End-of-life care pathways in acute and hospice care: an integrative review

ContextOver the past decade, there has been widespread adoption of end-of-life care pathways as a tool to better manage care of the dying in a variety of care settings. The adoption of various end-of-life care pathways has occurred despite lack of robust evidence for their use.ObjectivesThis integrative review identified published studies evaluating the impact of an end-of-life care pathway in the acute and hospice care setting from January 1996 to April 2010.MethodsA search of the electronic databases Scopus and Cumulative Index of Nursing and Allied Health Literature as well as Medline and the World Wide Web were undertaken. This search used Medical Subject Headings key words including “end-of-life care,” “dying,” “palliative care,” “pathways,” “acute care,” and “evaluation.” Articles were reviewed by two authors using a critical appraisal tool.ResultsThe search revealed 638 articles. Of these, 26 articles met the inclusion criteria for this integrative review. No randomized controlled trials were reported. The majority of these articles reported baseline and post implementation pathway chart audit data, whereas a smaller number were local, national, or international benchmarking studies. Most of the studies emerged from the United Kingdom, with a smaller number from the United States, The Netherlands, and Australia.ConclusionExisting data demonstrate the utility of the end-of-life pathway in improving care of the dying. The absence of randomized controlled trial data, however, precludes definitive recommendations and underscores the importance of ongoing research.     

Interdisciplinary cooperation of GPs in palliative care at home: a nationwide survey in The Netherlands

OBJECTIVE: To investigate the occurrence and predictors of interdisciplinary cooperation of GPs with other caregivers in palliative care at home. DESIGN: In a prospective study among 96 general practices, the GPs involved identified all dying patients during the study period of 12 months. The GPs received an additional post-mortem questionnaire for each patient who died during the study period, and registered the healthcare providers with whom they cooperated. Multivariable logistic regression analysis was used to identify the predictors of GP cooperation with other caregivers. SETTING: Second Dutch National Survey in General Practice. SUBJECTS: A total of 743 patients who received palliative care according to their GP. MAIN OUTCOME MEASURES: Interdisciplinary cooperation between GP and other healthcare providers. RESULTS: During the study period, 2194 patients died. GPs returned 1771 (73%) of the questionnaires. According to the GPs, 743 (46%) of their patients received palliative care. In 98% of these palliative care patients, the GP cooperated with at least one other caregiver, with a mean number of four. Cooperation with informal caregivers (83%) was most prevalent, followed by cooperation with other GPs (71%) and district nurses (63%). The best predictors of cooperation between GPs and other caregivers were the patient's age, the underlying disease, and the importance of psychosocial care. CONCLUSION: In palliative care patients, GP interdisciplinary cooperation with other caregivers is highly prevalent, especially with informal caregivers and other primary care collaborators. Cooperation is most prevalent in younger patients, patients with cancer as underlying disease, and if psychosocial care is important.     

‘We have no crystal ball’ - advance care planning at nursing homes from the perspective of nurses and physicians

Objective: To investigate clinicians’ perspectives on the factors that shape the process of advance care planning in a nursing home context.

Design: Interviews. Latent qualitative content analysis.

Setting: Nine nursing homes in Sweden.

Subjects: 14 physicians and 11 nurses working at nursing homes.

Main outcome measures: Participants’ views on advance care planning (ACP) at nursing homes.

Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patient’s readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patient’s preferences and staff’s and family member’s views; Decision & documentation of the ACP, e.g. clear documentation in patient’s medical records that are up-to-date and available for staff caring for the patient, and Implementation & re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence – defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process

Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context.

• Key Points

• Advance care planning can help patients to receive care in line with their preferences and can positively impact quality of end-of-life care.

• Our results describe a process consisting of four manifest categories and one latent theme constituting the process of advance care planning, that may be considered in education in advance care planning.

• The significance of nurses and physicians perceiving beneficence as well as fear of accusations of maleficence are important factors to contemplate.

• The study has implications for healthcare staff caring for patients near the end of their lives, in particular patients in nursing homes.

     

Experiences with advance care planning: nurses' perspective

jeong s.y.‐s., higgins i. & mcmillan m. (2011 ) Experiences with advance care planning: nurses’ perspective. International Journal of Older People Nursing  6 , 165–175 doi: 10.1111/j.1748‐3743.2009.00200.x Aims and objectives. The aim of this paper is to report the findings of a case study that explored the phenomenon of advanced care planning and advance care directives in residential care settings in Australia. In particular, this paper focuses on the experiences of Registered Nurses with advanced care planning and advance care directives. Background. Nurses need to know how to engage with residents and families when they invest time and effort on advanced care planning and documentation of advance care directives. Methods. A case‐study design involving participant observation, field note recording, semi structured interviews and document analysis was used. Data were collected over 7 months. Data analysis involved thematic content analysis. Findings. The factors that enhanced and inhibited the experiences of the Registered Nurses with advanced care planning were identified. The enhancing factors include; ‘it is their essence of who they are’, and ‘back‐up from family members and other nursing staff’. The inhibiting factors are ‘lack of time’, ‘a culture of do everything and don’t go there’, and ‘lack of family involvement’. Conclusion. The findings of the current study provided nurses with evidence of the positive nature of experiences of older people, family members, and nurses themselves with advanced care planning in an attempt to better implement and practise advanced care planning.     

Experiences with advance care planning: older people and family members' perspective

jeong s.y.‐s., higgins i. & mcmillan m. (2011) Experiences with advance care planning: older people and family members’ perspective. International Journal of Older People Nursing 6 , 176–186 doi: 10.1111/j.1748‐3743.2009.00201.x Aims and objectives. The aim of this study is to report the findings of a case study that explored the phenomenon of advance care planning and advanced care directives in residential care settings in Australia. In particular, this study focuses on the experiences of residents’ and family members’. Background. Understanding the phenomenon of advance care planning and advanced care directives is vital to end of life decision making. There are few studies that report the experiences of older people and family members in relation to advance care planning and advanced care directives. Methods. A case‐study research was conducted and data was collected over 7 months involving participant observation, field notes, semi‐structured interviews and document analysis. Findings. The participants’ early experiences with advance care planning were expressed in unpleasant, hostile and negative ways. However, those emotions and concerns were transformed to more stable, amenable and positive attitudes and feelings as issues were resolved. The factors that enhanced or inhibited the transition were described. Conclusion. Older people and families view the end of life with broader psychosocial and spiritual meanings shaped by a lifetime of experiences. Advance care planning led to a different level of appreciation of personal entity and transcendence. However, advance care planning demands concerted action and support by everyone involved.     

Palliative care Needs Rounds in rural residential aged care: A mixed-methods study exploring experiences and perceptions of staff and general practitioners

New approaches are needed to assist residential aged care (RAC) staff increase their skills and confidence in identifying when residents are nearing the dying phase and managing symptoms. One new evidence-based approach to improve palliative and end-of-life care in RAC is outreach Specialist Palliative Care Needs Rounds (monthly triage and risk stratification meetings – hereafter Needs Rounds); as yet untried in rural settings which may face unique enablers or challenges. Needs Rounds were introduced into two RAC facilities in the rural Snowy Monaro region of New South Wales, Australia. This study explored staff and general practitioners’(GPs’) experiences and perceptions of palliative and end-of-life care in rural RAC, and staff confidence and capability in providing such care, prior to, and after the introduction of Needs Rounds. A mixed-methods, pre- and post-intervention approach was taken, utilizing a Likert-scale written questionnaire and face-to-face semi-structured interviews. Between March and November 2018, 61 questionnaires were completed by 48 RAC staff (33 pre-, 28 post-intervention); eight staff and three GPs were interviewed. Despite system and site-specific barriers, staff self-reported that Needs Rounds increased their capability in providing end-of-life care (p?=?0.04; 95% CI 0.20–7.66), and improved staff: (1) awareness of end of life, reflective practice, and critical thinking; (2) end-of-life decision making and planning; and (3) pain management. Needs Rounds are acceptable and feasible in rural RAC. Palliative and end-of-life care for residents may be improved through education, collaboration, communication, and planning. Further studies should explore running Needs Rounds via telehealth and/or utilizing a multidisciplinary approach.     

Palliative care case management in primary care settings: A nationwide survey

Background

In case management an individual or small team is responsible for navigating the patient through complex care. Characteristics of case management within and throughout different target groups and settings vary widely. Case management is relatively new in palliative care. Insight into the content of care and organisational characteristics of case management in palliative care is needed.

Objectives

To investigate how many case management initiatives for palliative care there are in the Netherlands for patients living at home; to describe the characteristics of these initiatives with regard to content and organisation of care.

Setting

Primary care.

Design and participants

A nationwide survey of all 50 coordinators of networks in palliative care in the Netherlands was conducted. Additional respondents were found through snowball sampling. We looked at 33 possible initiatives using interviews (n = 33) and questionnaires (n = 30).

Results

We identified 20 initiatives for case management. All stated that case management is supplemental to other care. In all initiatives the case managers are registered nurses and most possess higher vocational education and/or further training. All initiatives seek to identify the multidimensional care needs of the patients and the relatives and friends who care for them. Almost all provide information and support and refer patients who need care. Differences are found between the organisations offering the case management, their target groups, the names of the initiatives and whether direct patient care is provided by the case manager.

Conclusions

In the Netherlands, case management in palliative care is new. Several models of delivery were identified. Research is needed to gain insight into the best way to deliver case management. By describing characteristics of case management in palliative care, an important first step is made in identifying effective elements of case management.     

Randomized Controlled Trial of Advance Care Planning Video Decision Aid for the General Population

ContextAdvance care planning (ACP) in a healthy general population could improve the quality of care when a health problem arises.ObjectivesThe purpose of this study was to evaluate the efficacy of video decision support aid in increasing the intention to document ACP in the general healthy population.MethodsIn this randomized controlled trial, we enrolled 250 members of the general population (aged 20 years and older and determined to be healthy), stratified by age and sex. The intervention was a video that provided information about ACP and end-of-life care options such as cardiopulmonary resuscitation (CPR) and palliative care. An attention-control arm was given a booklet about advance directives. Primary outcome was a change in intention to document ACP. Secondary outcomes included the intention to refuse CPR at terminal status, CPR and palliative care knowledge score, and the Hospital Anxiety and Depression Scale.ResultsAbout 250 participants were randomly assigned, half to the video-assisted intervention group and half to the attention-control group. Within one week postintervention, the intention to document ACP was significantly higher in the video-assisted intervention arm (68.0% vs. 39.2%; P < 0.001), and changes in the intention to document ACP were significantly greater in the video group than in the brochure group (P = 0.008; Δ = 14.4%). Palliative care knowledge score was also significantly increased in the video group (P = 0.036).ConclusionA well-constructed video decision support intervention can increase the intention to document ACP in the general population that presumably had little opportunity to discuss ACP with physicians.     

Using the stages of change model to improve communication about advance care planning

TOPIC: Advance care planning (ACP) is a term intended to describe the dynamic process of discussing wishes for future medical care. PURPOSE: To demonstrate how a behavior change model can be used to enhance ACP. SOURCES: Authors' personal experience, workshops, literature review. CONCLUSIONS: Incorporating behavioral change theory helps develop workable interventions and provides strategies for nurses to approach patients appropriately about planning for future medical care.