Dataset Information

Advance care planning in progressive neurological diseases: lessons from ALS.

ABSTRACT:

Background

There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. Advance care planning (ACP) is an integral part of this approach. As a systematically organized and ongoing communication process about patients' values, goals and preferences regarding medical care during serious and chronic illness, ACP aims to involve patients in decision-making before they become cognitively and communicatively incapable. However, it remains underutilized in daily neurological practice except for speciality clinics such as ALS centers. Our aim was to study ACP in the tertiary ALS center Amsterdam and to investigate patients' reflections on it. Subsequently we used this knowledge to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases.

Methods

Non-participating observations of all appointments of patients with amyotrophic lateral sclerosis (ALS) or progressive muscular atrophy (PMA) with the treating physician, in various stages of disease, during 6 consecutive months, followed by single in-depth interviews, and an inductive analysis.

Results

Twenty-eight Dutch patients participated, varying in age, gender, disease onset and severity of physical decline. ACP started directly when the diagnosis was given, by means of a general outlook on the future with progressive disability and immediate introduction to a customized multidisciplinary team. During follow-up ACP was realized by regular appointments in which monitoring of the patient's status and clear communication strategies formed the basis of tailor-made discussions on treatment options. Patients accepted this policy as careful professional guidance.

Conclusions

ACP is a professional communication process throughout the whole course of progressive disease. It is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, we argue that such a well-structured approach would also enhance the quality of care and life of patients with other chronic progressive neurological diseases.

SUBMITTER: Seeber AA

PROVIDER: S-EPMC6567602 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Advance care planning in progressive neurological diseases: lessons from ALS.

Seeber Antje A AA Pols A Jeannette AJ Hijdra Albert A Grupstra Hepke F HF Willems Dick L DL de Visser Marianne M

BMC palliative care 20190613 1

<h4>Background</h4>There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. Advance care planning (ACP) is an integral part of this approach. As a systematically organized and ongoing communication process about patients' values, goals and preferences regarding medical care during serious and chronic illness, ACP aims to involve patients in decision-making before they become cognitively and communicatively incapable. Howev ...[more]

PMID: 31196046

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Project description:Background/objectiveAdvance care planning (ACP) is associated with improved patient and caregiver outcomes, but is underutilized. To encourage ACP, the Centers for Medicare & Medicaid Services implemented specific ACP visit reimbursement codes in 2016. To better understand the utilization of these ACP reimbursement codes, we explored regional variation in billed ACP visits.DesignWe performed a retrospective cross-sectional analysis using a randomly sampled 5% cohort of Medicare fee-for-service (FFS) beneficiaries' claims files from 2017. Region was defined by hospital referral region.SettingNational Medicare FFS.ParticipantsA total of 1.3 million Medicare beneficiaries aged 65 years and older.MeasurementReceipt of billed ACP service, identified through Current Procedural Terminology code 99497 or 99498. Proportion of beneficiaries who received billed ACP service(s) by region was calculated. We fit a multilevel logistic regression model with a random regional intercept to determine the variation in billed ACP visits attributable to the region after accounting for patient (demographics, comorbidities, and medical care utilization) and regional factors (hospital size, emergency department visits, hospice utilization, and costs).ResultsThe study population included about 1.3 million beneficiaries, of which 32,137 (2.4%) had at least one billed ACP visit in 2017. There was substantial regional variation in the percentage of beneficiaries with billed ACP visits: lowest quintile region, less than 0.83%; subsequent regions, less than 1.6%, less than 2.4%, less than 3.3% to less than 8.4% in the highest quintile regions. A total of 15.4% of the variance in whether an older adult had a billed ACP visit was explained by the region. Although numerous regional factors were associated with billed ACP visits, none were strong predictors.ConclusionIn 2017, we found wide regional variation in the use of billed ACP visits, although use overall was low in all regions. Increasing the understanding of the drivers and the effects of billed ACP visits could inform strategies for increasing ACP.

Project description:Advance planning for end-of-life care has gained acceptance, but actual end-of-life care is often incongruent with patients' previously stated goals. We assessed the flow of advance care planning information from patients to medical records in a community sample of older adults to better understand why advance care planning is not more successful.Our study used structured interview and medical record data from community-dwelling older patients in two previous studies: Assessing Care of Vulnerable Elders (ACOVE)-1 (245 patients age > or = 65 years and screened for high risk of death/functional decline in 1998-1999) and ACOVE-2 (566 patients age > or = 75 who screened positive for falls/mobility disorders, incontinence, and/or dementia in 2002-2003). We compared interview data on patients' preferences, advance directives, and surrogate decision-makers with findings from the medical record.In ACOVE-1, 38% of surveyed patients had thought about limiting the aggressiveness of medical care; 24% of surveyed patients stated that they had spoken to their doctor about this. The vast majority of patients (88%-93%) preferred to die rather than remain permanently in a coma, on a ventilator, or tube fed. Regardless of patients' specific preferences, 15%-22% of patients had preference information in their medical record. Among patients who reported that they had completed an advance directive and had given it to their health-care provider, 15% (ACOVE-1) and 47% (ACOVE-2) had advance directive information in the medical record. Among patients who had not completed an advance directive but had given surrogate decision-maker information to their provider, 0% (ACOVE-1) and 16% (ACOVE-2) had documentation of a surrogate decision-maker in the medical record.Community-dwelling elders' preferences for end-of-life care are not consistent with documentation in their medical records. Electronic health records and standardized data collection for end-of-life care could begin to ameliorate this problem.

Dataset Information

Advance care planning in progressive neurological diseases: lessons from ALS.

Background

Methods

Results

Conclusions

Publications

Advance care planning in progressive neurological diseases: lessons from ALS.

Similar Datasets

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