The strange, sad case of Jahi McMath, the 13-year-old California girl who was declared brain-dead over her family's objections, has reached what is likely to be its final chapter. Transferred into her mother's custody and placed in an unnamed extended care facility, experts doubt that this once-vibrant teenager will continue to show signs of life for very long. Without meaningful brain function to control her body's physiology, it seems likely that her heartbeat will soon stop permanently. Whether that happens in days, weeks, or even months is anyone's guess. But that event will end speculation about whether Jahi is truly dead.
This ethics debate has been one of the strangest, and most emotionally charged, to hit the headlines in recent memory. The fault line that divided public opinion about the definition of death in particular, and Jahi's story more generally, was marked on both sides by the language of hope. Those who talked about what happened to Jahi McMath, and about what her family and physicians should have done, employed this word frequently. The way that word has been used, though, is misguided and ultimately meaningless.
On one side of this divide, the language of hope has been invoked to suggest that this tragedy could have been avoided entirely. If only the family had not clung to unrealistic and irrational hopes, none of this drama would have unfolded. If they had accepted the widely-held (legal) view of death as the cessation of brain function, Jahi would have been declared brain dead (and therefore dead). Her life support would have been discontinued, and her family could have taken the first steps on what is certain to be a long, difficult path of grieving.
On the other side of this divide, the language of hope has made a very different appearance, and has been used to promote a very different message. On this side are those who have supported the decision of Jahi's family to pursue every possible treatment. Of course, they say, a family must cling to hope. It's understandable, and natural. It's even laudable. Shouldn't good parents hope for the best, and do everything possible to pursue that hope? Indeed, what would we say about parents who would give up hope too quickly?
Which of these uses of the language of hope is the right one? Neither. As I've learned in more than a decade of work as a hospice and palliative care physician, the rhetoric of hope when used in these ways contributes little to discussions with my patients and their families about what the future holds.
To say that there is hope is meaningless. Hope for what? For a cure? For a longer survival? For a return of some degree of brain function?
And to say that there is no hope -- a statement that I hear far too often from well-meaning colleagues -- is meaningless. Of course there is always hope, for something. This statement is harmful, too. To say that there is no hope effectively cuts off any thought for the future.
What could Jahi McMath's family have hoped for? That's the most important question, and it's one that hasn't received any attention. But there are possibilities.
They could have hoped for an assurance that Jahi wasn't suffering. They could have hoped that their entire family would have a chance to come together to say their goodbyes. They could have hoped for an understanding of the events following the tonsillectomy that led to her death.
These hopes may sound pitifully anemic in comparison to the hope of a daughter returned to health, and of course they are. That's why it's essential for health care providers to help patients and families to navigate the language of hope. Perhaps no one could have convinced Jahi McMath's family that hope for her recovery was unreasonable. Someone could have offered other goals to hope for. Goals that were more realistic, and hopes that might be realized.
The real tragedy of the role that hope played in Jahi McMath's story, though, is how common it is in health care today. Whatever your illness, there is always another treatment available. Third line chemotherapy, for instance. Or a transplant. Or an clinical trial. There is always "hope." Until health care providers become more skilled in helping patients and families to choose their hopes carefully, many of us will continue to receive the most aggressive treatment possible because there is still "hope," without the chance to reflect on what that word means to us.