Abstract
Dear Editor:
Caregivers who assume this role for a dying family member in the home must carry the significant responsibility of patient symptom management, including appropriate assessment and treatment. This can be burdensome, as the end-of-life experience of each patient and the clinical knowledge of each family caregiver are subjective to the home. Sadly, this around-the-clock duty is often assumed with little or no preparation, potentially leading to caregiver strain and negative patient and caregiver outcomes. 1
An intervention bundle for dyspnea assessment and management was tested among family caregivers and patients enrolled in home hospice. This standardized bundle consisted of caregiver training by the hospice case manager to use a shortness of breath scale, 2 supported by an investigator-developed training digital video disk (DVD) that illustrated the use of the assessment scale, upright positioning, and use of a fan. The intent of this bundle was to assist family caregivers in the event of escalating dyspnea and patient inability to self-report as typifies the last weeks of life. 3 Four weeks after patient death, semistructured interviews were conducted to assess this pilot intervention.
We enrolled 10 patients at risk for developing dyspnea of whom 7 completed the study. Patients had one or more of chronic obstructive pulmonary disease (COPD), lung cancer, or heart failure. Caregiver–patient dyads were enrolled for an average of 4.5 weeks before patient death (range 3 days to 14 weeks). We measured patient respiratory distress twice weekly and caregiver strain, anxiety, and depression once weekly. We achieved 100% participation with all study measures and postdeath interviews. All family caregivers recalled the training and used at least one part of the bundle in managing the patient's dyspnea before death. The Shortness of Breath Scale (n = 6), upright or pillow-supported positioning (n = 2), and fan use (n = 2) were reported as helpful by caregivers.
Family caregivers confirmed that this intervention increased their confidence, as well as their ability to recognize dyspnea and help the patient breathe better:
The sooner people, caregivers, see the video, the better…I wish, I think, when mom qualified for hospice…that would have been part of our initial training. I was less anxious… the video basically, um, demonstrated the most effective way to ease her distress.
A powered cluster-randomized trial is planned. Layperson-oriented symptom assessment and management tools in the home may render comfort for patients and reduce strain, anxiety, and depression for their caregivers.