Personal advance care planning uptake amongst Australian and New Zealand palliative care medical and nursing professionals

Background: Palliative care (PC) medical and nursing professionals are potentially the most death literate group in the community yet little is known about their personal uptake of advance care planning (ACP) or written advance care directives (ACDs).

Aim: To describe Australian and New Zealand PC medical and nursing professionals’ participation in personal ACP activities.

Method: Between 12 May 2014 and 6 June 2014 an anonymous cross sectional online survey about personal ACP activities was distributed to Australian and New Zealand PC medical and nursing professionals.

Results: The survey link was emailed to 946 medical and nursing PC health professionals with 329 (35%) recipients commencing the survey. Ninety-one percent of participating Australian and New Zealand PC medical and nursing health professionals have engaged in some form of ACP; 21% have a written ACD. Over 80% of those without a current ACD have engaged in an ACP conversation with family or significant others. Thirty percent of doctors did not feel an ACD was relevant for them, 29% considered them a low priority, 27% relied on conversations and 14% felt ACDs were poorly designed or ineffective. These proportions were 15%, 44%, 36%, and 2%, respectively for nurses.

Conclusion: This study supports the notion that familiarity with ACP increases overall participation however, it does not support the popular view that familiarity with ACDs ensures uptake. The favoured mode of ACP amongst this group of health professionals was a conversation outlining values and preferences with family or significant others.     

Elephant in the room - Family members´ perspectives on advance care planning

Objective To explore family members’ experiences of advance care planning in nursing homes.Design Individual interviews. Thematic analysis.Setting Four nursing homes in Sweden.Subjects Eighteen family members of deceased nursing home patients.Main outcome measures Family members’ experiences of advance care planning in nursing homes.Results Family members’ experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient’s preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient’s wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician’s absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions.Conclusion Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient’s wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning.

Key points

• Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited.
• Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking.
• Significance of small details, perceive to symbolize staff competence and respect for patient autonomy.
• To limit family members’ feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.

     

Missed opportunities: nursing insights on end-of-life care for haematology patients

There is now extensive consumer research to indicate that patients with haematological malignancies are not receiving appropriate or timely referrals to the palliative system. This paper begins to explore the issue from the professional perspective by presenting findings from haematology nurses on their experience with terminal care. The nursing insights have been gathered through open-ended interviews with a national sample of nurses with extensive experience in haematology in both public and private hospitals throughout Australia. The findings resonate with the previous consumer research in that all the acute care nurses affirmed that it is their belief, based on their professional experience, that patients from these diagnostic groups typically die in the acute ward dealing with escalating technology and invasive treatments. For some, the statements could be qualified by the satisfaction that they worked in a haematology unit, aware of the death-denying issues, trying to address the problem. Others, caught in a 'refractory' subculture (i.e. a subculture with a negative perception of palliative care), outlined the factors driving the lack of integration for their specific hospital. The focus of the discussion of findings is on the latter.     

医学生预立医疗照护计划知信行调查研究

目的调查医学生对预立医疗照护计划(ACP)的认知、态度、行为意向现状并进行相关影响因素分析。方法本研究为横断面研究。于2019年4—5月,采用便利抽样法选取在广东省3所医学院校及其附属医院实习的医学生作为研究对象。使用一般资料调查问卷、自行设计的医学生ACP知信行问卷对其进行调查。采用多重线性回归分析进行影响因素分析。本次调查共发放问卷276份,回收有效问卷274份,有效回收率为99.3%。结果医学生ACP认知调查问卷的平均正确率为48.75%;ACP态度调查问卷的条目均分为(4.00±0.53)分;医学生ACP行为意向调查问卷的条目均分为(3.94±0.59)分。多重线性回归分析结果显示,对所学专业的态度、有无社会兼职经历、是否听说过ACP以及是否接受过ACP的培训或课程是医学生ACP认知的影响因素(P<0.05);是否进入临床实习和是否有过患者死亡的救治经历是医学生ACP态度的影响因素(P<0.05);对所学专业态度、是否有过患者死亡的救治经历是医学生ACP行为意向的影响因素(P<0.05)。结论医学生对ACP有一定的接受度,但对ACP的知晓率普遍较低。应考虑完善相关教育方法和内容,为医学生在未来临床工作中做好角色适应,提升医学生的人文关怀素养以及ACP在临床中的推广做准备。     

‘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.

     

决策辅助在预立医疗照护计划中的应用进展

本文综述了决策辅助的起源和重要意义、实施条件、内容、质量评价体系以及在预立医疗照护计划中的应用范围、方式、效果。通过总结近年来决策辅助在预立医疗照护计划中的应用,分析决策辅助对预立医疗照护计划的价值,以期为国内预立医疗照护计划干预方案的制定提供新思路,从而推动我国预立医疗照护计划的发展。     

Preconditions for successful advance care planning in nursing homes: A systematic review

ObjectivesThere is growing evidence of the potential effectiveness of advance care planning. Yet important knowledge gaps remain regarding the preconditions for successful implementation of advance care planning in the nursing home setting. We aim to identify the preconditions related to successful advance care planning in the nursing home setting. By specifying those, we would be able to make well-founded choices for the future design and planning of advance care planning intervention programs.DesignA systematic review.Data sourcesPubMed, PsycINFO, EMBASE and CINAHL.Review methodsTwo authors independently screened publications. One author assessed methodological quality and extracted textual data, which was double-checked for a random sample. We extracted textual data and used thematic synthesis to identify “preconditions”, defined as requirements, conditions and elements necessary to achieve the desired outcome of advance care planning, i.e. attaining concordance between residents' preferences and actual care or treatment received at the end of life.Main findingsBased on 38 publications, we identified 17 preconditions at five different levels: resident, family, health-care professional, facility and community. Most preconditions were situated on multiple levels but the majority addressed professionals and the nursing home itself. We summarized preconditions in five domains: to have sufficient knowledge and skills, to be willing and able to participate in advance care planning, to have good relationships, to have an administrative system in place, and contextual factors supporting advance care planning within the nursing home.ConclusionThere are multiple preconditions related to successfully implementing advance care planning in the complex nursing home setting that operate at micro, meso and macro level. Future interventions need to address these multiple domains and levels in a whole-system approach in order to be better implementable and more sustainable, while simultaneously target the important role of the health-care professional and the facility itself.     

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.     

Palliative care in nursing homes: exploring care assistants' knowledge

Aim.  To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context.
Background.  In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent.
Method.  Questionnaire to CAs in 48 of 91 private nursing homes in one UK region.
Findings.  A population of 1135 CAs were targeted with a response rate of 45% ( n  = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes.
Conclusion.  Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group.     

End-of-life care pathways and nursing: a literature review

Aim To identify and discuss the current state of knowledge about end-of-life care (EOLC) pathways in relation to nursing. Background Enhancing EOLC has become a central concern in governments’ health policies worldwide. End-of-life care pathways have been championed as complex interventions to enhance the quality of end-of-life care. However, concerns have been expressed regarding their purpose, initiation and use. Evaluation A range of published literature was used to examine EOLC pathways in relation to nursing. Key issues Three main themes emerged: nursing’s contribution to the evolution of EOLC pathways, implementing EOLC pathways and the influence of EOLC pathways on nursing practice. Conclusions End-of-life care pathways are to be welcomed as a means by which the quality of EOLC might be enhanced. However, the state of knowledge about EOLC pathways, their development, implementation and influence on families and professional practice is in its infancy. Implications for nursing management End-of-life care pathways are championed as a means by which the quality of EOLC, for dying people and their families might be enhanced. However, as concerns regarding the quality of EOLC persist, nursing management has a crucial role in driving forward and supporting EOLC pathway development, implementation and evaluation.     

Developing palliative care practice in nursing and residential care homes: the role of the clinical nurse specialist

The development of practice is but one aspect of Clinical Nurse Specialists' (CNSs) work, and a number of factors act to shape the extent to which CNSs are able to work with and develop practice with nursing and residential care homes. A postal survey of 730 community CNSs in palliative care working in the UK was undertaken to explore the involvement of these nurses with nursing and residential care homes. Much of the focus of the involvement was reactive work meeting the direct clinical needs of residents, primarily with cancer. Although the CNSs perceived that there were some educational and care deficits in these care settings, the amount of proactive work undertaken to improve practice was limited. The development work undertaken was focused on educational initiatives and establishing link nurse systems. There is potential to develop palliative care practice in nursing and residential care homes through practice development initiatives.     

Perspectives of healthy elders on advance care planning

Purpose: To present a qualitative study that explored the perspectives of healthy elders on advance care planning.
Data source: Data were gathered through four focus groups and a demographic questionnaire. The focus group data were analyzed using content analysis. A convenience sample of 20 healthy men and women, aged 60–94 years old, was drawn from one community senior center and two assisted living facilities.
Conclusions: The data reveal five major themes: advance care planning is strongly influenced by concern for others; elders assume that preferences are known to their trusted friends, family, and providers, even in the absence of explicit communication with these people; elders value a healthcare system that supports provider time, focus, and continuity; being "known" to a provider is critical to comfort that advance care planning preferences will be respected; and elders are generally ready and eager to discuss advance care planning. Additional findings include: elders are better prepared for the event of death than the dying process; lawyers and financial planners play a prominent role in guiding elders through end-of-life decisions; and elders believe that the optimal time for advance care planning discussion is during periods of relative wellness.
Implications for practice: Enhanced understanding of the patient perspective is key to incorporating advance care planning for healthy elders in the ideal milieu of primary care.     

An exploratory study of interprofessional collaboration in end-of-life decision-making beyond palliative care settings

As healthcare delivery becomes increasingly interprofessional, it is imperative to identify opportunities for effective collaboration and coordination of care. Drawing on a Canadian qualitative study that adopted a constant comparative method based on the grounded theory approach, we report how healthcare providers’ (HCPs) personal experiences and professional roles intersect with system factors in hindering or enhancing their ability to support patients and families in planning for end-of-life (EOL) care. We used a criterion-based sampling strategy and sought HCPs who had direct experience engaging patients and families in complex healthcare decisions on: (1) initiating, withholding, or withdrawing treatment; (2) care planning; and/or (3) discharge planning. Interviews sought to understand what HCPs perceived as individual, (inter)professional, and system factors that might hinder, promote, or enhance support for patients/families. We present four major intersecting themes from in-depth interviews with 28 HCPs across acute, long-term, and community care settings that represent three barriers and one facilitator: discomfort with death and dying, confusion about role responsibility, lack of coordinated care, and importance of interprofessional teamwork. Attending to system power hierarchy, we explore interprofessional strategies to support patients’ and families’ care experiences and promote team-based decision-making. We recommend an interprofessional team approach to facilitate EOL decision-making across care settings and before death becomes imminent. Increasing educational initiatives and developing tools that focus on interprofessional collaboration may help HCPs to understand each other’s roles and perspectives, so that they can work together to provide a more coherent and coordinated approach to EOL decision-making.     

我国预立医疗照护计划阻碍与促进因素的研究进展

预立医疗照护计划的实施是在充分尊重患者医疗自主权的基础上帮助临终者实现符合本人意愿的治疗和护理,从而提高患者疾病终末期的生活质量。本文对预立医疗照护计划的影响因素进行分析总结,从阻碍和促进的角度指出其存在的问题和未来研究的方向,旨在进一步为我国预立医疗照护计划研究与实践提供参考。     

预前照护计划干预效果的Meta分析

目的：系统综述和评价预前照护计划干预的应用效果。方法：计算机检索Cochrane图书馆、Pubmed、EMbase、中国生物医学文献数据库（CBM）、中国知网(CNKI)和万方数据库中关于预前照护计划的随机对照试验,按纳入及排除标准筛选文献并进行质量评价,采用RevMan 5.3软件处理,对纳入文献进行Meta分析。结果：共纳入14篇随机对照试验,受试者4 610例。Meta分析结果显示,干预组签署预先指示者多于对照组[OR=3.50,95%CI（1.89,6.51）,P<0.01];干预组代理人预测患者治疗意愿的准确性高于对照组[OR=3.58,95%CI（1.72,7.45）,P=0.0007];在决策冲突方面,干预组与对照组差异无统计学意义[WMD= -0.02,95%CI（-0.15,0.11）,P=0.75];同时干预有助于提高患者对预先指示的接受度,不会给患者带来任何心理精神方面的压力,但干预是否可以改善患者预先指示认知状况的证据尚不充分。结论：预前照护计划干预可以提高患者生命意愿表达率和代理人预测的准确性、有助于患者接受预先指示,不引发任何心理精神压力问题,但对患者决策冲突和认知水平的影响效果还不确定,仍有待临床开展多中心、大样本随机对照试验来证实。     

Comparisons of the cost-effectiveness among hospital chronic care, nursing home placement, home nursing care and family care for severe stroke patients

AIM: This study compared the cost and effectiveness of long-term institutional care and home care for stroke patients with severe physical disabilities. BACKGROUND: Whether home care is more economical or effective than institutional care for patients with chronic illnesses remains controversial when the cost of family labour is considered. Thus, decisions concerning the appropriate type of care setting for patients with severe chronic illness remain difficult. METHODS: From November 1995 to March 1996, 313 hospitalized stroke patients with severe physical disabilities treated at one of five hospitals in the Taipei metropolitan area were followed from the day of hospital discharge until the third month after discharge. These 313 patients were divided into four groups as follows: (1) 106 who were admitted to a chronic care unit in a hospital, (2) 60 who were admitted to nursing homes, (3) 60 who received professional home nursing care and (4) 87 who returned home without receiving professional care. The change of physical functional status in the patient was examined as the difference between activities of daily living (ADL) scores measured at discharge and at the end of the third month after discharge. RESULTS: Information on family costs for caregiving, including pay for long-term services utilized, labour costs for caregiving and out-of-pocket expenditures for miscellaneous materials was obtained during a weekly telephone interview. The results indicated that caring for patients in their own homes was not only more expensive but was also less effective in improving ADL scores than caring for patients in nursing homes and in chronic care units of hospitals. CONCLUSIONS: The results suggest that caring for patients with severe physical disabilities in institutions is more appropriate than caring of them at home.     

Palliative care for patients with cancer: district nurses' experiences

AIM: This paper reports a study exploring district nurses' experiences of providing palliative care for patients with cancer and their families. BACKGROUND: There is an increasing demand for palliative care in the community, as many patients wish to die at home. District nurses are central to providing palliative care in the community, but there is a dearth of literature on district nurses' experiences in palliative care. METHOD: A Husserlian phenomenological approach was adopted with a purposive sample of 25 female district nurses. Data were collected using unstructured, tape-recorded interviews and analysed using Colaizzi's seven stages of data analysis. FINDINGS: Four themes were identified: the communication web; the family as an element of care; challenges for the district nurse in symptom management and the personal cost of caring. CONCLUSIONS: District nurses' experiences of providing palliative care to family units was challenging but rewarding. The emotive nature of the experience cannot be under-estimated, as many district nurses were touched by the varying situations. Whilst acknowledging the need to maintain an integrated approach to care, district nurses should be identified as the key workers in the complex situation of palliative care.     

End-of-life: An urgent update in nursing terminology

Although nursing terminologies and classifications represent nursing knowledge across diverse clinical areas, end-of-life care seems under represented in many aspects of these instruments. NANDA- I is an international nursing diagnostic classification widely used in nursing education and research. This taxonomy is based on seven axes, including the axis of time. In this commentary we bring discussion to the need to update nursing terminology by including the term end-of-life in the time axis of NANDA-I. After describing the epidemiologic aspects of end-of-life care and discussing the relevant nursing role, we discuss patients' and family's human responses towards the end-of-life time and circumstance, which are central to defining nursing diagnoses. End-of-life care is one priority in health care, and nursing diagnoses should represent that situation as well. This paper focuses on a specific and international nursing diagnosis classification, NANDA-I, which lacks an end-of-life component to its time axis for defining labels of nursing diagnoses. Attending to the importance of classifications in clinical reasoning, nursing diagnoses could better represent responses towards this health condition, opening new opportunities for increasing nursing roles in clinical practice, and also for new studies aiming to validate nursing diagnoses, and promoting an evidence-based practice by including end-of-life in the axis time.