Irretrievable losses

Every once in a while, I sit down in a room full of doctors and we decide how we want someone to die.

There is no scheming and no menacing plot. Rather, the family conference—when doctors and family members sit down together to discuss a patient’s case—is an important venue for decision-making. In his book “Being Mortal,” the famous writer-surgeon Atul Gawande talks at length about the difference between a doctor’s goals and a patient’s hopes. Sometimes the former are aggressive and aim for cure, while the latter can be just a hope of decent quality of life. Family conferences are a way to bridge the gap between the two, and allow the family to have a say.

This doesn’t mean that they are any less depressing to participate in. In them we meet families in various stages of grief. Children who are unable to accept their mother’s terminal illness. Husbands who have transcended the initial shock to settle comfortably in a state of inappropriate affect, laughing and smiling while the healthcare team tries to maintain its stoicism. Parents of pediatric patients who are not trying hard enough to collect funds for their children’s treatment and who have to be shaken into action. Families who have just made the difficult decision to sign advanced directives and to watch a loved one go peacefully with no CPR.

It’s interesting to watch the doctors as well. During most family conferences, a consensus is reached. For a terminally ill patient, the family and the health professionals are able to arrive at a decision on whether to proceed with more invasive, possibly more costly, more risky interventions, or not; often the balance between risk and benefit is clear to the doctors, and only needs explaining to the family. Some doctors are more committed than others to preserving quality of life, however, and some are focused on helping the family to save itself from catastrophic expenses.

One thing is for sure—that watching someone die should always be a little difficult, and deciding how they should die should be no less difficult. That isn’t always the case. Most doctors walk away from conferences like this unscathed, and go about their business while the family is left reeling internally. There’s nothing wrong with that, really, since death is such a part of hospital life that it would be pointless and counterproductive to dwell mournfully on each mortality.

I used to be like that, too. I used to ask what the point was of prolonging someone’s suffering. I thought of costly treatments for patients who were still dying and say that they were unnecessary—until my mother died abruptly from a stroke and all my knowledge of the art of medicine was blown out of the water. I realized then that, really, there is no logical point to prolonging someone’s life—but that love often knows no logic, and sometimes love would do anything for just five more minutes with the beloved.

I write this only to say that the experience of grief is so intensely personal that it seems to me unreasonable, even gauche, to impose external expectations regarding its expression. A family’s willingness to pursue treatment or opt for palliative care is not a reflection of its love. Doctors look at survival ratios and bills and stand in judgment of a family’s willingness (or lack thereof) to pursue further treatment. We judge them for wanting to stay longer in the hospital when there is no hope of recovery; we judge them for wanting to be discharged against medical advice when we think there is. Nobody ever truly wins in the debate, and yet someone always loses, and it’s always the family.

It’s funny how we should be so knowledgeable about extending life, and yet ham-handed at dealing with death; so good at expressing opinions on whether a family is too aggressive or isn’t aggressive enough. So good at deciding when it’s someone’s “time to go.” Maybe it’s time to accept that our degree did not come with qualifications to teach people about loving and losing—and that maybe, in this one area, the patients and their families might teach “us” a thing or two.

kaychuarivera@yahoo.com