Value, Chronic Critical Illness, and Choosing Wisely.

Management of limited health-care resources has been of growing concern. Stewardship of health-care dollars and avoidance of low-value care is being increasingly recognized as a matter that affects all practitioners. This review aims to examine a particular pathological state with multifactorial origins: chronic critical illness (CCI). This condition exerts a large toll on society as well as individual patients and their families. Here, we offer a brief review as to the incidence/prevalence of CCI and suggestions for prevention. Emphasis should be placed on the importance of early, open communication among physicians and patients about their end-of-life decisions and advanced directives, so that decisions can be made wisely and with the patient's best interests in mind.

Advance Care Planning in an Accountable Care Organization Is Associated with Increased Advanced Directive Documentation and Decreased Costs.

BACKGROUND: Advance care planning (ACP) documents patient wishes and increases awareness of palliative care options. OBJECTIVE: To study the association of outpatient ACP with advanced directive documentation, utilization, and costs of care. DESIGN: This was a case-control study of cases with ACP who died matched 1:1 with controls. We used 12 months of data pre-ACP/prematch and predeath. We compared rates of documentation with logit model regression and conducted a difference-in-difference analysis using generalized linear models for utilization and costs. SETTING/SUBJECTS: Medicare beneficiaries attributed to a large rural-suburban-small metro multisite accountable care organization from January 2013 to April 2016, with cross reference to ACP facilitator logs to find cases. MEASUREMENTS: The presence of advance directive forms was verified by chart review. Cost analysis included all utilization and costs billed to Medicare. RESULTS: We matched 325 cases and 325 controls (51.1% female and 48.9% male, mean age 81). 320/325 (98.5%) ACP versus 243/325 (74.8%) of controls had a Healthcare Power of Attorney (odds ratio [OR] 21.6, 95% CI 8.6-54.1) and 172/325(52.9%) ACP versus 145/325 (44.6%) controls had Practitioner Orders for Life Sustaining Treatment (OR 1.40, 95% CI 1.02-1.90) post-ACP/postmatch. Adjusted results showed ACP cases had fewer inpatient admissions (-0.37 admissions, 95% CI -0.66 to -0.08), and inpatient days (-3.66 days, 95% CI -6.23 to -1.09), with no differences in hospice, hospice days, skilled nursing facility use, home health use, 30-day readmissions, or emergency department visits. Adjusted costs were $9,500 lower in the ACP group (95% CI -$16,207 to -$2,793). CONCLUSIONS: ACP increases documentation and was associated with a reduction in overall costs driven primarily by a reduction in inpatient utilization. Our data set was limited by small numbers of minorities and cancer patients.

Development of a tethered personal health record framework for early end-of-life discussions.

OBJECTIVES: End-of-life planning, known as advance care planning (ACP), is associated with numerous positive outcomes, such as improved patient satisfaction with care and improved patient quality of life in terminal illness. However, patient-provider ACP conversations are rarely performed or documented due to a number of barriers, including time required, perceived lack of skill, and a limited number of resources. Use of tethered personal health records (PHRs) may help streamline ACP conversations and documentations for outpatient workflows. Our objective was to develop an ACP-PHR framework that would be for use in a primary care, outpatient setting. STUDY DESIGN: Qualitative content analysis of focus groups and cognitive interviews (participatory design). METHODS: A novel PHR-ACP tool was developed and tested using data and feedback collected from 4 patient focus groups (n = 13), 1 provider focus group (n = 4), and cognitive interviews (n = 22). RESULTS: Patient focus groups helped develop a focused, 4-question PHR communication tool. Cognitive interviews revealed that, while patients felt framework content and workflow were generally intuitive, minor changes to content and workflow would optimize the framework. CONCLUSIONS: A focused framework for electronic ACP communication using a patient portal tethered to the PHR was developed. This framework may provide an efficient way to have ACP conversations in busy outpatient settings.

Economic (gross cost) analysis of systematically implementing a programme of advance care planning in three Irish nursing homes.

BACKGROUND: Although advance care planning (ACP) and the use of advanced care directives (ACD) and end-of-life care plans are associated with a reduction in inappropriate hospitalisation, there is little evidence supporting the economic benefits of such programmes. We assessed the economic impact (gross savings) of the Let Me Decide (LMD) ACP programme in Ireland, specifically the impact on hospitalisations, bed days and location of resident deaths, before and after systematic implementation of the LMD-ACP combined with a palliative care education programme. METHODS: The LMD-ACP was introduced into three long-term care (LTC) facilities in Southern Ireland and outcomes were compared pre and post implementation. In addition, 90 staff were trained in a palliative care educational programme. Economic analysis including probabilistic sensitivity analysis was performed. RESULTS: The uptake of an ACD or end-of-life care post-implementation rose from 25 to 76%. Post implementation, there were statistically significant decreases in hospitalisation rates from baseline (hospitalisation incidents declined from 27.8 to 14.6%, z = 3.96, p < 0.001; inpatient hospital days reduced from 0.54 to 0.36%, z = 8.85, p < 0.001). The percentage of hospital deaths also decreased from 22.9 to 8.4%, z = 3.22, p = 0.001. However, length of stay (LOS) increased marginally (7-9 days). Economic analysis suggested a cost-reduction related to reduced hospitalisations ranging between €10 and €17.8 million/annum and reduction in ambulance transfers, estimated at €0.4 million/annum if these results were extrapolated nationally. When unit costs and LOS estimates were varied in scenario analyses, the expected cost reduction owing to reduced hospitalisations, ranged from €17.7 to €42.4 million nationally. CONCLUSIONS: Implementation of the LMD-ACP (ACD/end-of-life care plans combined with palliative care education) programme resulted in reduced rates of hospitalisation. Despite an increase in LOS, likely reflecting more complex care needs of admitted residents, gross costs were reduced and scenario analysis projected large annual savings if these results were extrapolated to the wider LTC population in Ireland.

The possible impact of the German DRGs reimbursement system on end-of-life decision making in a surgical intensive care unit.

BACKGROUND: More than 70 % of critically ill patients die in intensive care units (ICUs) after treatment is reduced. End-of-life decision making in the ICU is a grey area that varies in practice, and there are potential economic consequences of over- and under-treatment. The aim of this study was to describe the end-of-life decisions of critically ill patients in a surgical ICU in Germany and to identify how financial incentives may influence decision making. METHODS: Data on the admission diagnosis, end-of-life decision making and cause of death were obtained for 69 critically ill patients who died in the ICU (Hospital of Bayreuth, Germany) in 2009. A cost-revenue analysis was conducted on the 46 patients who did not die within 3 days of ICU admission. Because we lacked real data on costs, our analysis was based on the average cost for each diagnosis-related group (DRG) from the Institute for the Hospital Remuneration System (InEK). Hospital revenues based on the DRG were considered. Subsequently, we compared the estimated financial impact of earlier and later decisions to withdraw or withhold futile therapy. RESULTS: In this study, we found that end-of-life decision making was poorly documented. Only 11 % of patients had a valid power of attorney and advanced directives, and therapy with presumed consent was performed in 43 % of all cases. From long-stay patients, therapy was withdrawn for 37 % of patients and withheld from 26 % of patients, and 37 % of the patients died receiving maximal therapy. Almost 72 % of DRG-related reimbursements were dependent on ventilation hours. The average total cost estimate (according to InEK) for the 46 long-stay patients was 1,201,000 . The revenues without additional remuneration were 1,358,000 , and the total estimated profit was approximately 157,000 . Only 10 cases were assumed to be non-profitable. In cases where the decision to withdraw or withhold therapy could have occurred 3 days earlier, the estimated profit shrank to 72,000 (46 % of estimated ICU profit). In situations where the decision to withdraw or withhold therapy from patients could have occurred 3 days later, the hypothetical profit rose to 217,000 (138 % of estimated ICU profit). CONCLUSION: There are still few patients with clear self-determination, and almost half of therapies are performed only according to presumed consent. The strong nonlinear dependence of DRG revenues on ventilation hours could influence ethical decision making of medical professionals. The decision-making process and appropriate therapy in the ICU setting need to be defined more clearly and better documented, focusing on the benefits to the patient while respecting patient consent.

Quality of Life and Cost of Care at the End of Life: The Role of Advance Directives.

CONTEXT: Advance directives (ADs) are expected to improve patients' end-of-life outcomes, but retrospective analyses, surrogate recall of patients' preferences, and selection bias have hampered efforts to determine ADs' effects on patient outcomes. OBJECTIVES: The aim was to examine associations among ADs, quality of life, and estimated costs of care in the week before death. METHODS: We used prospective data from interviews of 336 patients with advanced cancer and their caregivers and analyzed patient baseline interview and caregiver and provider post-mortem evaluation data from the Coping with Cancer study. Cost estimates were from the Healthcare Cost and Utilization Project Nationwide Inpatient Sample and published Medicare payment rates and cost estimates. Outcomes were quality of life (range 0-10) and estimated costs of care received in the week before death. Because patient end-of-life care preferences influence both AD completion and care use, analyses were stratified by preferences regarding heroic end-of-life measures (everything possible to remain alive). RESULTS: Most patients did not want heroic measures (76%). Do-not-resuscitate (DNR) orders were associated with higher quality of life (ß = 0.75, standard error = 0.30, P = 0.01) across the entire sample. There were no statistically significant relationships between DNR orders and outcomes among patients when we stratified by patient preference or between living wills/durable powers of attorney and outcomes in any of the patient groups. CONCLUSION: The associations between DNR orders and better quality of life in the week before death indicate that documenting preferences against resuscitation in medical orders may be beneficial to many patients.

Enduring powers of attorney: promoting attorneys' accountability as substitute decision makers.

AIM: The misuse and abuse of Enduring Powers of Attorney (EPAs) by attorneys, particularly in relation to financial decision-making, is a growing concern. This paper explores the opportunities to enhance accountability of attorneys at the time of the execution of the document in Queensland. METHOD: A four-stage multi-method design comprised a critical reference group; semi-structured interviews with 32 principals or potential principals, attorneys and witnesses; two focus groups with service providers and a state-wide survey of 76 principals, attorneys and witnesses. RESULTS: Across all methods and user groups, understanding the role and obligations of the attorney in an EPA was consistently identified as problematic. CONCLUSIONS: Promoting accountability and understanding can be addressed by greater attention to the role of the attorney in the forms/ guidelines and in the structure and witnessing of the forms, increased direction about record keeping and access to appropriate advice and support.

Advance directives in the context of end-of-life palliative care.

PURPOSE OF REVIEW: To review the definition of advanced directive, understand the implications for the patient, family and healthcare team, and address the obstacles involved in the implementation. RECENT FINDINGS: Advanced directives propose a model of healthcare based on patient preferences. Although there is sufficient evidence related to their usefulness, various factors are known to affect the use of advanced directives. Therefore, rules need to be established in order to optimize the implementation process. SUMMARY: An advanced directive is a legal document based on the principle of autonomy that expresses the desire of the patient in relation to different medical treatments when the patient is unable to make those decisions. The advanced directives are represented in three formats: Living Will, Appointment of a Healthcare Proxy and Legal Status of Preferences. The uses of advanced directives have an impact not only on the patients and their families, but also on the healthcare team. Despite their utility being well known, there are several general barriers that affect implementation, as well as factors related to characteristics of each study population.

Regional variation in the association between advance directives and end-of-life Medicare expenditures.

CONTEXT: It is unclear if advance directives (living wills) are associated with end-of-life expenditures and treatments. OBJECTIVE: To examine regional variation in the associations between treatment-limiting advance directive use, end-of-life Medicare expenditures, and use of palliative and intensive treatments. DESIGN, SETTING, AND PATIENTS: Prospectively collected survey data from the Health and Retirement Study for 3302 Medicare beneficiaries who died between 1998 and 2007 linked to Medicare claims and the National Death Index. Multivariable regression models examined associations between advance directives, end-of-life Medicare expenditures, and treatments by level of Medicare spending in the decedent's hospital referral region. MAIN OUTCOME MEASURES: Medicare expenditures, life-sustaining treatments, hospice care, and in-hospital death over the last 6 months of life. RESULTS: Advance directives specifying limits in care were associated with lower spending in hospital referral regions with high average levels of end-of-life expenditures (-$5585 per decedent; 95% CI, -$10,903 to -$267), but there was no difference in spending in hospital referral regions with low or medium levels of end-of-life expenditures. Directives were associated with lower adjusted probabilities of in-hospital death in high- and medium-spending regions (-9.8%; 95% CI, -16% to -3% in high-spending regions; -5.3%; 95% CI, -10% to -0.4% in medium-spending regions). Advance directives were associated with higher adjusted probabilities of hospice use in high- and medium-spending regions (17%; 95% CI, 11% to 23% in high-spending regions, 11%; 95% CI, 6% to 16% in medium-spending regions), but not in low-spending regions. CONCLUSION: Advance directives specifying limitations in end-of-life care were associated with significantly lower levels of Medicare spending, lower likelihood of in-hospital death, and higher use of hospice care in regions characterized by higher levels of end-of-life spending.

End-of-life hospital costs in cancer patients: do advance directives or routes of hospital admission make a difference?

OBJECTIVE: End-of-life cancer care is costly. The current study explored whether advance directives or route of hospital admission reduced cancer patients' terminal hospitalization costs. METHODS: This single-institution study focused on solid tumor patients who died on an inpatient oncology service in 2008 and 2009. Patients' total costs were compared based on advance directives and route of hospitalization. RESULTS: Among 120 patients, all except 4 had an incurable malignancy. Forty-six (38%) had an advance directive. Sixteen (13%) were admitted after an oncology clinic visit and 6 (5%) from hospice; others were admitted via other routes, most commonly from the emergency department. The median total cost for hospitalization (range) per patient was USD 12,962 (1,244-138,877). Patients with advance directives had no statistically significant difference in cost (p = 0.30), even after adjusting for age and time in the hospital. Those admitted after an oncology clinic or from hospice also had no difference in cost compared to those admitted via another route. Use of cardiopulmonary resuscitation, intensive care unit monitoring and intubation were similar between all compared groups. CONCLUSION: Advance directives and route of admission do not appear to impact the cost of terminal hospitalization for cancer patients.

Advances in palliative medicine and end-of-life care.

Palliative care improves the quality and cost-effectiveness of adult and pediatric patient care, and it decreases unwanted hospitalizations and aggressive care at the end of life. National palliative care quality standards and preferred practices can be used for benchmarking by institutions, health care systems, and accrediting bodies. Pain and symptom management and the management of delirium for patients is now possible for the vast majority of patients, even those with advanced disease. However, because of shortages of specialists providing "tertiary" palliative care, significant improvements are needed in generalist-level palliative care among oncologists, intensivists, and specialists caring for patients with advanced cardiac, pulmonary, renal, and hepatic diseases. POLST (Physician Orders for Life-Sustaining Treatment) forms are a major advance in end-of-life care. They enable patients' advance directives to be valid wherever they are cared for (home, hospital, or nursing facility).

Readability of state-sponsored advance directive forms in the United States: a cross sectional study.

BACKGROUND: State governments provide preprinted advance directive forms to the general public. However, many adults in the United States (US) lack the skills necessary to read and comprehend health care-related materials. In this study, we sought to determine the readability of state government-sponsored advance directive forms. METHODS: A cross sectional study design was used. The readability of advance directive forms available online from all 50 US states and the District of Columbia was determined using 6 validated readability scales. RESULTS: Overall, 62 advance directive forms were obtained. For 47 states, forms were available by way of government-sponsored Web sites. The average (SD) readability (with the Flesch-Kincaid score) of all forms was grade level 11.9 (2.6). Similar results were obtained with the other readability scales. No form had a readability score at the 5th grade level or lower, the level recommended by the National Work Group on Literacy and Health. The readability of the forms exceeded this level by an average of 6.9 grade levels (95% confidence interval, 6.3-7.6; P < .001). Only 5 of the forms had a readability score at 8th grade level or lower, the average reading skill level of US adults. The readability of the forms exceeded this level by an average of 3.9 grade levels (95% confidence interval, 3.3-4.6; P < .001). CONCLUSIONS: The readability of US state government-sponsored advance directive forms exceeds the readability level recommended by the National Work Group on Literacy and Health and the average reading skill level of most US adults. Such forms may inhibit advance care planning and therefore patient autonomy.