Tuesday, January 18, 2011
A growing number of studies have focused on the psychological burden of advanced disease. A recently published study in Critical Care Medicine evaluated the psychological burden in patients with COPD and their caregivers after an ICU stay. The study was performed in France by the same group that brought us the trial of an ICU communication intervention published in NEJM a few years ago.
The study population included 126 patients who were admitted to one of 19 ICUs >24 hours for COPD exacerbation. The population was quite ill in general, both chronically and acutely. Most of the patients (80%) received non-invasive positive pressure ventilation and 30% received invasive ventilation during their stay. Patients were diagnosed with COPD for a median of 5 years and a little more than half had a previous ICU admission. A little less than a half wore oxygen chronically and a fifth used NIPPV at home chronically.
Of the 102 relatives evaluated, 54% were spouses, 39% of relatives were informal caregivers, and 37% were the only caregiver at home. Care was provided primarily by a health care professional at home (not described) in 22%. The percentage of patients who were discharge home (vs. other facility) was not described.
The experience of advanced COPD seems like one of always "waiting for the other shoe to drop" for both patients and their loved ones. It's only a matter of time before the next exacerbation and with each exacerbation comes significant suffering and the specter of death. It should therefore come as no surprise that patients in this study and their caregivers carried psychological morbidity as evidenced by a significant proportion having symptoms of depression, anxiety, and PTSD at the time of ICU discharge with the rate of symptoms decreasing after 90 days, but still present in a significant minority. Caregivers appeared to have comparable or greater rates of anxiety and symptoms of PTSD than patients as measured by the Anxiety Subscale of the Hospital Anxiety and Depression Scale and the Impact of Events Subscale (measure for PTSD).
- Patients with significant anxiety at time of ICU discharge were more likely to have significant anxiety at 90 days.
- Factors associated with PTSD symptoms in patients at 90 days included having a previous ICU experience, having a greater dissociative experience at time of ICU discharge, and recollection of a bothersome noise in the ICU (how could one not recall a bothersome noise?)
- Factors associated with relative PTSD symptoms at 90 days included ICU size >12 beds, patient dissociative experience, and depression at time of ICU discharge.
- Curiously, past provider documentation of anxiety or depression did not correlate with any psychological symptom in patients at time of ICU discharge or at 90 days.
About half of patients and relatives were lost to follow-up. Figure 1 appears to be erroneous with the "relative" lost to f/u group and "patient" group mixed up. It does appear that death was a cause in only 7/106 patients.
The authors point out that anxiety and depression may lead to an increased frequency of COPD exacerbations, and hypothesize that better addressing those patients at risk may reduce exacerbations and death. I'm not familiar with other literature on the relationship between depression/anxiety and exacerbations but psychological and physical symptoms are certainly a two-way street with one compounding the other. As said previously in a different context, addressing the psychological morbidity in this population for the sake of relief of suffering would seem to be a good enough rationale for the development of more targeted palliative/psychological interventions regardless of whether it impacts exacerbation rate/mortality, etc.
And the caregiver burden issue keeps coming up again and again. I really cannot speak to how the French provide support for caregivers in this circumstance (either formally or informally). Regardless of cultural differences, the trajectory of COPD is such that it is most certainly a significant burden on American caregivers (and could American rugged individualism put us at higher risk...or is it a protectant?). The outcomes measured (including HADS and IES scores) have appeared in multiple studies over the last few years when looking at caregiver burden. Even though the studies looked at different populations in different countries, at least three studies come to mind which have examined scores in caregivers 90 days after an event (death or discharge). I thought it might be an interesting exercise to put those scores in a table for comparison. (Other studies referred to can be found here and here.)
Although the explanations could be various, it's striking that the first two studies show similar rates of depression, anxiety, and PTSD symptoms in loved ones 90 days after the "event" (I should note that the median IES score in the NEJM study post death amongst all responding subjects was much higher than in the present COPD study). In the first study, you have family members 90 days after their loved one's ICU death. In the second, you have a group of relatives in the middle of worrying about and/or caring for a very sick loved one 90 days after ICU discharge. Think of the expansion of morbidity in the second group and how this is a recurring nightmare for some patients/caregivers. While we work towards supporting these patients and caregivers more comprehensively, we'll need to simultaneously realize that in some cases, the experience may be traumatic enough to influence further advance care planning (regardless of how well their psychological symptoms are managed i.e. it's not reasonable to say that "we'll manage your psychological symptoms so well that an ET tube will look like a straw in a milkshake.") Furthermore, the caregiver with PTSD one day can become the vulnerable surrogate the next day requiring specialized support. Greater advance care planning with the patient will help to reduce the burden on that caregiver should she need to play the role of the surrogate.
One wonders how American nursing home admission would modulate the results. My hypothesis? A relative shift in psychological morbidity from the caregiver to the patient (although having a loved one in a nursing facility is no Happy Meal for the relative, either).