Advance care planning for patients with advanced neurology diseases

Cheung, Ka-Chi; Lau, Vikki Wai-Kee; Un, Ka-Chun; Wong, Man-Sheung; Chan, Kwok Ying

doi:10.21037/apm.2017.09.10

Cited by 18 publications

(22 citation statements)

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“…In a retrospective chart review, Cheung et al (2017) [ 83 ] investigated the EOL care communication, preferences and documentation among patients with end-stage neurological disorders (stroke, myopathies, motor neuron disease, MS, parkinsonism). Results showed that most patients would decide for EOL issues during their first consultations.…”

Section: Resultsmentioning

confidence: 99%

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Giordano

Panfilis

Perin

et al. 2022

IJERPH

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Advance care planning (ACP) is increasingly acknowledged as a key step to enable patients to define their goals/preferences for future medical care, together with their carers and health professionals. We aimed to map the evidence on ACP in neurodegenerative disorders. We conducted a scoping review by searching PubMed (inception-December 28, 2020) in addition to trial, review, and dissertation registers. From 9367 records, we included 53 studies, mostly conducted in Europe (45%) and US-Canada (41%), within the last five years. Twenty-six percent of studies were qualitative, followed by observational (21%), reviews (19%), randomized controlled trials (RCTs, 19%), quasi-experimental (11%), and mixed-methods (4%). Two-thirds of studies addressed dementia, followed by amyotrophic lateral sclerosis (13%), and brain tumors (9%). The RCT interventions (all in dementia) consisted of educational programs, facilitated discussions, or videos for patients and/or carers. In conclusion, more research is needed to investigate barriers and facilitators of ACP uptake, as well as to develop/test interventions in almost all the neurodegenerative disorders. A common set of outcome measures targeting each discrete ACP behavior, and validated across the different diseases and cultures is also needed.

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Section: Resultsmentioning

confidence: 99%

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Giordano

Panfilis

Perin

et al. 2022

IJERPH

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“…44 , 90 Therefore, 16 publications mention different tools for ACP offered to PALS (including ADs or other documents, such as a preferred priorities for care document, end-of-life care plan or letter for future care). 14 , 42 , 60 , 61 , 64 , 70 , 73 , 78 , 87 , 93 , 107 , 109 , 110 , 121 – 123 However, the guidance to conclude such a document is sometimes more 61 , 87 , 103 , 115 and sometimes less sufficient. 47 Prevalence rates for completed documents vary according to the time of data collection and national context.…”

Section: Resultsmentioning

confidence: 99%

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

et al. 2022

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Amyotrophic lateral sclerosis (ALS) leads to death on average 2–4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this review are to provide an insight into the following questions: (1) How do people with amyotrophic lateral sclerosis (PALS), their families and health care professionals (HCPs) communicate about life-sustaining and life-shortening options? (2) What are the challenges for all involved in decision making and communication about this topic? To answer these questions, we searched eight databases for publications in English and German on end-of-life issues of PALS. We included texts published between 2008 and 2018, and updated our search to May 2020. Sources were analysed in MAXQDA using deductively and inductively generated codes. After the final analysis, 123 full texts were included in this review. We identified a wide range of communicative challenges and six different and, in part, opposite communication patterns: avoiding or delaying communication on end-of-life issues, openly considering dying and actively seeking assistance, ignoring or disregarding patients’ wishes, discussing and respecting the patients’ wishes, engaging in advance care planning and avoiding or delaying advance care planning. The literature reveals a very heterogeneous response to end-of-life issues in ALS, despite several good-practice suggestions, examples and guidelines. We derive a strong need for harmonization and quality assurance concerning communication with PALS. Avoiding or delaying communication, decision making and planning, as well as ignoring or disregarding the patient’s will by HCP can be judged as a violation of the ethical principles of autonomy and non-maleficence.

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“…All patients in the ACP had do-not-attemptcardiopulmonary-resuscitation (DNACPR) order. Mean age (SD) of ACP group and non-ACP groups were 58.8 [13] and 60.4 [16] years old respectively, and approximately 46-47% were men in both groups. The median of the number of sessions to achieve ACP was 4.3 (range, 2-7 sessions).…”

Section: Patient Characteristicsmentioning

confidence: 99%

“…Due to the socio-cultural differences, the implementation of ACP remains difficult in the EOL care for local Chinese patients with advanced medical illness (12,13). In this context, there is social taboo to discuss ACP in elderly Chinese patients.…”

Section: Introductionmentioning

confidence: 99%

Impact of structured advance care planning program on patients’ wish items and healthcare utilization

Chan¹,

Chiu²,

Yap³

et al. 2021

Ann Palliat Med

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Background: Structured advance care planning (ACP) program is an important service in the end-of-life care for patients with advanced medical illness. We pioneered a structured and coordinated ACP program for patients with advanced malignancies and end-stage organ failure in Hong Kong. This study investigated the impact of a structured ACP program on the concordance rate for patients' final wishes, patient/family satisfaction, and the number of acute admissions (AA) and length of stay (LOS) in hospital.Methods: Patients with advanced malignancy or end-stage organ failure who were able to complete ACP forms during the current admission to medical units were recruited. Patients who could not complete ACP forms or <18 years of age were excluded. The ACP program comprised the following components: (I) baseline education (workshop/role play) in ACP sessions for linked nurses of different medical units; (II) structured ACP discussions with recruited patients and their proxies during admission, after any change in clinical status, and also at monthly intervals; (III) formal structured review of patients' goals at regular team meetings; (IV) "flagging" of advance directive (AD) in hospital computer system and (V) feedback to linked nurse on the congruence of care. Mentally competent patients who did not receive ACP and matched for disease and demographics were selected as controls in a 1:2.5 ratio.Results: Two hundred forty-three patients were included for analysis between August 2016 and July 2017, of which 69 patients joined the ACP program and 174 of them did not. Two hundred and one patients (83%) had advanced cancer. All had done do-not-attempt-cardiopulmonary-resuscitation (DNACPR) order in the ACP group. The concordance rates for patients' wishes on quality of life, end-of-life and funeral arrangements were 95%, 100% and 100% respectively. Over 70% of patients and their families (N=10) showed satisfaction with the program. The ACP group also had lower mean AA and shorter LOS (0.78±0.23 vs. 1.2±0.8 episode/patient, 4.6±1.7 vs. 7.5±2.5 days, P=0.037 and P=0.023 respectively) in the last 3 months of life compared with the non-ACP group.Conclusions: This ACP program achieved high concordance rate for patients' wish items and reduced healthcare utilization.

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Advance care planning for patients with advanced neurology diseases

Cited by 18 publications

References 0 publications

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

Impact of structured advance care planning program on patients’ wish items and healthcare utilization

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