OBJECTIVES: Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.
METHODS: A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.
RESULTS: Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.
CONCLUSIONS: Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.
Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).
Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33).
Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP.
Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
This study examined racial, ethnic, and other factors associated with whether older adults discussed their end-of-life (EOL) care wishes with family. A sample of 223 White, 95 African American, and 46 Hispanic adults aged 50 and older from a five-county area of Florida answered questions about sociodemographics, health, and preferences for involving family/friends in health-care decision-making. Analyses describe associations between whether discussions occurred and race/ethnicity and other factors, including preferences for family/friend involvement in health care. In descriptive analyses, one third (n = 113) had not discussed EOL care. No differences were evident between African Americans and non-Hispanic Whites. In multivariate analyses, EOL care discussions were less likely for Hispanics. Further analysis showed this lower likelihood existed among Hispanics with lesser family/friend involvement. Ethnicity influences EOL care discussion, moderated by family/friend involvement, though results are considered preliminary. Knowing the involvement of patients' family/friends could help providers initiate EOL care discussions.
Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance.
Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP.
Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources.
Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.
Context: Prioritizing amongst potentially conflicting end-of-life values may help patients discriminate amongst treatments and allow clinicians to align treatments with values.
Objectives: To investigate end-of-life values that patients prioritize when facing explicit trade-offs and identify predictors of patients whose values and treatment preferences seem inconsistent.
Methods: Analysis of surveys from a multi-center cluster-randomized trial of patients with serious illness. Respondents prioritized end-of-life values and identified cardiopulmonary resuscitation (CPR) preferences in two health states.
Results: Of 535 patients, 60% prioritized relief of discomfort over extending life, 17% prioritized extending life over relief of discomfort, and 23% were unsure. Patients prioritizing extending life were most likely to prefer CPR, with 93% preferring CPR in current health and 67% preferring CPR if dependent on others, compared to 69% and 21% respectively for patients prioritizing relief of discomfort, and 78% and 33% respectively for patients unsure of their prioritized value (p<0.001 for all comparisons). Among patients prioritizing relief of discomfort, preference for CPR in current health was less likely among older patients (OR 0.958 per year; 95%CI 0.935,0.981) and more likely with better self-perceived health (OR 1.402 per level of health; 95%CI 1.090,1.804).
Conclusion: Clinicians face challenges as they clarify patient values and align treatments with values. Patients' values predicted CPR preferences, but a substantial proportion of patients expressed CPR preferences that appeared potentially inconsistent with their primary value. Clinicians should question assumptions about relationships between values and CPR preferences. Further research is needed to identify ways to use values to guide treatment decisions.
Objective: To improve patient participation in advance care planning in nursing homes where most patients have some degree of cognitive impairment.
Methods: This was a pair-matched cluster randomized clinical trial with eight wards in eight Norwegian nursing homes. We randomized one ward from each of the matched pairs to the intervention group. We included all patients above 70. The primary outcome was prevalence of documented patient participation in end-of-life treatment conversations. The intervention included implementation support using a whole-ward approach where regular staff perform advance care planning and invite all patients and next of kin to participate.
Results: In intervention group wards the patients participated more often in end-of-life treatment conversations (p < 0.001). Moreover, the patient's preferences, hopes AND worries (p = 0,006) were more often documented, and concordance between provided TREATMENT and patient preferences (p = 0,037) and next of kin participation in advance care planning with the patient (p = 0,056) increased.
Conclusion: Improved patient participation - also when cognitively impaired - is achievable through advance care planning in nursing homes using a whole-ward approach.
Practice implications: Patients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be used to implement advance care planning.
The purpose of this study was to investigate choice of and comfort with health care proxy among older adults (N = 240). Results indicated that choice of proxy follows a hierarchical compensation model. Perceived similarity regarding end-of-life preferences and political views were not associated with comfort with proxy; however, perceived similarity with regards to religious values was associated with comfort with proxy. Attempts to promote advance care planning and advance directives may benefit from emphasizing individuals’ choice and autonomy but also their opportunity to designate a health care proxy who they feel represents their religious values.
Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
BACKGROUND: Goal of palliative care is to experience a good death. Understanding the perceptions of elderly patients and their relatives about this issue should provide healthcare professionals with practical guidance in order to achieve this goal.
OBJECTIVES: To determine and compare the perceptions of elderly patients and relatives regarding wishes during their end-of-life (EOL) period.
METHODS: This was a cross-sectional study conducted at Siriraj and Srinagarind Hospital in Thailand from September 2017 to February 2018. A questionnaire was given to elderly patients and the relatives of them. The patients were asked to respond to the questions as though they were terminally-ill patients, and relatives were asked to imagine how elderly people would respond to the questions.
RESULTS: We recruited 608 elderly patients and 607 relatives. The most important issue in both groups was"receiving the full truth about their illnesses". The perceptions of the patients and relatives differed significantly in 8/13 areas covered in the questionnaire. Independent factors associated with preference for home death were elderly from Khon Kaen (adjusted odds ratio (AOR) 2.6;95%CI 1.7,4.1), previous self-employed/general work compared to individuals who did not work (AOR 0.5;95%CI 0.3,0.9), low educational level (AOR 2.3;95%CI 1.3,4.0), low income (AOR 1.7;95%CI 1.1,2.5), greater family size (AOR 1.7;95%CI 1.1,2.6) and dissatisfaction in life (AOR 2.5;95%CI 1.1,5.4).
CONCLUSION: Receiving the full truth about their illnesses was the most important issue for participants in both groups. The major differences between the two groups had to do with autonomy. Factors influencing place of death were location of patients, previous occupation, educational level, family income, family size and dissatisfaction in life.
General practitioners (GPs) play a key role in the timely diagnosis of dementia and also in advance care planning (ACP). They often have known patients and their families for decades and are familiar with their values and treatment preferences; they are, therefore, in a position to initiate the ACP process even before the appearance of the first symptoms of dementia and certainly following disclosure of the diagnosis. To do so, they should recognise whether patients are receptive to an ACP consultation or whether they might reject it for personal, social or cultural reasons. Under no circumstances should the patient or their family be coerced into making these provisions. In most countries, the current framework does not provide enough time and money for GPs to carry out actual ACP consultations completely on their own. There is evidence that specially trained health professionals are able to more effectively discuss treatment goals and limits of life-prolonging measures than GPs who are well acquainted with their patients. Consequently, we suggest that it will be the GPs' task to seize the right moment for starting an ACP process, to raise awareness of patients and their relatives about ACP, to test the patient's decision-making capacity and, finally, to involve appropriately trained healthcare professionals in the actual ACP consultation process. Care should be taken that these professionals delivering time-intensive ACP consultations are not only able to reflect on the patient's values but are also familiar with the course of the disease, the expected complications and the decisions that can be anticipated. The GP will ensure an active exchange with the ACP professional and should have access to the documentation drawn up in the ACP consultation process (treatment plan and advance directive including instructions for medical emergencies) as soon as possible. GPs as coordinators of healthcare provision should document appropriately all specialists involved in the care and ensure that treatment decisions are implemented in accordance with the patient's preferences for future care or the presumed will of the patient.
Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP.
Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults.
Design: Cross-sectional secondary data.
Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study.
Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables.
Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP.
Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.
Background and Objectives: Advance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics).
Research Design and Methods: Using a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets (n = 232).
Results: Descriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences.
Discussion and Implications: Older foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals' life spans and affect older immigrants' EOL preparation and care.
This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
BACKGROUND AND PURPOSE: Huntington disease (HD) is a progressive neurodegenerative disorder. There are no HD-specific measures to assess for end-of-life (EOL) preferences that have been validated for clinical use. The purpose of this study is to demonstrate reliability and validity of three HD-specific EOL measures for use in and clinical research settings.
METHODS: We examined internal reliability, test-retest reliability, floor and ceiling effects, convergent and discriminant validity, known groups' validity, measurement error, and change over time to systematically examine reliability and validity of the HDQLIFE EOL measures.
RESULTS: Internal consistency and test-retest reliability were >0.70. The measures were generally free of floor and ceiling effects and measurement error was minimal. Convergent and discriminant validity were consistent with well-known constructs in the field. Hypotheses for known groups validity were partially supported (there were generally group differences for the EOL planning measures, but not for meaning and purpose or concern with death and dying). Measurement error was acceptable and there were minimal changes over time across the EOL measures.
CONCLUSIONS: Results support the clinical utility of the HDQLIFE EOL measures in persons with HD.
Background: Advance care planning (ACP) often occurs too late in the disease course of those who are affected by brain tumors. Furthermore, the perspectives of brain tumor stakeholders on ACP are not well described. We reviewed a social media tweet chat to understand barriers to ACP experienced by brain tumor stakeholders.
Methods: We used qualitative methods to analyze a tweet chat (real-time virtual discussion) of brain tumor stakeholders. The one-hour tweet chat was hosted by Brain Tumor Social Media chat (@BTSMchat), a patient-run Twitter community, in January 2018. Participants reflected on four questions about ACP by including the hashtag "#BTSM" in tweets. Unique tweets and stakeholder type (i.e., patient, caregiver, advocate or organization member, clinician or researcher, or @BTSMchat leader) were coded. The tweet chat was qualitatively analyzed to identify key themes.
Results: A total of 52 participants from four countries contributed 336 tweets. Most participants were patients (people with brain tumors), followed by clinicians or researchers, and advocates or organizations. Three key themes emerged regarding brain tumor stakeholder perspectives about ACP: (1) attitudinal barriers prevent discussions of death; (2) need to ensure one's voice is heard; and (3) Goldilock's approach to timing-fearing ACP is too early or too late.
Conclusions: Various stakeholders, including people with brain tumors, shared perspectives on ACP through a tweet chat and highlighted important challenges and opportunities. Twitter is a new avenue for patients, clinicians, and advocates to engage with each other to better understand each other's perspectives related to ACP.
BACKGROUND: Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.
METHODS: A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.
RESULTS: Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.
CONCLUSION: Future research should focus on ways to involve people with dementia in decision-making through supported means.
BACKGROUND: The process of advance care planning (ACP) encompasses learning about and planning for end-of-life (EOL) decisions, documenting preferences through legal forms known as Advance Directives (ADs), and having discussions with loved ones to share these preferences. While most ethnic minority groups have low ACP engagement and AD completion rates, Chinese Americans face additional challenges related to cultural beliefs and ACP.
PURPOSE: The purpose of this study was to estimate the impact of a culturally tailored nurse-driven educational intervention on the relationship between attitudes toward ADs and AD completion and ACP discussions.
DESIGN: Pre-posttest, repeated measures non-experimental design.
METHODS: A convenience sample of Chinese Americans participated in a culturally tailored nurse led AD and ACP workshop in English and Mandarin in a Chinese Community Center. Participants completed surveys before and after the workshop and at one-month follow-up.
RESULTS: Seventy-two Chinese Americans participated in this study. Most were female and born in China. Attitudes toward ADs improved after participating in the workshop and remained consistent at one-month follow-up. There was a significant positive relationship between attitudes and AD completion and ACP discussions.
CONCLUSIONS: Nurse-driven interventions improved engagement in the ACP process in Chinese Americans, a population thought to be averse to discussing death and dying and one with lower than average AD completion rates. Using culturally tailored interventions improves engagement in the ACP process.
AIMS AND OBJECTIVES: The aim of this study was to explore the experiences and processes of advance care planning (ACP) discussions in older residents of a long-term care institution.
BACKGROUND: ACP can facilitate discussion about end-of-life care and help to identify individual's views, wishes and beliefs about dying at a time when they have the cognitive capacity to reflect on and/or make such decisions.
DESIGN: A qualitative study was conducted.
METHODS: Twenty-eight older adults in a long-term care institution participated in person-to-person interviews using an ACP booklet, which included topics such as life review, healthy habits and behaviors, and end-of-life care issues and information. The discussions were recorded and thematic analysis was used to analyze the qualitative data. The Standards for Reporting Qualitative Research (SRQR) checklist was followed.
RESULTS: Three themes were identified. First, participants identified that ACP could help to ensure that they achieved their view of a 'good death'. Second, the process of ACP bought up difficult decisions that many participants expressed uncertainty about making. Third, participants' ability and willingness to plan for end of life were shaped by considerations about their family members' needs, views and potential role as their future carer.
CONCLUSIONS: The ACP process involved not only personal ideas about good death but also families' concerns. Uncertainty and lack of information created difficult barriers Relevance to clinical practice: Healthcare professionals could address the concept of good death, deliver information for their concerns, and promote communication with family members. This article is protected by copyright. All rights reserved.