On The National this evening was a story out of Haiti about the new disabled population created by last year’s earthquake and the doctors who performed emergency surgery without consideration for long-term consequences. Whenever a major disaster hits, our first response is to save lives, and we applaud the medics who sweep in and provide care under the most dire circumstances. But as the doctor featured in The National segment, who revisited those whose lives he helped saved, believes now, if we’re not prepared to be there for the long term to help those left disabled in places unable or unwilling to provide support for them, the better solution would be to allow or help people die with dignity and in peace.
This story echoes in a way a conversation I had at a social gathering on Saturday: we were discussing elder care and the situation our society finds itself in where, “thanks” to modern medicine, we are keeping the body alive while the mind rots. We have pills to stave off physical death even as there is nothing to stave off dementia or Alzheimer’s, and we have created a moral climate in which we equate refusal to accept medical intervention as akin to suicide. It isn’t: it’s personal autonomy. And considering the trend to place the elderly in care homes, we, like the doctor who went to Haiti, have to ask, If we’re not in there for the long haul, are we saving a life now only to imprison it later?
This question applies not just to the elderly but those diagnosed with serious illnesses: how often do doctors actually ask their patients if they want medical intervention; how often do doctors engage in conversations about the quality of life before the situation becomes unbearably painful or terminal for the patient? We have developed a cultural ethos that argues for life at all cost, and now we find ourselves in a situation where that attitude is not only costing a fortune financially but is costing us emotionally as we prolong suffering for no other reason than we can.
Then there is our personal contribution: how often do we ask our ill loved ones what they want? Most of us do not. Instead we tell our loved ones how much we want them to live — for us. This puts an unfair burden on the person afflicted, as if the affliction weren’t enough to bear. What I find particularly distressing about this is that, in the case of someone with dementia, by refusing to have a conversation with them about the quality of life while they are still able to think critically about their desires and to relay their wishes to us either verbally or in a legal document, we rob them of their autonomy to make a choice. Instead, we take over that role (as legal guardians) when our loved one later becomes incapacitated; we decide whether to continue their medical care. And I think that’s unfair.
No one wants to suffer the loss of a loved one, but if one really loves someone, one has to put aside one’s own desires and do what’s best for the other. We have to ask the difficult questions then respect and provide support for whatever decision is made, regardless of whether the decision is to live or to die.