I love my job most days. Whether solving a diagnostic puzzle, hearing a patient's story about an important moment, seeing an elderly person regain their pre-hospital fitness, or sending someone home in good health, the joy is unstoppable. Even in sharing bad news, there is sometimes laughter and relief, a thankfulness for a connection between doctor and patient.
There are very bad moments too. You'd think the worst would be losing a patient I am close with, telling a young person that their life will be radically different (or shorter) than expected, or finding out I've made an error despite my best efforts. These are low moments – but they are not the worst.
The most unsatisfying, defeating moments are those I face when struggling with the ethics around the time of death and dying. Specifically, these usually occur when I think I'm dealing with "end of life care" and a patient, or more often their family, is having a hard time acknowledging that's where we are. 'Denial' or 'refusal to accept' are terms that we throw around, and while part of the natural grieving stages, these states are not meant to be permanent. There also may be an element of impatience on the part of we, the healthcare providers, who have a hard time letting grief happen in its own time.
I have a very hard time being asked to artificially prolong the life of a patient who is suffering. Take for example a 93 year old woman with end-stage dementia who is no longer interested in food, too weak to swallow without choking, and cannot communicate much - especially not her wishes or preferences. When we reach this point, most doctors believe that it is time to let nature take its course, and to treat any symptoms that make the woman uncomfortable. This woman's current state is the unfortunate natural progression of her disease. However, the family does not want to let her go; they promised they would never "give up" and so they tell me they would like their grandmother to have a feeding tube. I emphasize that focusing on her comfort is not "giving up." They hear me, but they don't really hear what I say. Try though I might, I am unable to persuade them that this artificial means of prolonging her life is uncomfortable, inappropriate, and may be inconsistent with her wishes.
It is against my morals and against my oath to force nutrition into a patient who has a non-reversible condition which prevents her from eating. Yet legally, and some would argue ethically, the family has recourse to request what they feel is in the best interests of their loved one. Often, the physician is obliged to do it, no matter how wrong or like torture it seems. Just because something is medically possible doesn't mean it is right.
Obviously there is a minefield of tension around end of life care issues. There are grey areas, physicians are not always right, and everything has to be discussed with the best interests of the patient in mind.
It's our job as physicians to work together with our patients and the healthcare team, to shepherd people to good health. I also believe it is our duty to care for the sick and dying, to be by their side and help them achieve the best quality of life for their remaining time with us. When patients and families do not acknowledge that death is a part of life, that is when I struggle most.
There is a lot of fear around death, including fear of facing the unknown. They say it takes a very strong person to know when to leave the fight. I think it takes a stronger one still to know that even in accepting death and dying, the fight is not over. One should still fight: for happiness, comfort, spiritual peace, closure with family. But fighting death, when it is clear that doing so will only harm you, is hard for me to understand.
There comes a time when "good" health may not be possible. This is not unnatural, this is not a great injustice - this is dying. And this is a normal part of life.
Back in 1995, Dr. Jack McCue wrote a paper for JAMA that is timeless. He considers our attitudes around death and dying, suggesting that the medicalization of the process diminishes the autonomy of dying patients and results in bad and wasteful care.
When I'm having a bad day, struggling with this issue, I commiserate and quip to my colleagues: "Death is not the enemy." I have a feeling Dr McCue might agree.
Read The Naturalness of Dying, from JAMA.