INTRODUCTION: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
METHODS: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
RESULTS: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
DISCUSSION: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
BACKGROUND: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users.
METHODS: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8).
RESULTS: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results.
CONCLUSIONS: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families.
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy.
CONTEXT: The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S.
METHODS: UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership.
RESULTS: In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members.
CONCLUSION: Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.
BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.
METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.
RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.
CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
BACKGROUND: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life.
OBJECTIVE: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD.
METHODS: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.
RESULTS: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD.2) Healthcare professionals do not always know what PD really means. Most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided.
CONCLUSION: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.
The purpose of this article is to describe the lessons learned in the course of a 5-year research study on a palliative care intervention for persons on a Phase 1 clinical trial. Patients who are participating in Phase 1 trials and the families who care for them may be especially vulnerable and require special attention. The patients are generally experiencing the effects of advanced disease, and they also may soon experience unknown side effects, intense treatment regimens, and the emotional stress of an uncertain future as a result of clinical trial participation. Oncology nurses in all roles including clinical trials/research nurses, clinicians, educators, and advanced practice registered nurses play a critical role in addressing the quality-of-life concerns in this population. Palliative care can provide better symptom control and information on treatment options and facilitate a better understanding of patient/family goals. Attending to these factors can ultimately mean improved survival for the advanced cancer patient, and support for these patients can assist in advancing the field of oncology as these investigational therapies hold the promise for enhancing survival.
Specialist palliative care services (SPCS) have a vital role to play in the global coronavirus disease 2019 pandemic. Core expertise in complex symptom management, decision making in uncertainty, advocacy and education, and ensuring a compassionate response are essential, and SPCS are well positioned to take a proactive approach in crisis management planning. SPCS resource capacity is likely to be overwhelmed, and consideration needs to be given to empowering and supporting high-quality primary palliative care in all care locations. Our local SPCS have developed a Palliative Care Pandemic Pack to disseminate succinct and specific information, guidance, and resources designed to enable the rapid upskilling of nonspecialist clinicians needing to provide palliative care. It may be a useful tool for our SPCS colleagues to adapt as we face this global challenge collaboratively.
Background: The medical profession increasingly recognizes the growing need to educate nonpalliative physicians in palliative care.
Objective: This study aims to provide a scoping review of the primary palliative care (PPC) education currently available to graduate medical trainees in primary and specialty tracks.
Design: Studies of PPC interventions in U.S. residency or fellowship programs of all subspecialties published in English and listed on MEDLINE, CINAHL, and EMBASE through January 2020 were included. To meet admission criteria, studies had to describe the content, delivery methods, and evaluation instruments of a PPC educational intervention.
Results: Of 233 eligible full texts, 85 studies were included for assessment, of which 66 were novel PPC educational interventions and 19 were standard education. Total number of publications evaluating PPC education increased from 8 (2000-2004) to 36 (2015-2019), across 11 residency and 10 fellowship specialties. Residency specialties representing the majority of publications were emergency medicine, general surgery, internal medicine, and pediatric/medicine-pediatrics. PPC content domains most taught in residencies were communication and symptom management; the primary delivery method was didactics, and the outcome assessed was attitudes. Fellowship specialties representing the majority of publications were pediatric subspecialties, nephrology, and oncology. The PPC content domain most taught in fellowships was communication; the primary delivery method was didactics and the outcome evaluated was attitudes.
Conclusions: While PPC education has increased, it remains varied in content, delivery method, and intervention evaluations. Future studies should include more widespread evaluation of behavioral outcomes, longitudinal persistence of use, and clinical impact.
OBJECTIVES: The purpose of this study is to map the characteristics of the existing medical literature describing the medications, settings, participants and outcomes of medical assistance in dying (MAID) in order to identify knowledge gaps and areas for future research.
DESIGN: Scoping review.
SEARCH STRATEGY: We searched electronic databases (MEDLINE, EMBASE, PsychINFO, CINAHL and CENTRAL), clinical trial registries, conference abstracts and professional guidelines from jurisdictions where MAID is legal, up to February 2020. Eligible report types included technical summaries, institutional policies, practice surveys, practice guidelines and clinical studies that describe MAID provision in adults who have provided informed consent for MAID.
RESULTS: 163 articles published between 1989 and 2020 met eligibility criteria. 75 studies described details for MAID administered by intravenous medications and 50 studies provided data on oral medications. In intravenous protocols, MAID was most commonly administered using a barbiturate (34/163) or propofol (22/163) followed by a neuromuscular blocker. Oral protocols most often used barbiturates alone (37/163) or in conjunction with an opioid medication (7/163) and often recommended using a prokinetic agent prior to lethal drug ingestion. Complications included prolonged duration of the dying process, difficulty in obtaining intravenous access and difficulty in swallowing oral agents. Most commonly, the role of physicians was prescribing (83/163) and administering medications (75/163). Nurses' roles included administering medications (17/163) and supporting the patient (16/163) or family (13/163). The role of families involved providing support to the patient (17/163) and bringing medications from the pharmacy for self-administration (4/163).
CONCLUSIONS: We identified several trends in MAID provision including common medications and doses for oral and parenteral administration, roles of healthcare professionals and families, and complications that may cause patient, family and provider distress. Future research should aim to identify the medications, dosages, and administration techniques and procedures that produce the most predictable outcomes and mitigate distress for those involved.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources.
Objective: Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale.
Design: Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC).
Results: Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed.
Conclusions: Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.
Aging adults (65+) with disability are especially vulnerable to coronavirus disease 2019 (COVID-19), and on contracting, they are a cohort most likely to require palliative care. Therefore, it is very important that health services-particularly health services providing palliative care-are proximately available. Treating the Melbourne metropolitan area as a case study, a spatial analysis was conducted to clarify priority areas with a significantly high percentage and number of aging adults (65+) with disability and high barriers to accessing primary health services. Afterward, travel times from priority areas to palliative medicine and hospital services were calculated. The geographic dispersion of areas with people vulnerable to COVID-19 with poor access to palliative care and health services is clarified. Unique methods of health service delivery are required to ensure that vulnerable populations in underserviced metropolitan areas receive prompt and adequate care. The spatial methodology used can be implemented in different contexts to support evidence-based COVID-19 and pandemic palliative care service decisions.
Introduction: Palliative care is a multidisciplinary approach which is focused on both the patient and their family. Therefore the objectives of the study is to assess the knowledge and attitude towards palliative care and its associated factors among nurses in Tigray, Northern Ethiopia, 2018.
Methods: An institutional based cross-sectional quantitative study design was carried out using 355 nurses working in selected hospitals in Tigray region from February to March, 2018. Systematic random sampling was used to select six governmental hospitals. We used triangulation in the study method, making use of both Frommelt's Attitude Toward Care of the Dying (FATCOD) scale, and Palliative Care Quiz for Nursing (PCQN) knowledge. SPSS were applied for data entry and analysis. Statistical significance was declared at P<0.05. The goodness of fit the final logistic model was tested by using the Hosmer and Lemeshow test at a value of > 0.05.
Results: All the participants were able to respond. Out of the total study participants, 223 (62.8%) had good knowledge and 200 (56.3%) had a favorable attitude towards Palliative care. A medical ward had (AOR = 3.413, CI = 1.388-8.392, P = 0.019), trained Nurses [AOR = 3.488; CI = 1.735-7.015; P = 0.00) significant associated with nurses knowledge towards palliative care. Nurses working in the lemlem Karl (AOR=2.541; 95% CI; 0.013(1.106-5.835), nurses who had a 20-30 years ago had unfavorable attitude (AOR = 2.660; 95% CI; 0.002(1.386-5.106) were significant.
Conclusion: The nurses had poor knowledge. However, their attitude towards palliative care (PC) was favorable.
INTRODUCTION: End-of-life care is an essential task performed by most healthcare providers and often involves decision-making about how and where patients want to receive care. To provide decision support to healthcare professionals and patients in this difficult situation, we will systematically review a knowledge cluster of the end-of-life care preferences of older patients with multimorbidity that we previously identified using an evidence map.
METHODS AND ANALYSIS: We will systematically search for studies reporting end-of-life care preferences of older patients (mean age >=60) with multimorbidity (>=2 chronic conditions) in MEDLINE, CINAHL, PsycINFO, Social Sciences Citation Index, Social Sciences Citation Index Expanded, PSYNDEX and The Cochrane Library from inception to September 2019. We will include all primary studies that use quantitative, qualitative and mixed methodologies, irrespective of publication date and language.Two independent reviewers will assess eligibility, extract data and describe evidence in terms of study/population characteristics, preference assessment method and end-of-life care elements that matter to patients (eg, life-sustaining treatments). Risk of bias/applicability of results will be independently assessed by two reviewers using the Mixed-Methods Appraisal Tool. Using a convergent integrated approach on qualitative/quantitative studies, we will synthesise information narratively and, wherever possible, quantitatively.
ETHICS AND DISSEMINATION: Due to the nature of the proposed systematic review, ethics approval is not required. Results from our research will be disseminated at relevant (inter-)national conferences and via publication in peer-reviewed journals. Synthesising evidence on end-of-life care preferences of older patients with multimorbidity will improve shared decision-making and satisfaction in this final period of life.
Introduction: The public health strategy of the World Health Organization for palliative care is to increase access to palliative care services by integrating it with the healthcare systems. Therefore, the value of palliative care service provision by nurses who deliver the majority of care to chronical patients is an important issue. The objective of the study is assessing nurses' practice of palliative care.
Methods: A facility based cross-sectional study was carried out among 278 nurses working in governmental health facilities of Shire Endasilasie town, Tigray region, Ethiopia from February to June 2018. The questionnaire was revised based on the findings of the pre-test. The collected data was checked for its completeness, consistency, and accuracy before analysis. Data were entered and analyzed using SPSS version 22. The final result was reported using text and tables.
Results: A total of 278 nurses were included in the study and the response rate was 100%. The majority of the participants (71.9%) were females and the mean age of the respondents was 32.08 years (range from 20 to 60). Approximately two-thirds (74.8%) of the respondents had poor knowledge of palliative care practice. Half of the study participants reported emotional support gained as primary psychological support. Commonly used drugs for severe pain were paracetamol or ibuprofen 202 (72.2%) and 47.8% nurses focus on quality patient pain assess.
Conclusion: The majority of the nurses had a poor practice of palliative care.
PURPOSE: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement.
METHODS: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160).
RESULTS: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.
CONCLUSIONS: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
Very little is known about the characteristics of the Medicare beneficiaries receiving hospice at home, defined using the Medicare Healthcare Common Procedure Coding System codes, as a traditional home, an assisted living facility, or a nursing home. A secondary analysis of 2015 Medicare data using regression to describe the characteristics of decedents (n = 675 782) in hospice residing in a traditional home, an assisted living facility, and a nursing home was completed. Results suggest that the proportion of Medicare decedents in hospice with more than 180 lifetime days in hospice was highest among those who resided in an assisted living facility (25.03%) compared with those who resided in a nursing home (18.87%) or in a traditional home (13.04%). Regression findings suggest that, compared with decedents in hospice without dementia who resided in a traditional home, decedents in hospice with a primary diagnosis of dementia were more likely to reside in an assisted living facility (adjusted odds ratio, 2.29; P < .0001) when controlling for other factors. In summary, decedents in hospice who resided in a traditional home have different characteristics than decedents who resided in an assisted living facility or a nursing home. Interdisciplinary providers should consider these differences when managing hospice interventions.
Health care provider communication proficiency is critical in the initiation and revisitation of these discussions throughout the trajectory of chronic illness. The delivery of palliative care (PC) throughout the continuum of illness has traditionally been underutilized. Nurses have the ability to significantly improve PC utilization through the use of advance care planning strategies to confidently initiate conversations with patients and families at multiple points throughout the continuum of illness. Nurses are uniquely positioned to contribute to the improvement of care provided to terminally and chronically ill patients because of the relationship developed and the knowledge of patient-specific disease progression that unfolds during the time spent with patients. In this study, nurses improved communication efficacy by learning to utilize advance care planning–specific interview strategies inclusive of scripting and cued language when initiating PC conversations. The preintervention/postintervention confidence levels of nurses in initiating early PC conversations significantly increased to improve the delivery of PC to patients.