One of the hardest things any of us have to do in life is decide when treatment is no longer working, and when comfort care is the best care that can be given.
This is especially hard if we have to make that decision for a loved one who cannot decide for themselves, and is complicated when that person never completed advance directives. As a nurse, I find that various cultures approach end of life differently, and thought I’d make this blog about that, maybe as a sort of guide for how to have end-of-life conversations with patients of different religions and cultures.
As I did research for this blog, what I found was that in my experience, people don’t fit neatly into religious boxes. Most religions have official websites, and official stances on end-of-life matters, but I was surprised to find that no matter how dedicated to their churches they are, patients and families have widely varied approaches to end-of-life care that differ significantly from official church dogma.
Some people believe that a miracle is going to happen, and any mention of a negative prognosis betrays a lack of faith that interferes with that miracle. From a medical standpoint, when care appears to be causing more harm than good, and there is no hope of recovery, we try to help patients and families understand. We tell them that while we understand they believe it is in God’s hands, it's possible that the things we are doing aren’t effective because God has already decided and we're just working against him. But no amount of reasoning can change that strong belief, and we must respect it.
Sometimes, people have had multiple experiences when someone critically ill recovered despite all odds. Their hope of recovery is then reinforced, and their confidence in the prognostication skills of physicians wanes -- understandably so. In the future, when the prognosis is poor, why should they believe doctors? How can they justify stopping aggressive care when there is a chance, however small?
The concept of suffering is subjective. As medical people who are often at the bedside, we see suffering differently than a loving family member because we come from a different place. We have seen how these things end the majority of the time. But loved ones know that we get one life, and they may see any pain or suffering as an obstacle to be overcome. Long-term handicaps may be, in their minds, worthwhile battle scars.
As bedside nurses struggling to cope with the ever-increasing patient census, we are already feeling fatigued. When we feel we are contributing to suffering by providing futile care, that burden gets heavier. We start to resent the people that we think are “inflicting” this kind of suffering on the patient. But let’s not forget that the people making these choices are doing so out of a place of love.
They aren’t seeing it as inflicting suffering -- they see it as being hopeful.
We cannot always change that perspective, but we can always provide the best care possible for the patient. We can take solace in knowing that we are providing comfort, pain relief, and giving the best that we can give. We are supporting hope.
We can continue to have tactful end-of-life conversations, but we shouldn’t make the family feel pressured to make decisions that they are not able to accept. We should never make our discomfort their problem, or a factor in their decision making.
When we approach end-of-life conversations, we cannot ignore the religious, cultural, and experiential factors that impact a patient or family’s decision. And we must support whatever decision the family makes.