A new program developed by researchers at Pennsylvania State College of Medicine and Pennsylvania State University may make it easier for patients with moderate/severe chronic obstructive pulmonary disease (COPD) to make critical decisions regarding their care as their disease worsens. The computer-based decision aid (CDA) is designed to educate patients about planning for end-of-life decisions without diminishing hope, according to the researchers.
The results of the study will be presented at the ATS 2011 International Conference in Denver.
According to lead author and third-year medical student Joshua Hozella, patients found the CDA was highly accurate at reflecting their wishes for end-of-life medical care and reported high levels of satisfaction using the program.
"Despite the high mortality associated with COPD, few patients either engage in end-of-life planning or create an 'advance directive,' the document used by health professionals when patients cannot speak for themselves," said Mr. Hozella. "To overcome various barriers associated with end-of-life planning, a research team led by Drs. Michael Green and Benjamin Levi at Pennsylvania State developed a computer-based decision aid that both helps patients work through key issues in advance care planning and generates an advance directive based on their responses."
To conduct their study, Mr. Hozella and fellow researcher Rebecca Bascom, MD, enrolled 20 patients with moderate/severe COPD. Patients completed the CDA independently with in-room technical support available as needed. After completing the activity, patients were asked to evaluate the program with regard to how well the program reflected their desires for end-of-life care, how satisfied they were with the decision aid and how their level of hope changed after using the program.
Results of the study indicated patient satisfaction with the CDA was high. Mean satisfaction level on a scale of 1 to 10, with 1 being the lowest, was 8.6. Users also rated the advance directive as highly accurate at reflecting their wishes, with a mean rating of 8.5. Additionally, patients who completed the CDA reported an increased awareness of advance care planning issues and no decrease in their level of hope.
Mr. Hozella said the findings were consistent with what Drs. Green and Levi have found in other studies with patients who have advanced cancer, heart disease and amyotrophic lateral sclerosis (Lou Gehrig's disease).
"Some physicians resist advance care planning out of concern that addressing these issues will rob patients of much-needed hope, Mr. Hozella said. "There is also concern that advance directive documents are poor representations of patients' values and goals, and hence are often not useful for dealing with complex medical decisions that may arise during end-of-life care.
"We've found that a computer-based decision aid can help patients learn about and work through key issues in end-of-life planning, generate an advance directive document that accurately reflects their wishes for end-of-life care, and do so in a way that does not diminish their sense of hope," he said. "This decision aid was designed to address the advance care planning needs of patients, regardless of their medical condition.
"The present study shows that patients with COPD are among those who will benefit from the use of this CDA," he added. "These findings should encourage clinicians, patients and patients' families to use our computer-based decision aid to engage in effective advance care planning."
As a next step, the research team has proposed a study that would evaluate whether use of the CDA can help decrease the burden of decision-making for family caregivers who are often required to make surrogate decisions when patients can no longer speak for themselves.