Future Care Planning Research Articles

Overcoming challenges in community end of life care during the COVID-19 pandemic.

The coronavirus disease 2019 (COVID-19) pandemic has significantly affected people at the end of life who are being cared for in community settings, as well as their families and the nurses who provide care. This article explores the challenges generated by the COVID-19 pandemic in relation to community end of life care in the UK and reflects on the psychological and emotional consequences for nurses, patients and families. It also discusses some of the fundamental aspects of end of life care in the community and explores how nursing interventions can be adapted to ensure that high standards of care are maintained. The pandemic may provide opportunities for transforming community end of life care and there is a need for further research into how health and social care services have adapted, which would inform future care planning and service provision.

Serious Illness Conversations in advanced kidney disease: a mixed-methods implementation study

ObjectiveAdvanced kidney disease is associated with a high risk of morbidity and mortality. Consequently, invasive treatments such as dialysis may not yield survival benefits. Advance care planning has been encouraged....

'I'm fine!': Assertions of lack of support need among patients with chronic obstructive pulmonary disease: A mixed-methods study.

ObjectivesTo understand how people with Chronic Obstructive Pulmonary Disease (COPD) disavow their support needs and the impact on care.MethodsTwo stage mixed-method design. Stage 1 involved sub-analyses of data from a mixed-method population-based longitudinal study exploring the needs of patients with advanced COPD. Using adapted criteria from mental health research, we identified 21 patients who disavowed their needs from the 235 patient cohort. Qualitative interview transcripts and self-report measures were analysed to compare these patients with the remaining cohort. In stage 2 focus groups (n = 2) with primary healthcare practitioners (n = 9) explored the implications of Stage 1 findings.ResultsPatients who disavowed their support needs described non-compliance with symptom management and avoidance of future care planning (qualitative data). Analysis of self-report measures of mental and physical health found this group reported fewer needs than the remaining sample yet wanted more GP contact. The link between risk factors and healthcare professional involvement present in the rest of the sample was missing for these patients. Focus group data suggested practitioners found these patients challenging.DiscussionThis study identified patients with COPD who disavow their support needs, but who also desire more GP contact. GPs report finding these patients challenging to engage.

Suitability of Video Consultations During the COVID-19 Pandemic Lockdown: Cross-sectional Survey Among Norwegian General Practitioners.

BackgroundThe COVID-19 pandemic imposed an acute, sharp rise in the use of video consultations (VCs) by general practitioners (GPs) in Norway.ObjectiveThis study aims to document GPs’ experiences with the large-scale uptake of VCs in the natural experiment context of the pandemic.MethodsA nationwide, cross-sectional online survey was conducted among Norwegian GPs during the pandemic lockdown (April 14-May 3, 2020). Each respondent was asked to evaluate up to 10 VCs. Basic demographic characteristics of the GPs and their practices were collected. The associations between GPs’ perceived suitability of the VCs, the nature of the patients’ main problems, prior knowledge of the patients (relational continuity), and follow-up of previously presented problems (episodic continuity) were explored using descriptive statistics, diagrams, and chi-square tests.ResultsIn total, 1237 GPs (26% of the target group) responded to the survey. Among these, 1000 GPs offered VCs, and 855 GPs evaluated a total of 3484 VCs. Most GPs who offered VCs (1000/1237; 81%) had no experience with VCs before the pandemic. Overall, 51% (1766/3476) of the evaluated VCs were considered to have similar or even better suitability to assess the main reason for contact, compared to face-to-face consultations. In the presence of relational continuity, VCs were considered equal to or better than face-to-face consultations in 57% (1011/1785) of cases, as opposed to 32% (87/274) when the patient was unknown. The suitability rate for follow-up consultations (episodic continuity) was 61% (1165/1919), compared to 35% (544/1556) for new patient problems. Suitability varied considerably across clinical contact reasons. VCs were found most suitable for anxiety and life stress, depression, and administrative purposes, as well as for longstanding or complex problems that normally require multiple follow-up consultations. The GPs estimate that they will conduct about 20% of their consultations by video in a future, nonpandemic setting.ConclusionsOur study of VCs performed in general practice during the pandemic lockdown indicates a clear future role for VCs in nonpandemic settings. The strong and consistent association between continuity of care and GPs’ perceptions of the suitability of VCs is a new and important finding with considerable relevance for future primary health care planning.

Development of Sarcopenia in Patients With Bladder Cancer: A Systematic Review.

Sarcopenia is known to influence cancer-related complications and overall survival. However, the effect of cancer treatment on the development or progression of sarcopenia is relatively unknown. The primary aim of this systematic review was to determine the prevalence and development of sarcopenia among people with bladder cancer. A systematic search was performed in PubMed, Web of Science, and EMBASE. Studies with ≥2 assessments of sarcopenia were eligible for inclusion. Five retrospective cohorts were included with a total of 438 participants. The baseline prevalence of sarcopenia across studies varied from 25% to 69% and post-treatment prevalence from 50% to 81%. The average loss of muscle mass was 2.2% to 10% during a time course of 3 to 12 months. The prevalence of sarcopenia markedly increased during cancer treatment in patients with bladder cancer. Further research into the effect of different treatment regimens on the development of sarcopenia, and how these changes might affect functional capacity and survival is needed. The development of sarcopenia is important to understand because of its negative affect on quality of life, complications, and mortality. Further, understanding how sarcopenia develops during treatment could potentially strengthen nurses' future care plans for patients with bladder cancer.

Future Care Plan at the Contemplation Stage Among Older Adults

Previous studies have shown that making future care planning often involves several steps. This is consistent with the transtheoretical model of behavior change which identified stages in which behavior changes over time and progresses through a series of six stages (Prochaska & Norcross, 2001). Although most studies on future care planning among older adults have examined the progression from the pre-contemplation stage to an action stage, little is known about the unique characteristics of older adults at the contemplation stage. Our sample included 409 randomly selected older adults in Cleveland, Ohio who were in the first wave of a longitudinal study of successful aging (µage = 78.8, SD=5.74). We used multivariate logistic regression to predict older adults who are more likely to have thought of their future care plans (contemplation stage). Results indicate several individual and relationship factors such as marital status, engaging in health behaviors (not smoking), being young old, and having personal transportation (OR=.42, .63, 2.81, and 1.73) account for contemplating future care. These findings underscore that several individual resources, as well as relationship status, are associated with contemplation stage of future care planning. The results reinforce the idea that future care planning is a stage-based behavior that people engage in, rather than a stand-alone activity.

Towards a Better Perspective on Elderly Care: A Case Study

The percentage of the elderly is increasing on a worldwide scale, and Japan has the highest in the world. Under this difficult demographic situation, how well the elderly can live their later lives is a very important question. The purpose of this study was to find out how the elderly in good health can envisage their future lives in which they need care from others, which may help the elderly make their own care-plans. I conducted semi-structured interviews with one married elderly couple, who had had various experiences of caring for their old parents. While recalling their old days when they used to care for their parents, they were also asked to envisage their own future lives, in which they will need care from others. Based on qualitative descriptive analyses of their interview data, a highly individual care-plan emerged for each study participant. It was suggested that the ways their old parents lived in their later lives, as well as their experiences of caring for them, were strongly reflected in their own future care-plans. In order to envisage one’s realistic future in which he/she needs care from others, concrete experience of relevance may be necessary, which would make it possible to discuss frequently his/her own future life with family, friends, and medical providers.

Dementia care practice: Integrating medical and caregiver support in a community‐based program

AbstractBackgroundDementia is among the most challenging health issues of our time and affects not only the person with dementia (PWD) but their family and other caregivers as well. With no cure or effective disease modifying treatments currently available, having affordable models of care that address caregiver needs as an integral part of medical management of the PWD is widely seen as essential to maximize quality of life, manage safety concerns, plan for future care needs and provide highest quality care. Data is limited regarding cost effectiveness or caregiver and PWD experience of such care models. MemoryCare is a community‐based, out‐patient nonprofit organization serving a largely rural area of western North Carolina for 19 years with a model of care that integrates education, training and support of caregivers with the medical care of persons with Alzheimer’s disease and other types of dementia. Caregivers participate in all clinic visits offering valuable history that informs medical decisions and, with the PWD, contribute to development of care plans. Alongside provision of medical care for the PWD, caregivers receive dementia education, training in behavioral management, resource matching and support specific to their individual needs. In 2019, 1,020 PWD and 3,372 caregivers enrolled at MemoryCare for care services as a supplement to primary care. For the past 5 years, observational data regarding hospitalization rates, 30‐day readmission rates, and ED utilization was collected for PWD seen in MemoryCare’s clinic setting who had been enrolled for at least one year and lived in a defined region where health care utilization could be independently confirmed. Caregiver satisfaction was assessed for the same 5‐year period through anonymous self‐report surveys. Data collected reveal high levels of caregiver satisfaction, increased dementia‐specific knowledge, and perceived improvement in ability to manage dementia‐related behaviors and lengthen time in the home setting. Data shows lower hospitalization and ED visit rates as well as reduced length of stay and readmission rates when compared to published norms. Findings suggest that inclusion of caregivers in the medical model of care for PWD may improve overall outcomes and warrant further study of integration of caregivers into clinical care models.

Using Vignettes to Conduct a Dynamic Value-based Approach to Advance Care Planning

Advanced Care Planning (ACP) refers to a voluntary, non-legally binding discussion about future care plans between an individual...

Receipt of Social Support among Compound and Noncompound Caregivers of Adults with Autism

ABSTRACT For parents of adult children with autism spectrum disorder (ASD), caregiving can be ongoing, beginning at diagnosis and continuing throughout adulthood. As parental caregivers age, many may be faced with additional caregiving responsibilities, such as caring for another loved one. This study examined differences in formal and informal social support used by caregivers providing care to more than one person with at least one being an adult child with ASD (compound caregivers) and those caring for a single adult child with ASD (noncompound caregivers). A nationwide sample of 320 parents (age 50 or older) of adult children with ASD completed a web-based survey to understand use of formal and informal social support. Fisher’s exact probability tests were used to determine significant differences in the extent to which the services were used by the two groups of caregivers. Results indicated that 4 of the 12 formal and 2 of the 6 informal social support services differed significantly between compound and noncompound caregivers. Given that both groups of caregivers were aging, future research should focus on understanding what services are anticipated to be needed as these changes occur and as changes to future care plans are needed, to best support their care-recipients.

Risk Factors for Mortality in Nursing Home Residents: An Observational Study.

Purpose: Identifying mortality risk factors in people living in nursing homes could help healthcare professionals to individualize or develop specific plans for predicting future care demands and plan end-of-life care in this population. This study aims to identify mortality risk factors in elderly nursing home (NH) residents, based on variables adapted to this environment, routinely collected and easily accessible to their healthcare professionals. Methods: A prospective, longitudinal, observational study of NH residents aged 65 years and older was carried out collecting sociodemographic, functional and cognitive status, nutritional variables, comorbidities, and other health variables. These variables were analyzed as mortality risk factors by Cox proportional hazard models. Results: A total of 531 residents (75.3% female; average age 86.7 years (SD: 6.6)) were included: 25.6% had total dependence, 53.4% had moderate to severe cognitive impairment, 84.5% were malnourished or at risk of malnutrition, and 79.9% were polymedicated. Risk of mortality (hazard ratio, HR) increased in totally dependent residents (HR = 1.52; p = 0.02) and in those with moderate or severe cognitive impairment ((HR = 1.59; p = 0.031) and (HR = 1.93; p = 0.002), respectively). Male gender (HR = 1.88; p < 0.001), age ≥80 years (HR = 1.73; p = 0.034), hypertension (HR = 1.53; p = 0.012), atrial fibrillation/arrhythmia (HR = 1.43; p = 0.048), and previous record of pneumonia (HR = 1.65; p = 0.029) were also found to be mortality drivers. Conclusion: Age and male gender (due to the higher prevalence of associated comorbidity in these two variables), certain comorbidities (hypertension, atrial fibrillation/arrhythmia, and pneumonia), higher functional and cognitive impairment, and frequency of medical emergency service care increased the risk of mortality in our study. Given their importance and their easy identification by healthcare professionals in nursing homes, these clinical variables should be used for planning care in institutionalized older adults.

Translating Evidence into Practice: ACOs' Use of Care Plans for Patients with Complex Health Needs.

Care plans are an evidence-based strategy, encouraged by the Centers for Medicare and Medicaid Services, and are used to manage the care of patients with complex health needs that have been shown to lead to lower hospital costs and improved patient outcomes. Providers participating in payment reform, such as accountable care organizations, may be more likely to adopt care plans to manage complex patients. To understand how Medicare accountable care organizations (ACOs) use care plans to manage patients with complex clinical needs. A qualitative study using semi-structured interviews with Medicare ACOs. Thirty-nine interviews were conducted across 18 Medicare ACOs with executive-level leaders and associated clinical and managerial staff. Development, structure, use, and management of care plans for complex patients at Medicare ACOs. Most (11) of the interviewed ACOs reported using care plans to manage care of complex patients. All care plans include information about patient history, current medical needs, and future care plans. Beyond the core elements, care plans included elements based on the ACO's planned use and level of staff and patient engagement with care planning. Most care plans were developed and maintained by care management (not clinical) staff. ACOs are using care plans for patients with complex needs, but their use of care plans does not always meet the best practices. In many cases, ACO usage of care plans does not align with prescribed best practices: ACOs are adapting use of care plans to better fit the needs of patients and providers.

The impact of national context on future care planning for Korean parents in Korea and in New Zealand caring for their children living with disabilities: A cross-national study

An increasing concern of families caring for children living with disabilities is related to planning for their future care. This qualitative study explores how the country contexts shape the plans for future care provision of Korean parents in New Zealand and Korea. Data were collected using semi-structured interviews with parents ( n = 18) and professionals ( n = 18). The study revealed that there are differences and similarities regarding the social reality of future care planning among Koreans in different national contexts. Recommendations are made In support of future care planning process taking its place as a conventional phase of care provision for people living with disabilities.

Qualitative Evaluation of a Future Care Planning Program

We describe efforts to evaluate the impact of the Future Care Planning (FCP) program. To gain deeper understanding of the context and needs of older adults who attended FCP sessions, we conducted follow-up telephone interviews and a qualitative content analysis of the structured interview calls. We identified areas for which Extension can provide continued support, positive programming impacts, and recommendations for future programming. We discuss how our findings will be used for future efforts addressing the topic for older adults and the implications of our findings and method for others in Extension.

Ageing, Comorbidity and Frailty-Synergistic Risk Factors for Covid-19 Adverse Outcomes

With life-expectancy rising globally, the prevalence of ageing, comorbidity and frailty is likely to increase especially in the low and middle income countries. The emergence of the new COVID-19 pandemic has been concentrated in this group of patients and has led to worse outcomes compared to younger and less comorbid populations. This group of patients is at an increased risk of multi-organ consequences of systemic disease. Therefore, systemic assessment of these patients from the outset and optimisation of their pre-existing conditions in addition to the treatment of COVID-19, is required to reduce the risk of multi-organ failure. Decisions regarding escalation of treatment should include frailty assessment along with the overall comorbid condition and function. The expected projection of the ageing population will mean the population is increasingly at risk, locally and globally, of managing a new pandemic, in particular in those low and middle income countries with less access to healthcare resources. Therefore, WHO and governments around the world must consider this potential threat in future health care planning.

What is “fair and reasonable”? Norms and strategies guiding the distribution of assets by testators who have an adult child with intellectual disability

ABSTRACT Background: Parents making a will most commonly distribute assets evenly to adult children. How parents of an adult child with an intellectual disability use wills to plan for future care and support has had limited policy, practice and research attention. Method: This research reports on the perceptions of 20 parents regarding the impact of the needs of their child with disability on estate planning. The participants were purposively recruited and interviewed during 2014–15. Results: Participants were more likely to consider equity of outcomes for their children taking into account retaining access to state services. They report difficulties in future planning in the context of changing service systems and limited specialised advice. Conclusions: Judgements about what is fair and reasonable in distributing assets reflect differing views of need and entitlement within families. Such families would benefit from specialised advice and support in estate planning, particularly given the changing context.

Mortality and Institutionalization After Percutaneous Endoscopic Gastrostomy in Parkinson's Disease and Related Conditions.

Percutaneous endoscopic gastrostomy (PEG) can facilitate feeding and medication administration in dysphagic patients with Parkinson's disease and related disorders. Information on survival, institutionalization, and complications post PEG might inform feeding decisions. A total of 93 patients with Parkinson's disease and related disorders were identified by review of PEG registers and by searching the administrative databases in 2 large UK university hospitals (2005-2017); 83 case notes were available for retrospective review. Care processes and outcomes were assessed. The following were the diagnoses: 58 (70%) had Parkinson's disease, 10 (12%) had progressive supranuclear palsy, 5 (6%) had multiple system atrophy, 3 (4%) had dementia with Lewy bodies, and 7 (8%) had vascular parkinsonism. The median age was 78 years (interquartile range 72-82); 29 (35%) were women. Care processes included a future care plan in place prior to admission for 18 patients (22%), and PEG was placed during emergency admission in 68 patients (82%). The outcomes included median survival at 422 days; 30-day mortality rate was 6% (5 patients); and of 56 patients admitted from home, 18 (32%) were discharged to institutions (nursing or care homes). The most common complication was aspiration pneumonia for 18 (22%) of patients. Age, sex, diagnosis, admission type, comorbidities, and place of residence did not predict survival. Discharge to own home and follow-up by the home enteral feeding team were associated with longer survival. We recommend markers of advanced disease should prompt advanced care planning. Discussions about PEG feeding should include information about post-PEG survival, complications, and risk of institutionalization. Further research is needed on quality-of-life post PEG and ways to reduce aspiration pneumonia. All PEG patients should have nutrition team follow-up.

In Support of Community-based Primary Health Care: Coping with the COVID-19 Crisis.

In Support of Community-based Primary Health Care: Coping with the COVID-19 Crisis.

Considerations for Pediatric Heart Programs During COVID-19: Recommendations From the Congenital Cardiac Anesthesia Society.

Considerations for Pediatric Heart Programs During COVID-19: Recommendations From the Congenital Cardiac Anesthesia Society.

Advance care planning: the future

ObjectivesThere is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.MethodsWe provide a summary of the evidence about what...