Abstract
BackgroundThere 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.MethodsNon-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.ResultsTwenty-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.ConclusionsACP 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.
Highlights
There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases
They are associated with prolonged survival and/or improved health-related quality of life and recommended to be offered to patients with Motor neuron disease (MND), in a timely manner [4, 30, 31]
Setting In the tertiary amyotrophic lateral sclerosis (ALS) center of the Academic Medical Center of Amsterdam (AMC) the bad news is broken in a two-tiered appointment: a neurologist specialised in motor neuron diseases (MNDs) delivers the bad news and discusses the details of the diagnosis and its implications during a follow-up visit 2 weeks later [22]
Summary
There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. 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 It remains underutilized in daily neurological practice except for speciality clinics such as ALS centers. Chronic progressive neurological diseases (CPNDs) are associated with increasing disability and shortened life expectancy [1] Patients with conditions such as amyotrophic lateral sclerosis (ALS), high grade glioma (HGG), multiple sclerosis (MS), Parkinson’s disease (PD) and other movement disorders, post-stroke status with disability, and dementia syndromes share a host of physical, ACP is underutilized in both non-neurological and neurological diseases [3, 10,11,12,13]. They are associated with prolonged survival and/or improved health-related quality of life and recommended to be offered to patients with MND, in a timely manner [4, 30, 31]
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