An Emergency Room (ER) can be a chaotic and frightening environment for anyone – but even more so if you are already struggling to breathe and don’t understand what’s happening to you. At the Queen Elizabeth Health Sciences Centre in Halifax, a new program is helping patients with advanced Chronic Obstructive Pulmonary Disease (COPD) manage their illness and minimize dependence on hospital-based services.
Cathy Simpson is a spiritual care practitioner and member of a team that developed a program to help support COPD patients so that they feel more supported, able to contribute to their treatment plan, manage their symptoms and thus visit the ER less frequently. The program is called INSPIRED, which is short for Implementing a Novel and Supportive Program of Individualized Care for Patients and Families living with Respiratory Disease.
COPD is often a very physically, socially, and emotionally isolating illness, due to the primary symptom of worsening breathlessness. Patients and families may gradually become cut off from friends, family, and even the healthcare system if symptoms worsen enough. Despite the progressive nature of the illness, clinicians seldom talk with patients about where the disease is headed for fear of eroding their hope. The INSPIRED program provides an opportunity for patients and families to break this silence. The team has found that most people appreciate this as a chance to share their stories, talk about their concerns, fears, hopes, and expectations as prelude to considering their goals and values related to care through to the end of life.
As part of the project, Respiratory Therapists visit a patient at home to teach them how to better manage their illness and avoid unnecessary trips to the ER. The training they receive helps them to recognize and deal with symptoms proactively, before a hospital visit is required. As a result, in the first 12 months both ER visits and hospital admissions have been reduced by more than 50 percent for those enrolled in the program.
Because of a gap in care identified in previous research Simpson also visits patients to provide psychosocial assessment and support. Since COPD cannot be cured, she includes Advance Care Planning as part of her conversations. “We offer this education in a form that they can understand and makes sense to them,” she says. As a result, many of the patients in the program develop Personal Directives that describe their values and end-of-life care goals and preferences and name a delegate decision-maker, which is also an important aspect of the discussion.
In analyzing the outcomes of the INSPIRED pilot program, the team found that many patients have less anxiety. They are more confident managing their symptoms and willing to discuss their goals for care, including Advance Care Planning. “We often find these individuals start out quite angry about the lack of communication and support, but that changes as they enter the program,” she says. “They really appreciate knowing that the team cares for them, someone is listening to what matters to them and that they can be more in control of their own health if they choose.”
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