multiple co-morbidities and access issues characteristic of modern palliative care. A public health approach based on a close partnership between clinical services and communities/civic institutions is the optimal practice model.