Advance directives (ADs) allow individuals to legally determine their preferences for end-of-life (EOL) medical treatment and designate a health-care proxy to act on their behalf prior to losing the cognitive ability to make informed decisions for themselves. An interprofessional group of researchers (law, nursing, medicine, and social work) conducted an exploratory study to identify the differences in quality-of-life (QOL) language found within the AD state statutes from 50 US states and the District of Columbia. Data were coded using constant comparative analysis. Identified concepts were grouped into 2 focus areas for EOL discussions: communication/awareness of surroundings and activities of daily living. Language regarding communication/awareness of surroundings was present in the half of the statutes. Activities of daily living were addressed in only 18% of the statutes. Only 3 states (Arkansas, Nevada, and Tennessee) specifically addressed QOL. Patients are best served when professionals, regardless of discipline, can share and transform knowledge for patients in times of crisis and loss in ways that are empathetic and precise. Interprofessional collaborative practice (IPCP) comprises multiple health workers from different professional backgrounds working together with patients, families, and communities to deliver the highest quality of care. One of the major competencies of IPCP encompasses values and ethics. Interprofessional collaborative practice is offered as the means to deliver person-centered value-based care when facilitating these crucial dialogs and making recommendations for change.
Palliative care is an evolving field with extensive studies demonstrating its benefits to patients, families, and the health care system. Many health systems have developed or are developing palliative care programs. The Canadian Society of Palliative Care Physicians (CSPCP) is often asked to recommend how many palliative care specialists are needed to implement and support an integrated palliative care program. This information would allow health service decision makers and educational institutions to plan resources accordingly to manage the needs of their communities. The CSPCP is well positioned to answer this question, as many of its members are Directors of palliative care programs and have been responsible for creating and overseeing the pioneering work of building these programs over the past few decades. In 2017, the CSPCP commissioned a working group to develop a staffing model for specialist palliative care teams based on the interdependence of three key professional roles, an extensive literature search, key stakeholder interviews, and expert opinions. This article is the Canadian Society of Palliative Care's recommended starting point that will be further evaluated as it is utilized across Canada.
For more information and to see sample calculations go to the Canadian Society of Palliative Care Physicians Staffing Model for Palliative Care Programs (https://www.cspcp.ca).
To augment learning about interprofessional palliative and end-of-life care, the University of New England College of Osteopathic Medicine immersed 2 second-year osteopathic medical students in an 18-bed acute care hospice home in Scarborough, Maine, for 48 hours. The students worked with an interprofessional staff and independently to provide patient care, family support, and postmortem care. For data collection, students wrote in journals before the immersion experience (prefieldwork), while living in the hospice home (fieldwork), and for 10 days following the immersion experience (postfieldwork). The students recorded their subjective and objective reporting of observations, experiences, feelings, and patient/family encounters. Data analyses included a review of the journals, identifying thematic categorizations, and coding through content analysis. Three themes identified in the students' journals reflected shared experiences: (1) shifting perspectives, (2) path to family acceptance, and (3) emotional journey. The students learned how to converse with patients and families about end-of-life care while ensuring attainment of patients' goals. They also learned about the importance of helping patients enjoy life's simple pleasures like taking them outside to enjoy the sunshine, and they learned to trust themselves when handling emotional and difficult situations. Each student gained confidence in her ability to help guide patients through this stage of life.
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (=10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with =10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education
BACKGROUND: Hospital palliative care is an essential part of the COVID-19 response, but relevant data are lacking. The recent literature underscores the need to implement protocols for symptom control and the training of non-specialists by palliative care teams.
AIM: The aim of the study was to describe a palliative care unit's consultation and assistance intervention at the request of an Infectious Diseases Unit during the COVID-19 pandemic, determining what changes needed to be made in delivering palliative care.
DESIGN: This is a single holistic case study design using data triangulation, for example, audio recordings of team meetings and field notes.
SETTING/PARTICIPANTS: This study was conducted in the Palliative Care Unit of the AUSL-IRCCS hospital of Reggio Emilia, which has no designated beds, consulting with the Infectious Diseases Unit of the same hospital.
RESULTS: A total of 9 physicians and 22 nurses of the Infectious Diseases Unit and two physicians of the Palliative Care Unit participated in the study.Our Palliative Care Unit developed a feasible 18-day multicomponent consultation intervention. Three macro themes were identified: (1) new answers to new needs, (2) symptom relief and decision-making process, and (3) educational and training issues.
CONCLUSION: From the perspective of palliative care, some changes in usual care needed to be made. These included breaking bad news, patients' use of communication devices, the limited time available for the delivery of care, managing death necessarily only inside the hospital, and relationships with families.
Background: People living with head and neck cancer frequently encounter challenges in their treatment with multimodality therapy and risk of side effects. Ensuring access to and use of interdisciplinary supportive and palliative care is often challenging given the complex needs and unfamiliar treatment experiences.
Objectives: Describe the CARE Clinic Plus ONN Gate Opener as an approach to enhance access to and utilization of interdisciplinary supportive and palliative care for people living with head and neck cancer.
Discussion: The Cancer Appetite and Rehabilitation (CARE) Clinic model offers interdisciplinary supportive and palliative care to patients at risk, including those living with head and neck cancer. The oncology nurse navigator (ONN) serves as gate opener, ensuring that those individuals receive appropriate assessment with personalized education and referrals for timely prehabilitation, rehabilitation, and palliation.
Conclusions: The ONN, as a gate opener for people living with head and neck cancer, offers an innovative approach to elevate the patient experience and improve clinical outcomes through interdisciplinary supportive and palliative care when working in collaboration with the CARE Clinic. Guidance for other centers to adapt our model to meet their patient and family needs concludes our discussion.
With perpetual research, management refinement and increasing survivorship, cancer care is steadily evolving into a chronic disease model. Rehabilitation Physicians are quite accustomed to managing chronic conditions, yet, in Australia, Cancer Rehabilitation remains under-explored. Palliative Care Physicians, along with Rehabilitationists, are true Generalists, who focus on the whole patient and their social context, in addition to the diseased organ system. This, together with Palliative Care's expertise in managing the panoply of troubling symptoms that beset patients with malignancy, makes them natural allies in the comprehensive management of this patient group from the moment of diagnosis. This paper will explore the under-recognized and under-utilized parallels and synergies between the two specialties as well as identifying potential challenges and areas for future growth.
In this paper we document some of the practical aspects of implementing medical assistance in dying (MAiD) since it became legal in Canada in 2016. The percentage of annual deaths in Canada due to MAiD varies widely, ranging from less than 0.5% in some areas to over 5% in others. By the end of 2019, approximately 13,000 people had an assisted death in Canada (1.6% of all deaths). The average age is 73 years and the majority have cancer (64%), followed by end-stage organ failure (17%), and neurological disease (11%). The safeguards in Canadian law include having two witnesses sign the patient request form, having two independent clinicians agree that the patient is eligible, and requiring a 10-day waiting period after the request is made. Although the criminal law is federal and applies throughout the nation, health services managed provincially, and there are many different models of care being used. Some provinces have standardized prescriptions and procedures for assisted dying with centralized care coordinators supporting both patients and providers. Other provinces expect individual providers to manage all aspects of assisted dying. The procedure and medications are provided free of charge to patients, but it took years before many providers were remunerated for their services. Access for patients has been a problem because there are too few providers of care (especially in rural areas), and many people have difficulty getting accurate information about the process. Many faith-based health care facilities continue to refuse to allow assisted dying within their facilities, so patients requesting MAiD need to be transferred to other locations in their last hours of life. Solutions to these problems have included the development of more training and support for providers and the creation of coordinating centres that provide information and support for patients throughout the process. Telemedicine is used for assessment of eligibility when required, especially during the COVID pandemic. There are similarities in problems of access to all end of life care options, including palliative care and residential hospices. The relationships between providers of assisted dying and specialists in palliative care vary, and examples exist throughout the spectrum from collegial to hostile. This is slowly improving, as individual clinicians gain more experience with patients choosing assisted dying. Public culture is changing as there are more conversations occurring about death and dying.
As the COVID-19 pandemic wears on, its psychological, emotional, and existential toll continues to grow and indeed may now rival the physical suffering caused by the illness. Patients, caregivers, and health-care workers are particularly at risk for trauma responses and would be well served by trauma-informed care practices to minimize both immediate and long-term psychological distress. Given the significant overlap between the core tenets of trauma-informed care and accepted guidelines for the provision of quality palliative care (PC), PC teams are particularly well poised to both incorporate such practices into routine care and to argue for their integration across health systems. We outline this intersection to highlight the uniquely powerful role PC teams can play to reduce the long-term psychological impact of the COVID-19 pandemic.
Durant la pandémie Coronavirus Disease 19, certains aspects habituels des retraits thérapeutiques ont dû être adaptés. L’accompagnement des patients et de leurs proches au décès ainsi que le soutien aux équipes de soins ont amené à résoudre de nouveaux défis. L’intégration des soins palliatifs dans les processus de retraits thérapeutiques aux soins intensifs a pu être mise en œuvre durant cette crise sanitaire. La formation continue aux questions en lien avec la fin de vie et l’établissement de plans de collaboration avec les soins palliatifs est essentielle aux soins intensifs.
Staff reported paranormal experiences in connection with the outpatient Medical Assistance in Dying (MAiD) room at the hospital. This case study reports on staff experiences and illustrates how the Ethics team’s role expanded to deal with this novel situation by facilitating an interdisciplinary response.
One of the greatest successes of radiotherapy has been its ability to palliate symptoms from advanced and metastatic cancers. Unfortunately, patients face barriers to accessing care and the demand for treatment is rising. Rapid access palliative radiotherapy programmes were created in response to these concerns, and over time they have proliferated and succeeded internationally. This narrative review provides an overview of programmes that have published their experiences, and discusses how they have improved access to care, increased evidence-based practice, met the needs of vulnerable populations, advanced the roles of multidisciplinary team members, collaborated across medical specialties, educated trainees and referring physicians, and developed new treatment platforms using advanced technologies.
OBJECTIVE: Palliative, end-of-life care (PEOLC) providers are poorly resourced in addressing the needs of patients with mental health challenges, and the dying experiences of this cohort-particularly those with a comorbid, chronic and persistent mental illness (CPMI)-are poorly documented. We sought to explore the experiences of PEOLC providers with regard to caring for patients with mental health challenges, and gather insights into ways of improving accessibility and quality of PEOLC for these patients.
METHOD: Twenty providers of PEOLC, from different disciplines, took part in semi structured interviews. The data were coded and analyzed using a reflexive, inductive-deductive process of thematic analysis.
RESULTS: The most prominent issues pertained to assessment of patients and differential diagnosis of CPMI, and preparedness of caregivers to deliver mental health interventions, given the isolation of palliative care from other agencies. Among the assets mentioned, informal relationships with frontline caregivers were seen as the main support structure, rather than the formal policies and procedures of the practice settings. Strategies to improve mental health care in PEOLC centered on holistic roles and interventions benefiting the entire palliative population, illustrating the participants saw little point in compartmentalizing mental illness, whether diagnosed or not.
SIGNIFICANCE OF RESULTS: Continuity of care and personal advocacy can significantly improve quality of life for end-of-life patients with mental health challenges, but bureaucracy and disciplinary siloing tend to isolate these patients and their caregivers. Improved interdisciplinary connectivity and innovative, hybridized roles encompassing palliation and psychiatry are 2 strategies to address this disconnect, as well as enhanced training in core mental health care competencies for PEOLC providers.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Background and study aims: Acute health service requires focused palliative care (PC). This study was performed to provide guidance for the establishment of a palliative care consultation service (PCCS).
Patients and methods: This study was conceived as a retrospective single-center study for observing, analyzing and evaluating the initial setup of a PCCS from 1 May 2015 to 31 May 2018. Patients from Muenster University Hospital with advanced life-limiting diseases, identified to require PC, were included.
Results: PCCS was requested from various departments, for between 20 and 80 patients per month, corresponding to a total of 2359 for the study period. Requests were highest in internal medicine (27.3%), gynecology (18.1%) and radiotherapy (17.6%). Time to referral was significantly shorter in departments with special PCCS ward rounds (6 ± 9 vs. 12 ± 22 days, p < 0.001). The most frequently reported symptoms were fatigue, pain and loss of appetite. Pain was frequently localized in the stomach (20.4%), back (17.1%), or in the head and neck area (14.9%). After the first PCCS consultation, 254 patients (90%) reported sufficient pain relief after 48 h. An introduction/modification of painkiller medication, which was recommended for 142 inpatients, was implemented in 57.0% of cases by the respective departments. Overall, the direct realization of PCCS recommendations reached only 50% on average.
Conclusions: Besides an analysis of the ability to address the symptoms of the referred patients by the PCCS, this study highlights the importance of the interaction between PCCS and other departments. It further elucidates the role and possibilities of this service both in regular ward rounds and individual staff contacts.
The purpose of this pilot was to identify the effects of a 4-credit interdisciplinary undergraduate course focused on communication strategies to enhance spiritual care at the end of life. The course provided students with opportunities to enhance their ability to communicate empathically with individuals facing the end of life. Evidence-based content focused on ways to live each day with hope and gratitude, strengthen relationships, create a legacy, and find meaning and purpose in life and death. Narayanasamy's (1999) Actioning Spirituality and Spiritual Care Education and Training in Nursing model guided project development. The study used a prospective, pretest/posttest design. Participants included undergraduate students (n = 34) from nursing, premedicine, athletic training, business, economics, and religious studies at a Midwest liberal arts college. Statistically significant differences were found in students' attitudes toward and knowledge of spirituality/spiritual care (P < .0001, Cohen's d = 0.59), spiritual care competence (P < .0001, Cohen's d = 0.79), and level of response empathy through role play (P < .0001, Cohen's d = 0.92). Many students referred to this course as “life changing” and “healing.” As our students go out into the community, they may intimately touch the lives and hearts of future patients, family, and friends who face the end of life with their compassionate words.
Nearly all reports of interprofessional education (IPE) in palliative care have excluded pharmacy students. This article describes an IPE event between pharmacy and nursing students and assesses its impact on IPE competencies. Second-year nursing students and third-year pharmacy students participated in an evening-long event, focused on a married couple who each require palliative care—one for end-of-life planning and one for chronic disease progression. The impact of the event was assessed using the Interprofessional Collaborative Competency Attainment Scale (ICCAS) and qualitative feedback. Two hundred nine (96.7%) completed the ICCAS, and 16 of the 20 statements of the ICCAS showed large positive effect sizes (Cohen d >= 0.8), with the remaining 4 showing moderate positive effect sizes (Cohen d >= 0.5). The greatest effect sizes were related to improved awareness of complementary skillsets and knowledge between the professions. Addressing team conflict and including the patient/family in decision-making showed the least improvement. While ongoing interactions are ideal for the development of skills related to conflict and team development, this article demonstrates that even a 1-time activity can have an impact on students' interprofessional care competence.
The purpose of this quality improvement project was to evaluate a statewide initiative promoting Advance Care Planning (ACP) to educate and support multidisciplinary ACP educators and provide tools to start ACP conversations in a predominantly rural state of the Upper Midwest. Individual objectives were to (1) motivate people of different professions and backgrounds to support the vision and (2) implement a system to educate and maintain a pipeline of ACP educators in appropriate methodologies to enable ACP in distant communities. The Advance Care Planning: Quality Conversations coalition was formed in 2015 to improve health care across the life span. The Reach-Effectiveness-Adoption-Implementation-Maintenance framework was applied to evaluate the project. Outcome variables were measured before, during, and after program implementation through service statistics and a questionnaire. Participation in the coalition's membership team between September 2015 and September 2019 ranged from 18 to 36 with a median of 27 and mode of 27. At least 20 different professions were represented. The coalition provided funds for educating 9 ACP instructors and 180 facilitators according to the Respecting Choices–First Steps ACP program. The coalition's mission has generated sustained interest for 4 years. Key elements and obstacles to implementing a statewide coalition were identified.
Hospice interdisciplinary teams (IDTs) are required to meet regularly to update care plans for terminally ill patients and their family caregivers. Although providers see value in these meetings, they also experience frustration over meeting inefficiencies and communication challenges. The current article presents ENVISION, a tool designed to improve communication in hospice IDT meetings by providing attendees with access to up-to-date patient and family data to inform clinical decision making. In the current qualitative descriptive study, researchers explored the perspectives of hospice providers (n = 21) and family caregivers (n = 10) regarding ENVISION's usefulness and ease of use. Numerous factors influenced participants' perceptions of the tool as useful, including its impact on task efficiency, effectiveness, and difficulty. Perceptions of ENVISION's ease of use focused on ease of learning, operating, and interpreting data the tool provided. Findings suggest ENVISION would benefit hospice nurses in care management and senior leadership positions. [Journal of Gerontological Nursing, 46(7), 9-14.].
AIM/OBJECTIVE: The purpose of the project was to provide information to inform the choice of educational resources available in British Columbia to support palliative care competency development for 4 disciplines: nurses, physicians, health care assistants, and social workers/counsellors. This article will describe the process of resource review. Results of the review are available at https://www.bc-cpc.ca/cpc/education-resource-review/ . The objectives were to (1) identify gaps common to all educational resources, (2) provide information on content addressing competencies as well as logistics such as time required, cost, delivery method, and training requirements for instructors, and (3) develop a reproducible process for assessment of educational resources which is unbiased, transparent, and competency based.
METHOD: Sixteen educational resources were assessed for the percentage of competencies that were addressed. Gaps common to all resources were identified.
RESULTS: The review process is described and can be replicated when assessing future versions of these and other palliative continuing education courses. This is a reproducible methodology for review of competency-based educational resources which could be applied for any practice-related subject.
CONCLUSION: This review process provided information which can inform a provincial interprofessional palliative education plan. The methodology may be used by others to assess and choose between competency-based education resources with a palliative population focus and other patient population foci.