Using advance and emergency care plans during transfer decisions: A grounded theory interview study with care home staff.
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ABSTRACT: Background
Advance care planning has been identified as one of few modifiable factors that could reduce hospital transfers from care homes. Several types of documents may be used by patients and clinicians to record these plans. However, little is known about how plans are perceived and used by care home staff at the time of deterioration.Aim
To describe care home staff experiences and perceptions of using written plans during in-the-moment decision-making about potential resident hospital transfers.Design
Qualitative semi-structured interviews analysed using the Straussian approach to grounded theory.Setting/participants
Thirty staff across six care homes (with and without nursing) in the East and West Midlands of England.Results
Staff preferred (in principle) to keep deteriorating residents in the care home but feared that doing so could lead to negative repercussions for them as individuals, especially when there was perceived discordance with family carers' wishes. They felt that clinicians should be responsible for these plans but were happy to take a supporting role. At the time of deterioration, written plans legitimised the decision to care for the resident within the home; however, staff were wary of interpreting broad statements and wanted plans to be detailed, specific, unambiguous, technically 'correct', understood by families and regularly updated.Conclusions
Written plans provide reassurance for care home staff, reducing concerns about personal and professional risk. However, care home staff have limited discretion to interpret plans and transfers may occur if plans are not specific enough for care home staff to use confidently.
SUBMITTER: Harrad-Hyde F
PROVIDER: S-EPMC8796154 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundTrainees are responsible for conducting advance care discussions but are often stressed by this role.ObjectiveWe developed an instrument to determine whether residents could identify a clinical scenario that necessitated an examination of a patient's goals and preferences as they pertain to clinical care, and subsequently measured their readiness to engage in such discussions.MethodsParticipants responded verbally to open-ended case presentations and completed survey items. We scored responses according to proximity to idealized answers.ResultsThe sample consisted of 44 internal medicine residents, 12 students, 5 hospitalists, and 3 palliative care attendings, all of whom volunteered for the study and participated in standard interviews. Residents had widely varying scores (range 0-12, maximum score of 15) on the scored open response items. For eliciting values, mean score increased with training, and students, trainees, and attending physicians had mean scores of 3.7, 5.7, and 8.7, respectively (P = .01). For recommending care, mean scores were 3.0, 6.5, and 9.3, respectively (P < .001). Scores were correlated closely with increasing clinical experience and inversely with self-reported stress when conducting a goals-of-care discussion. The Kuder-Richardson Formula 20 reliability for the instrument was 0.52. Interrater reliability for sections about eliciting and recommending care were 0.64 (P < .001) and 0.50 (P < .001), respectively. The 1-week test-retest reliability was 0.91 for open response items and 0.76 for Likert responses.ConclusionsA verbally administered instrument can readily and rapidly characterize a trainee's readiness to participate in advance care planning with patients.
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Project description:ObjectiveAdvance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice.DesignFace-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors' decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis.SettingDoctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia.ParticipantsA total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs.ResultsFour themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients' ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment).ConclusionsACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients' best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors' knowledge and confidence in ACP and enacting ACDs.
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| S-EPMC6797173 | biostudies-literature
Project description:ImportanceRegional, facility, and racial and ethnic variability in intensity of care provided to nursing home residents with advanced dementia is well documented but poorly understood.ObjectiveTo assess the factors associated with facility and regional variation in the intensity of care for nursing home residents with advanced dementia.Design, setting, and participantsIn the ADVANCE (Assessment of Disparities and Variation for Alzheimer Disease Nursing Home Care at End of Life) qualitative study, conducted from June 1, 2018, to July 31, 2021, nationwide 2016-2017 Medicare Minimum Data Set information identified 4 hospital referral regions (HRRs) with high (n = 2) and low (n = 2) intensity of care for patients with advanced dementia based on hospital transfer and tube-feeding rates. Within those HRRs, 14 facilities providing relatively high-intensity and low-intensity care were recruited. A total of 169 nursing home staff members were interviewed, including administrators, directors of nursing, nurses, certified nursing assistants, social workers, occupational therapists, speech-language pathologists, dieticians, medical clinicians, and chaplains.Main outcomes and measuresData included 275 hours of observation, 169 staff interviews, and abstraction of public nursing home material (eg, websites). Framework analyses explored organizational factors and staff perceptions across HRRs and nursing homes in the following 4 domains: physical environment, care processes, decision-making processes, and implicit and explicit values.ResultsAmong 169 staff members interviewed, 153 (90.5%) were women, the mean (SD) age was 47.6 (4.7) years, and 54 (32.0%) were Black. Tube-feeding rates ranged from 0% in 5 low-intensity facilities to 44.3% in 1 high-intensity facility, and hospital transfer rates ranged from 0 transfers per resident-year in 2 low-intensity facilities to 1.6 transfers per resident-year in 1 high-intensity facility. The proportion of Black residents in facilities ranged from 2.9% in 1 low-intensity facility to 71.6% in 1 high-intensity facility, and the proportion of Medicaid recipients ranged from 45.3% in 1 low-intensity facility to 81.3% in 1 high-intensity facility. Factors distinguishing facilities providing the lowest-intensity care from those providing the highest-intensity care facilities included more pleasant physical environment (eg, good repair and nonmalodorous), standardized advance care planning, greater staff engagement in shared decision-making, and staff implicit values unfavorable to tube feeding. Many staff perceptions were ubiquitous (eg, adequate staffing needs), with no distinct pattern across nursing homes or HRRs. Staff in all nursing homes expressed assumptions that proxies for Black residents were reluctant to engage in advance care planning and favored more aggressive care. Except in nursing homes providing the lowest-intensity care, many staff believed that feeding tubes prolonged life and had other clinical benefits.Conclusions and relevanceThis study found that variability in the care of patients with advanced dementia may be reduced by addressing modifiable nursing home factors, including enhancing support for low-resource facilities, standardizing advance care planning, and educating staff about evidence-based care and shared decision-making. Given pervasive staff biases toward proxies of Black residents, achieving health equity for nursing home residents with advanced dementia must be the goal behind all efforts aimed at reducing disparities in their care.
| S-EPMC8787681 | biostudies-literature
Project description:INTRODUCTION:Frail older people are known to have low rates of advance care planning (ACP). Many frail patients prefer less aggressive treatment, but these preferences are often not known or respected. Frail patients often have multiple hospital admissions, potentially providing opportunities for ACP. OBJECTIVE:To systematically review the literature concerning ACP with frail older people in the acute hospital, with particular reference to: (1) Does ACP improve outcomes? (2) What are the views of patients, relatives and healthcare professionals regarding ACP? (3) Does ACP currently occur? (4) What are the facilitators and barriers to ACP? DESIGN:Systematic literature review and narrative synthesis. Electronic search of MEDLINE, CINAHL, ASSIA, PsycINFO and Embase databases from January 1990 to May 2019 inclusive. Studies in the acute setting of populations with a mean age >75 years, not focused on a disease-specific terminal condition were included. RESULTS:16 133 articles were retrieved, 14 met inclusion criteria. No studies used an objective measure of frailty. One randomised controlled trial (RCT) found that ACP improves outcomes for older patients. Although 74%-84% of capacitous older inpatients are receptive to ACP, rates of ACP are 0%-5%; the reasons for this discrepancy have been little studied. The nature of ACP in clinical practice is unknown thus the extent to which it reflects the RCT intervention cannot be assessed. The outcomes that are important to patients are poorly understood and family and physician experiences have not been explored. CONCLUSIONS:A better understanding of this area could help to improve end-of-life care for frail older people. PROSPERO REGISTRATION NUMBER:CRD42017080246.
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Project description:BackgroundComplex challenges may arise when patients present to emergency services with an advance decision to refuse life-saving treatment following suicidal behaviour.AimsTo investigate the use of advance decisions to refuse treatment in the context of suicidal behaviour from the perspective of clinicians and people with lived experience of self-harm and/or psychiatric services.MethodForty-one participants aged 18 or over from hospital services (emergency departments, liaison psychiatry and ambulance services) and groups of individuals with experience of psychiatric services and/or self-harm were recruited to six focus groups in a multisite study in England. Data were collected in 2016 using a structured topic guide and included a fictional vignette. They were analysed using thematic framework analysis.ResultsAdvance decisions to refuse treatment for suicidal behaviour were contentious across groups. Three main themes emerged from the data: (a) they may enhance patient autonomy and aid clarity in acute emergencies, but also create legal and ethical uncertainty over treatment following self-harm; (b) they are anxiety provoking for clinicians; and (c) in practice, there are challenges in validation (for example, validating the patient's mental capacity at the time of writing), time constraints and significant legal/ethical complexities.ConclusionsThe potential for patients to refuse life-saving treatment following suicidal behaviour in a legal document was challenging and anxiety provoking for participants. Clinicians should act with caution given the potential for recovery and fluctuations in suicidal ideation. Currently, advance decisions to refuse treatment have questionable use in the context of suicidal behaviour given the challenges in validation. Discussion and further patient research are needed in this area.Declaration of interestD.G., K.H. and N.K. are members of the Department of Health's (England) National Suicide Prevention Advisory Group. N.K. chaired the National Institute for Health and Care Excellence (NICE) guideline development group for the longer-term management of self-harm and the NICE Topic Expert Group (which developed the quality standards for self-harm services). He is currently chair of the updated NICE guideline for Depression. K.H. and D.G. are NIHR Senior Investigators. K.H. is also supported by the Oxford Health NHS Foundation Trust and N.K. by the Greater Manchester Mental Health NHS Foundation Trust.
| S-EPMC6582215 | biostudies-literature
Project description:OBJECTIVE:Community paramedicine (CP) is a model of community-based health care being used around the world. Our objective was to study the patient perspective and valuation of this type of program to understand its potential value for primary care innovation in the future. STUDY SETTING:The EPIC community paramedicine program is a partnership between primary care physicians and specially trained community paramedics, designed to provide in-home support for complex chronic disease patients in Ontario, Canada. STUDY DESIGN:As part of an ongoing clinical trial we designed an embedded qualitative evaluation using constructionist grounded theory methodology. DATA COLLECTION METHODS:Data collection included in-depth interviews with 30 patients and/or family members and 60 hours of observation. PRINCIPAL FINDINGS:The health care needs of this complex population are largely attributes that impact a patient's quality of life-including recognition of their vulnerability, providing a safety-net in times of exacerbation and health education and accountability. This seems to be facilitated by a relationship with a dedicated provider that increases continuity of care. CONCLUSIONS:Home-based community paramedicine programs like EPIC appear to be able to create a patient-centered, safe, responsive therapeutic relationship that is often not possible within the standard primary health care system.
| S-EPMC6153157 | biostudies-literature
Project description:Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.
| S-EPMC5915160 | biostudies-literature
Project description:ObjectiveGrounded theory (GT) is an established qualitative research method, but few papers have encapsulated the benefits, limits, and basic tenets of doing GT research on user and provider experiences of health care services. GT can be used to guide the entire study method, or it can be applied at the data analysis stage only.MethodsWe summarize key components of GT and common GT procedures used by qualitative researchers in health care research. We draw on our experience of conducting a GT study on amyotrophic lateral sclerosis patients' experiences of health care services.FindingsWe discuss why some approaches in GT research may work better than others, particularly when the focus of study is hard-to-reach population groups. We highlight the flexibility of procedures in GT to build theory about how people engage with health care services.ConclusionGT enables researchers to capture and understand health care experiences. GT methods are particularly valuable when the topic of interest has not previously been studied. GT can be applied to bring structure and rigor to the analysis of qualitative data.
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Project description:BackgroundAdvance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning.AimTo explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals.DesignA qualitative study (February-July 2019) using semi-structured interviews.SettingTwo residential aged care facilities in one Australian rural town.ParticipantsFifteen informants [family (n = 4), staff (n = 5), health professionals (n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences.ResultsAdvance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The 'conversation' was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident.ConclusionWhile advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.
| S-EPMC8189000 | biostudies-literature