Affiliations: New Hyde Park, NY
Dr. Weiner is Assistant Professor of Psychiatry, Albert Einstein College of Medicine, a Faculty Scholar of the Project on Death in America, and Director of the Program in the Patient-Doctor Relationship, Departments of Medicine and Psychiatry, Long Island Jewish Medical Center. Dr. Efferen is Associate Professor of Clinical Medicine, Division of Pulmonary and Critical Care Medicine, Department of Medicine, Albert Einstein College of Medicine and Associate Chair, Department of Medicine, Long Island Jewish Medical Center.
Correspondence to: Linda S. Efferen, MD, FCCP, Associate Chair, Department of Medicine, North Shore–Long Island Jewish Health System, Long Island Jewish Medical Center, Department of Medicine, 270–05 76th Ave, New Hyde Park, NY 11040; e-mail firstname.lastname@example.org
The aim is to cure and, when impossible, to prevent decline. These are measures of our success. As decline transforms into dying, harsh and inexorable, we may become discomfited. This exposes a critical deficit—the failure to see death as an opportunity to use the patient/physician relationship to improve the quality of the patient’s remaining life and the quality of the dying experience, long remembered by the survivors after the patient is gone. Instead, we commonly tiptoe away.
Despite consistent and concerted efforts, the quality of care at the end of life still needs improvement.1 To confirm this, one only needs to review a sample of in-hospital deaths. While retrospective reviews carry bias, they also illustrate missed opportunities to discuss goals of care and preferences in advance of an acute event.
Older paintings have depicted physicians as healers attending a bedside vigil, sharing patient suffering and thus easing it (The Doctor, Sir Luke Fildes 1843–1927). The study by Knauft et al in this issue of CHEST (see page 2188) provides an important empiric foundation, which may eventually enable more of us to walk back into the room and sit down with the dying patient.
COPD ranks as the fourth leading cause of death in the United States2 and is recognized as a major public health problem. Despite this, palliative care is not well researched in COPD. Indeed, a cursory MEDLINE search from 1966 to 2005 linking the key words “palliative care” and “COPD” revealed only 59 articles, as opposed to 377 articles and 15,195 articles linking palliative care with key words “HIV” and “cancer,” respectively.
Why does such research in COPD lag behind? It may be that the nature of the disease, slow progression punctuated by acute exacerbations, obfuscates the point at which the illness should be considered potentially “terminal.” Hospitalization for acute respiratory failure predicts a guarded long-term prognosis for the COPD patient. However, there is no method to identify which patient will benefit from life support at the time of hospital admission.
The Global Initiative for Chronic Obstructive Lung Disease (GOLD) workshop summary is a comprehensive document with a focus on management of COPD.3It provides a foundation on which we may be able to build momentum to prompt health-care providers, patients, and their families to open a dialogue regarding goals of therapy near the end of life. Unfortunately, it falls short of providing that prompt. It does highlight that stage III COPD is associated with impairment in quality of life, and with exacerbations sometimes leading to death. It is known that medications for COPD do not modify the long-term decline in lung function. Prior research4supporting patient education as effective in initiating discussions and understanding of advance directives and end-of-life issues was also noted. However, the GOLD summary failed to include within its four components of COPD management anything more than a passing allusion to the topic of end-of-life care communication or advanced care planning. In contrast, the American Thoracic Society (ATS)/European Respiratory Society (ERS) COPD guideline is a Web-based resource that contains an informative section on end-of-life care (pages 198 to 206).5 Unfortunately, of the two documents, the GOLD summary has been widely hailed, quoted, and read, whereas the segment on ethical and palliative care issues in the ATS/ERS guideline is relatively unknown.
The article by Knauft et al has identified barriers and facilitators to end-of-life care communication specifically in oxygen-dependent COPD patients. Despite the limitations of the study and unknown generalizability, which are acknowledged and well discussed by the authors, it highlights a topic that is difficult to define and quantitate for a clinical audience who needs stronger support in order to consider how they may put into operation the central importance of communication with the dying patient and the family.
Some of the findings may appear initially as intuitively obvious. What serves to facilitate discussions from the physicians’ perspective include a good, preexisting relationship with the patient, a significant clinical experience with lung disease, and the recognition of the severity and chronicity of the illness. From the patients’ perspective, trust and confidence in one’s doctor and having had the experience of death among family or friends were identified as facilitators. With such basic requirements as these, it would seem likely that an overwhelming majority of patients should be able to report having a discussion; however, only 32% of patients in this study of oxygen-dependent COPD patients reported discussing the type of care they would want with their physicians if they were too sick to speak for themselves.
What are the barriers? Of concern, 64% of patients identified a barrier to communication about end-of-life care as their uncertainty over which doctor would take care of them if they got very sick. This speaks to the patient’s perception about fragmentation of care and a likely lack of confidence that communication of their wishes will get to the right person at the appropriate time. Some barriers identified by physicians included concerns about taking away hope, time constraints, and a perception that the patient was not yet ready to have a discussion.
Of interest, the authors report that while only 32% of patients reported discussing with their physicians what care they would want if they were too sick to speak for themselves, a majority of patients believed that their doctor would know what kind of treatments the patient would want. One can speculate that some patients may wish to relinquish their autonomy and trust in their doctor’s judgment. However, a patient’s desire for control can change over the course of an illness.
End-of-life care discussions appear to be valued by patients, yet occur in only a minority of patients. Policies in place for over a decade have attempted to increase advanced care discussions and planning.6 While well intentioned, such initiatives have had little impact on the quality of care or the occurrence of end-of-life goals of care discussions.5
It is generally presumed that a sustained education effort, directed at both clinicians and the community, will be required to increase the occurrence of effective goals of care discussions. The first step is to recognize that advance care planning and goals of care discussions are very important. Secondly, professionals have specific emotional, cognitive, and skill barriers to shared decision-making discussions concerning end-of-life care that require amelioration.7 Clinicians generally lack training in understanding how patients make decisions and what aids and obstructs the process. The work of Knauft et al is the latest contribution of J. Randall Curtis’ research group to develop informed communication interventions with the terminally ill. Communication recommendations in the palliative-care literature are currently guided primarily by anecdotal experience and clinical wisdom. Future practice must be better grounded in empiric evidence and theory.1,8
The authors discuss that because only 2 of 15 potential barriers were endorsed by > 50% of patients, communication interventions to overcome these barriers may need to target the specific issues that are relevant to individual patient-physician dyads. While this is always true (each patient is unique), we differ with the authors slightly in that we believe a theory-based approach to communication will give us general guidance for the vast majority of patients. Such approaches may be grounded in cognitive behavioral theory, cognitive science, or decision theory.8
This all leaves open the question, who can or should provide these communication interventions? Given the significant time constraints endorsed by the majority of physicians in this study, the palliative medicine consult team appears to be a logical place to look to for solutions for patients and health-care providers. Perhaps in an ideal world all health-care providers would possess the requisite skills for effective and meaningful advanced clinical decision making at the end of life. These skills, however, are specialized. Presuming that we all may not be equally adept or even interested in dealing with end-of-life concerns, we must still recognize when that realm of care is warranted. Whether we opt to provide that care ourselves or reach out to others should be rooted in what is best for the patient and family.
The article by Knauft et al supplies us with no easy answers. However, it is another step forward toward achieving the goal of improved end-of-life care communication. Along with the authors, we hope that their findings may help stimulate additional work to improve the quality of care at the end of life for our patients and their families.
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