Incorporating end of life care and hospice-a national challenge

We have been rounding on a young man with a devastating outcome of a type of Guillan Barre Syndrome. He hasn’t recovered any of his strength and is dependent on a ventilator. The neighboring patient similarly came in acutely ill but has not recovered and is chronically malnourished, with muscle wasting and a grimace that seems permanently on her face despite how much we try to control her pain. Both patients have bed sores which developed while in the hospital, likely due to lack of staffing to turn patients as frequently as they should be turned . I know that I don’t have any real chance to offer them a road to recovery and so every day I urge the students and residents to pay close attention to all non verbal cues of pain and anxiety. In the US this is done expertly by the nurses who follow a protocol which is meant to ensure proper control of pain and anxiety as being in an ICU, on a ventilator is very traumatic. Studies show that those that survive an ICU stay have significant psychological trauma from the under treatment of pain and anxiety leading to severe PTSD. In many cases when we have patients we cannot fix, maybe a patient with overwhelming sepsis with a background of a devastating cancer or end stage liver disease with no chance of transplant, or so many other disease processes where no meaningful recovery can be achieved we discuss the potential for comfort guided care and Hospice. The services provided are so incredible for the patient and the family and it is again something I used to take for granted. Here, these two patients I mentioned would benefit from Palliative care and Hospice however there is no mechanism for this and no structure of inpatient hospice or outpatient hospice. In fact, the case of the first patient with Guillian Barre, he has close family who want to take him home, meaning they understand that this means removing him from the ventilator. The desperation is clear, they feel it too, there is no meaningful outcome for him so why keep doing what we are doing, in a setting (the ICU in a hospital) which causes so much anxiety and pain. Instead of being able to discharge him to hospice his family had to sign the equivalent of an “AMA” form (Against Medical Advice) to take him home which is an 800 km travel distance. We made it clear he may not survive the transport but that it is best he is with family. Ideally in a scenario in the US where we discontinue the use of the mechanical ventilator we discuss the process of what will happen and have pain medications (which can also be used to treat breathlessness) ready to keep the patient as comfortable as possible with the minimal amount of medication. Unfortunately given that this patient is technically leaving AMA we are unable to provide him with any of these medications. This was a difficult thing for me to come to terms with as I have actively been a part of the process of discontinuing life support in settings where comfort-guided care is chosen as the mode of treatment, those who heavily rely on life support may pass quickly—as this patient likely will. If not prepared this can be traumatic for the patient and the family as the patient appears to be and likely is in great distress. Our job as the clinician is to allow the natural process of death to happen, not to hasten it but to allow as much peace as possible.  I can only hope however he passes that it is as peaceful as possible and that he feels the presence of his family and the breeze of the cool Ethiopian air as he attempts to make it to his home.

When I asked what the obstacles were to pursuing hospice and palliative care the response was seemingly frustrating to the Physician who clearly has been campaigning for such a system. He said that this has to go through Parliament and that process not only will take time but he did  not feel optimistic that it could happen. So what is the trickle down effect of this? Well in cost-effective terms—over utilization of resources. In human terms—prolongation of suffering. That said we are trying our best to provide the most comfort to the patients who we know can’t recover, being even more thoughtful about interventions we provide in thinning about the true benefit they provide. The collective hope of all of us here in the ICU at Black Lion Hospital is that in time such services will be available.