These last few weeks, there has been a particularly troubling story in the news about 13-year-old Jahi McMath. For those unfamiliar with her story, here is an article from CNN, which provides a synopsis of what has taken place over the past month. Briefly, in early December, McMath went into a California children's hospital for a surgery to treat pediatric obstructive sleep apnea. After surgery she was okay for a short period, but then suffered unexplained profuse bleeding. Despite the doctor's best efforts, McMath went into cardiac arrest and was placed on life support.
Follow-up tests showed that she had suffered massive brain damage and had no cerebral or brainstem activity. Doctors declared she was not only brain-dead, but just before Christmas a coroner actually issued a death certificate. All the while, McMath's family refused to take her off life support. The courts and third-party groups got involved and just this week the courts ruled that the hospital had to release McMath to her family, still on life support. The family states they are transporting her to a facility where doctors will "treat" her, but haven't disclosed her condition or where she is.
It's a sad and tragic story. It brings back memories of the Terri Schiavo case in 2005. These situations are never easy to come to terms with, especially for family members, when something so sudden happens to someone who was so seemingly healthy. Working in an acute setting, it's not uncommon to see patients who are nearing the end of life. We have a hospice unit at our hospital for patients receiving only comfort care, and obviously our ICU sees a fair number of cases where perhaps more sudden events have led to difficult situations for family members making decisions about goals of care for their loved ones. It's never easy.
It doesn't happen too often, but on occasion, we'll receive an order to see a patient who is on hospice care. Sometimes these orders are completely appropriate. The family and patient want to know what equipment they may need if they're going home with hospice care. They may want to know what kind of assistance they'll need at home or how they can maneuver. In these instances, PT is definitely warranted to try to help patients and families problem-solve and plan to make this transition as easy as possible. In other instances though, we'll receive PT orders for patients who are very low level at baseline and have difficulty with even maintaining alertness. The order often derives from family wishes to have patients "try PT" to see if they can do anything or even improve their level of function.
Our department has had many discussions about whether we should keep these hospice patients on our schedule. Some say yes. They argue that it's our job to help patients transition to whatever their next level is and make their quality of life as high as possible, within their stated wishes. Others (and I'll admit I fall into this camp too) hold that PT intervention does not necessarily coincide with the goals of hospice care. To me, hospice care exists to make patients comfortable when there is no clear sign their condition will improve. Alternatively, I think PT exists with the expressed purpose of improving people's strength or mobility or function. Again, with the exception of those "planning" type of PT orders, I wonder, should PT really be involved in the care of hospice patients? What role do we play in end-of-life care? Any thoughts?
Also, I should say this: I know it's a very touchy subject and one that has certainly drawn national and international scrutiny over the years. I know there are many opinions out there and certainly don't believe my views are any more right or valid than anyone else's. If you choose to post a response, and I certainly encourage you to do so, I just ask that you please be respectful. Thanks.