Advance care planningAdvance care planning for patients with COPD: Past, present and future
Introduction
Decisions about end-of-life care often occur at a time when patients lack the capacity to make these decisions [1], [2]. Therefore, advance directives were advanced in the 1990s as an important tool for improving end-of-life care [2], [3], [4]. Early studies of advance directives proved to be disappointing and many in the healthcare community grew disillusioned with their potential [5]. However, advance directives, within the context of advance care planning, has again received increasing attention in the last few years [1].
In the previous decade, advance care planning was seen as the process by which persons can indicate the type of treatment they would want to receive in the future if they were no longer able to participate in the decision-making process; it was often seen as synonymous with the completion of advance directives [6]. However, more recently advance care planning is seen as a process of communication between patients and professional caregivers that includes, but is not limited to, the completion of advance directives [6]. Communication about end-of-life care is an essential part of advance care planning. Because of the trajectory of illness among patients with Chronic Obstructive Pulmonary Disease (COPD), which often includes gradual deterioration in functional status interrupted by sudden and potentially life-threatening exacerbations [7], advance care planning may be particularly important for these patients [8].
The aim of the present narrative review is to discuss the importance of advance care planning for patients with COPD, the current status of advance care planning, including patient–physician communication about end-of-life care, and to provide directions for improvement of advance care planning in COPD.
Section snippets
Initially disappointing results
Although advance directives were assumed to be valuable prior to studies examining their effectiveness, early studies of their effectiveness for improving patient outcomes at the end of life were disappointing [9], [10]. In a randomized trial of an intervention in which advance directives were offered and then entered into the medical record for patients with life-limiting illnesses, the well-being, health status, and medical treatments were comparable for patients in the intervention and
Why is advance care planning important for patients with COPD?
Advance care planning, including early patient–physician communication about end-of-life care, may be particularly important for patients with COPD [8]. COPD is a major cause of mortality worldwide and the only leading cause for which mortality is rising [24], [25]. The disease trajectory in COPD is typically marked by a gradual decline in health status and punctuated by acute exacerbations that are associated with an increased risk of dying [7]. The mortality within one year after
What kind of advance care planning do patients with COPD and their families want?
Communication has been identified as one of the most important skills provided by clinicians who deliver end-of-life care to patients with COPD [34]. Patients with COPD report wanting information about their diagnosis and expected disease process, treatment, prognosis, what dying might be like, and advance care planning [35]. Despite this, a recent qualitative study has shown that patients with advanced COPD demonstrate a poor understanding of their disease [36]. Most patients were unaware of
What is the current status of advance care planning?
Despite patients’ and families’ requests for increased and improved advance care planning, data from both patients and their physicians suggest that advance care planning is uncommon and often poorly done. Only 19% of the patients entering pulmonary rehabilitation reported having discussed advance directives with their clinician and only 14% thought that their clinician understood their wishes for end-of-life care [42]. Nevertheless, 94% of these patients had opinions about intubation and 99%
How should clinicians communicate about advance care planning with patients with COPD and their families?
In order to identify areas for interventions to improve communication about end-of-life care, a previous study identified barriers and facilitators to patient–clinician communication about end-of-life care in patients with COPD [43]. Seventy-five percent of the patients reported “I would rather concentrate on staying alive than talk about death” [43]. Despite the need for conversations about end-of-life care, most patients will not initiate these discussions and will wait for their clinician to
Future directions for research
Clinicians caring for patients with COPD will need training in order to implement these components of good advance care planning. Previous studies have shown that a communication skills-building workshop for clinicians working in oncology was successful in improving skills for communication about end-of-life care [58], [59]. Therefore, a target for future studies may be to develop interventions to improve the skills of clinicians to communicate about end-of-life care with patients with COPD and
Conclusions and practice implications
Advance care planning, including communication about end-of-life care, is of major importance for patients with COPD and their loved ones. Because of the uncertain prognosis and the frequent occurrence of unexpected declines in health status in COPD, advance care planning must be an important part of regular care for patients with advanced COPD. Unfortunately, advance care planning occurs infrequently and the quality of patient–physician communication about end-of-life care is poor for patients
Acknowledgements
This review was part of an international research fellowship supported by CIRO+, centre of expertise for chronic organ failure, Horn, The Netherlands.
DJAJ is a part time PhD student, who is financially supported by Proteion Thuis, Horn, The Netherlands; Grant 3.4.06.082 of the Netherlands Asthma Foundation, Leusden, The Netherlands; Stichting Wetenschapsbevordering Verpleeghuiszorg (SWBV), Utrecht, The Netherlands. No funding source had any role in the writing of this manuscript or in the
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