Advance care planning in progressive neurological diseases: lessons from ALS

被引:43
|
作者
Seeber, Antje A. [1 ,2 ]
Pols, A. Jeannette [2 ]
Hijdra, Albert [1 ]
Grupstra, Hepke F. [3 ]
Willems, Dick L. [2 ]
de Visser, Marianne [1 ]
机构
[1] Univ Amsterdam, Acad Med Ctr, Amsterdam Univ Med Ctr, Dept Neurol, POB 22660, NL-1100 DD Amsterdam, Netherlands
[2] Univ Amsterdam, Acad Med Ctr, Amsterdam Univ Med Ctr, Sect Med Eth,Dept Gen Practice, POB 22660, Amsterdam, Netherlands
[3] Univ Amsterdam, Acad Med Ctr, Amsterdam Univ Med Ctr, Dept Rehabil, POB 22660, Amsterdam, Netherlands
关键词
Advance care planning; Chronic progressive neurological disease; Supportive and palliative care; Quality of life; AMYOTROPHIC-LATERAL-SCLEROSIS; END-OF-LIFE; MOTOR-NEURON DISEASE; HIGH-GRADE GLIOMA; BAD-NEWS SKILLS; PALLIATIVE CARE; MULTIPLE-SCLEROSIS; DECISION-MAKING; PARKINSONS-DISEASE; COMMUNICATION;
D O I
10.1186/s12904-019-0433-6
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
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.
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页数:10
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