This study explored the experience of pharmacists, social workers, and nurses who participated in Medical Assistance in Dying (MAiD) in a tertiary care Canadian hospital. Consenting staff participated in qualitative semistructured interviews, which were then analyzed for thematic content. This article reports on the broad theme of “support” from the perspective of the 3 professions, focusing on the diversity in perceptions of support, how MAiD was discussed within health care teams, feelings of gratuitous or excessive gestures of support, ambivalence over debriefs, and the importance of informal support. While pharmacists and social workers generally felt part of a community that supported MAiD, nurses more often expressed opinions as highly divergent. The key finding across all themes was the central importance of the culture on any unit with respect to MAiD and specifically the role of the unit manager in creating either a positive open space for communication or a more silent or closed space. Nursing noted that in the latter setting many gestures of support were experienced as insincere and counterproductive, as were debriefs. We outline several recommendations for managers based on the study results with the intent of tailoring support for all professionals involved in MAiD.
Twenty percent of Americans die in an intensive care unit (ICU), often incapacitated or requiring assisted decision making. Surrogates are often required to make urgent, complex, high-stakes decisions. Communication among patients, families, and clinicians is often delayed and inefficient with frequent missed opportunities to support the emotional and psychological needs of surrogates, particularly at the end of life. The Critical Care Nurse Communicator program is a nurse-led, primary palliative care intervention designed to improve the quality and consistency of communication in the ICU and address the informational, psychological, and emotional needs of surrogate decision-makers through the shared decision-making process.
BACKGROUND: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.
METHODS: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties.
RESULTS: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.
CONCLUSIONS: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.
BACKGROUND: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking.
METHODS: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017.
RESULTS: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful.
CONCLUSIONS: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
BACKGROUND: Many domiciliary care workers have reported low confidence and isolation when delivering end of life care in patients' homes. Project Extension for Community Healthcare Outcomes (ECHO) is an initiative that has demonstrated success in increasing confidence and knowledge of end of life care in UK nursing home and community hospice workers, but it has not been evaluated with domiciliary care workers.
AIM: To test the acceptability of Project ECHO to domiciliary care workers as a means of increasing their knowledge of, and confidence in, delivering palliative care, and its effectiveness in reducing their isolation by developing a community of practice.
METHOD: A service evaluation, involving one domiciliary care agency delivering care in the community, was conducted from May 2018 to April 2019. The participants were 25 home care workers who were employed by the agency. Participants were invited to attend an event at which gaps in their knowledge were identified, and a curriculum of learning on the Project ECHO programme was developed. The learning involved 12 educational sessions over 12 months, with each session teaching a different component of palliative care. Questionnaires were completed by the participants before and after the educational sessions to assess their effect. In addition, a focus group was conducted with four of the participants.
RESULTS: Comparison of the questionnaires completed before and after participating in the education sessions revealed an increase in self-reported knowledge across all 12 topics of the curriculum and an increase in confidence in seven of the 12 topics. However, attendance across the 12 sessions was variable, with no more than nine being attended by any one participant.
CONCLUSION: Palliative care education for domiciliary care staff using ECHO methodology was well received, relevant and accessible, and may have the potential to improve self-assessed knowledge and confidence. However, finding an ideal time for as many staff to attend as possible may be challenging.
Mortality from coronavirus disease 2019 (COVID-19) increases with age, and those over 80 are particularly vulnerable (Verity et al.,2020). Most national data on COVID-19 will underestimate mortality in older people. Triage and resource allocation protocols (Truog et al.,2020), and our understanding that it is often in the best interests of the frail older person to remain in their usual place of residence, may result in many deaths occurring outside of hospitals,particularly in care homes where these data may not be routinely collected.
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Patients with dementia may be discharged from hospice if their condition stabilizes. The loss of professional support and an already complex grief process needs careful attention. A live discharge presents a unique experience for each hospice patient, caregiver, and hospice team, which varies from traditional bereavement theories used to describe the grieving process. This article explores live discharge from hospice for caregivers of adults with dementia through a theoretical lens of Symbolic Interactionism (SI) and Attachment Theory (AT). The theories of SI and AT support and assist in understanding the experience of caregivers who lose hospice support due to ineligibility. In addition, caregivers watch the gradual deterioration and psychological loss of someone with dementia while they remain alive described as an ambiguous loss. Ambiguous loss as a subset of traditional bereavement theories provides a framework for this exploration and provides a relevant illustration of the complex needs. This article will conclude with implications for social work practice. It is important for hospice clinicians to be aware of current termination practices necessary to manage appropriate attachments, support the symbolic meaning of the hospice experience, validate the ambiguous losses, and maintain a sense of hope through a live discharge from hospice.
Mariana remarque que son grand-père a beaucoup changé, sa mémoire lui joue des tours et ressemble à un tourbillon. La petite fille, malgré son jeune âge, trouve les mots capables d'apaiser l'angoisse et le désarroi de son grand-père.
Une histoire pour aborder le thème d'Alzheimer.
Lorsqu'Ana rend visite à son Papi, les conversations sont difficiles car il a du mal à se souvenir de sa petite-fille. Aussi, ils évoquent ensemble des plaisirs simples : le miel sur le pain chaud... et la fabrication de chapeaux en papier à partir des vieux journaux de Papi.
La maladie d'Alzheimer n'est pas un thème facile à aborder. Les couleurs vives du livre sont comme les souvenirs du Papi, estompées, tirant vers le gris. Cet album permet d'évoquer le thème avec l'enfant tant par son graphisme que par son texte.
Vieux Jules est un très très vieux monsieur qui a perdu la mémoire des noms (même le sien), des choses, des personnes. Pour l'aider, ses proches trouvent un stratagème pour faire revenir à la surface tout ce qui a disparu.
C'est un très joli album par le graphisme et par le texte parfois en vers. Il est facilement compréhensible et accessible aux jeunes enfants.
BACKGROUND: Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences.
METHODS: The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points.
DISCUSSION: This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov: NCT03676283.
OBJECTIVE: To evaluate 'Gold Line', a 24/7, nurse-led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven.
METHOD: Data on the time and nature of all calls between 1 April 2014 and 30 March 2015 were obtained from the patient Electronic Records. Interviews with 13 participants captured patients and carers perspectives.
RESULTS: To date, 3291 patients have been referred to the Gold Line. During the study period, 42% of registered patients had a non-cancer diagnosis and 45.2% of service users were not known to Specialist Palliative Care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were made involving 1813 individuals. 39% of the 5106 contacts were resolved by the Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance from the Gold Line and the importance of practical advice was emphasised. Current data (year to October 2015) show that 98.5% of calls (4500/4568) resulted in patients remaining in their place of residence.
CONCLUSIONS: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and for their carers. The line enabled them to feel supported and remain in their place of residence, hence reducing the pressure for avoidable hospital admissions and use of other services. Providing this service may encourage healthcare professionals to identify more patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services.
BACKGROUND: A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.
AIM: This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.
DESIGN: A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.
SETTING/PARTICIPANTS: Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.
RESULTS: 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.
CONCLUSIONS: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.
TRIAL REGISTRATION NUMBER: ACTRN12615000120572, pre-results.
OBJECTIVE: The terminal phase of cancer represents a major crisis for the family system. Regardless of the caregiving role they undertake, family members are forced to address multiple impacts when facing the approaching death of their terminally ill loved one. International guidelines recognize the importance of integrating the family into a care plan. However, more needs to be known about how to deliver optimal family support. The purpose of this study is to review the current state of the art in family/caregiver-focused interventions of people with terminal cancer in palliative care.
METHOD: For this purpose, an overview of the literature's systematic reviews on the topic was conducted to select Randomized Controlled Trials (RCTs) on family/caregiver-focused interventions.
RESULTS: Nine interventions were found in the systematic reviews of literature and meta-analysis. These family/caregiver-focused interventions were then thoroughly and critically analyzed. Despite the heterogeneity with regard to their characteristics, the interventions commonly focused on caregiving matters, were brief in duration, and delivered by non-mental health experts. The efficacy of such interventions was seen as modest.
SIGNIFICANCE OF RESULTS: Family/caregiver-focused interventions in palliative care remain a matter of concern and more research is needed to identify adequate and effective ways of helping families that face the crisis of terminal illness in the system.
BACKGROUND AND OBJECTIVE: A priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers.
METHOD: We analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (=2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level.
RESULTS: Our analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3-63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level.
CONCLUSIONS: Poor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.
BACKGROUND: Many ambulance personnel can withhold or terminate resuscitation on-scene, but these decisions are emotionally, ethically and cognitively challenging. Although there is a wealth of research examining training and performance of life-saving resuscitation efforts, there is little published research examining how ambulance personnel are prepared and supported for situations where resuscitation is unsuccessful, unwanted or unwarranted.
AIM: To identify and describe existing preparation and support mechanisms for ambulance personnel enacting decisions to terminate resuscitation and manage patient death in the field.
METHOD: Focus groups were held with senior ambulance personnel working in clinical education and peer support roles.
RESULTS: Participants believed professional and personal exposure to death and dying and positive social modelling by mentors were essential preparation for ambulance personnel terminating resuscitation and managing patient death. Ambulance personnel responded to patient death idiosyncratically. Key supports included on-scene or phone back-up during the event and informal peer and managerial support after the event.
CONCLUSION: Clinical and life experience is highly-valued by ambulance personnel who provide training and support. However, novice ambulance personnel may benefit from greater awareness and rehearsal of skills associated with terminating resuscitation and managing the scene of a patient death. Organisations need to acknowledge idiosyncratic staff needs and offer a variety of support mechanisms both during and after the event.
AIM: To evaluate the feasibility of a structured nurse-led supportive intervention and its effects on family caregivers in end-of-life care at home.
BACKGROUND: Family caregivers are crucial in end-of-life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers' burden and improve preparedness. However, few nurse-led interventions are available to support family caregivers in end-of-life care at home.
DESIGN: We will perform a cluster randomised controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group.
METHODS: The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self-Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019.
IMPACT: Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end-of-life care.
BACKGROUND: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.
AIM: To understand nonreligious theistic parents' spirituality and to explore how parents discuss death with their terminally ill children in mainland China.
DESIGN: Qualitative study.
SETTING/PARTICIPANTS: This study was conducted in the hematology oncology center at Beijing Children's Hospital. Participants in this study included 16 bereaved parents.
RESULTS: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents' spiritual needs. Parents' spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism.
CONCLUSION: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient's personal belief in death should be assessed before discussing death with them.
Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.
Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.
Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.
Implications for Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.
Introduction : Soixante pour cent des personnes atteintes de la maladie d’Alzheimer vivent à domicile. Le maintien à domicile a un impact positif sur l’évolution des troubles du malade. L’aidant naturel en est un acteur indispensable, mais le retentissement sur sa santé est majeur. Le médecin généraliste a un rôle d’évaluation et d’anticipation sur le risque d’épuisement de l’aidant, défini par les pouvoirs publics. Un des outils proposés par la Haute autorité de santé (HAS) est la consultation dédiée au cours du suivi des aidants. L’objectif de l’étude était d’évaluer la place de cette consultation dédiée et son contenu en médecine générale.
Matériel et méthodes : Il s’agissait d’une étude épidémiologique descriptive auprès d’aidants de patients atteints de la maladie d’Alzheimer suivis par des médecins généralistes de la Somme, de mai à juillet 2018.
Résultats : 19 médecins généralistes ont participé, ce qui a permis d’interroger 49 aidants. 6,1 % des aidants naturels ont bénéficié d’une consultation dédiée. La mise en place des aides professionnelles est souvent réalisée. L’évaluation du fardeau de l’aidant et l’orientation de celui-ci vers les structures dédiées sont rarement réalisées.
Discussion : L’exploration des besoins et des difficultés en médecine générale dans l’anticipation du risque d’épuisement de l’aidant est nécessaire. Elle permettrait d’apporter des outils adaptés et d’améliorer la prévention du risque d’épuisement de l’aidant, qui met en péril le maintien à domicile du patient.
Conclusion : Le développement d’une approche préventive des aidants et de l’utilisation des aides dédiées à ceux-ci est primordial pour améliorer la qualité de vie du patient et de son entourage.