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Sunday, January 05, 2014
When families refuse to accept catastrophic medical diagnoses
Tragedy often strikes unexpectedly. Over the last few months a number of cases involving catastrophic brain damage, usually as a result of surgery-gone-wrong, ended up in the news, for all the wrong reasons.
Typically they involve families refusing to accept the professional clinical judgment pertaining to their loved ones. Families insist that their loved ones’ bodies be kept functioning, the hospitals asking for permission to turn off the ventilators and other machines that keep these bodies ticking. More often than not these refusals to accept clinical, professional verdicts are related to strong religious beliefs held by these families. Invariably huge bills are racked up in the ensuing fights between the clinicians, the hospitals employing them and the families and their supporters.
Let me give you two very recent examples of irreversibly brain-damaged patients whose families are fighting tooth and nail to keep their bodies ticking. One case is Canadian, the other occurred in December in the United States. Both cases are ongoing as I write this. The Canadian case involves a patient in irreversibly minimally conscious state, the United States case involves a patient who is plain brain-dead. The former patient has no chance to recover from his injuries, the latter patient – by today’s medical standards – isn’t even a patient any longer, she is actually considered deceased.
The Canadian case
You might have heard about it. The Rasouli case, as it is called in legalese, has already led to a path-breaking court finding in the country. The story is about as tragic as they come. Rasouli, 61, migrated with his family to Canada from Iran shortly before he was in need of brain surgery. Complications arose and Rasouli is now in a minimally conscious state, irreversibly so. His continuing existence relies on a ventilator doing its job and feeding through a feeding tube. The attending clinicians believe that the right course of action would be to remove the ventilator and let Rasouli’s life expire. In their considered view he will eventually die from complications resulting from the various interventions required to keep his body alive.
The Supreme Court of Canada ruled recently that Rasouli’s doctors cannot remove the ventilator unilaterally and his family’s religious beliefs require that everything be done to keep his body alive. Reportedly the cost to taxpayers of the family’s demands has been a bill of about $3.5 million. Clearly this is a lot of money to pour into futile care. Money that could be utilized to reduce hospital waiting times, among other things. The Toronto Star reports that Rasouli’s family found him space in a specialized care facility where his care will cost the provincial taxpayers only a miserly $1,000 per day. Meanwhile the family is fighting hard to get taxpayers to also cover the accommodation cost of about $1,700 per month. Again, that’s a lot of public money to pour into futile care.
The United States case
As in the Rasouli tragedy this case also hit a family ‘out of the blue’ so to speak. The 13-year-old teenager Jahi McMath underwent surgery to remove her tonsils to address her sleep apnea. Something went badly and quite unexpectedly wrong. McMath was formally declared brain dead by a judge in mid-December. The United States being what it is, a court battle ensued. The family of the deceased teenager believes fervently in religious miracles and insists that their dead daughter is moved to a care facility willing to accept the body. Just to explain, neurological, or brain death, is a technical term for the irreversible shut down of the brain. It doesn’t mean that the body can’t be kept going for a few weeks, even months, before it eventually begins to decompose. Accordingly the family hoping for their miracle will be able to notice bodily twitches, sadly not dissimilar to decapitated hens jumping around on the ground until their body finally shuts down.
A care facility operated by a former owner of a beauty salon has declared its willingness to care for the deceased – oops, the patient’s – body. Only in the United States you say? That’s quite possibly so. There are further complications in this case, requiring that the hospital where the body is currently kept ticking undertakes surgery to prepare it for transport. Luckily for the parents, the United States is a deeply religious and not terribly science literate country, so donations are flowing in generously to finance the preposterous move to the ‘care facility’ operated by the former beauty salon owner. If this wasn’t all so tragic, you can’t help but wonder when this will be turned into a reality TV show.
Unlike in Canada, none of this is about tax monies. In this case private resources are being burned to essentially play around with a dead body. There are ethical issues about demanding that doctors undertake surgery on a dead person. There are also ethical issues about what we should reasonably be permitted to do with the bodies of our deceased loved one’s.
Leaving those issues aside, however, it seems to me that an unfortunate confluence of science illiteracy and religious belief motivates families unprepared for the unexpected demise of their loved ones to go to ever greater length to keep whatever is left of their loved ones around.
High-tech permits our hospitals to oblige them with remarkable results. The highest courts in the lands are breaking new ground with regard to what can and cannot as well as what must and must not be done with these corpses. I wonder sometimes – to the dismay of most of my colleagues – whether we got the ethics of these cases all wrong.
The real patients here arguably are not the deceased (or nearly deceased) ones but their family members. Perhaps we should consider accommodating some of their seemingly outlandish wishes to give them time to let go of their loved ones. After all, it is not as if the deceased teenager will suffer as a result of being put into the so-called ‘care facility’ run by the former beauty salon manager. There are difficult issues to be resolved involving the participation of doctors in activities that do not actually serve who they consider to be the patient. What should be clear, however, is that none of this could possibly justify expending huge amounts of tax payers health care resources on futile care activities, as is currently clearly happening in Rasouli’s case.
Oh yes, and perhaps civic lessons in science literacy might be a great idea.