by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)
When someone dies, the grief for those left behind comes in waves. You have your good days, where the sun shines inexplicably and you know that there is joy in the world in spite of your loss. But, you also have the dark days, the days when even seemingly insignificant events leave you weeping in the corner desperately wishing you could bring the person back healthy and whole. Every member of my family has had and will continue to have our dark days after the loss of my dad.
Dad was a real presence in our life, he had a great sense of humor, cared deeply about what was going on in the lives of the people he loved, and had an opinion about everything. Without him, there is a void.
My family is not unique, anyone who has experienced a significant loss knows this story, the ups, the downs, the days you are doing great and unexpectedly crash hard into, “I miss my Daddy.” So, how does this melodrama and seemingly self-indulgent rant tie into the world of bioethics? One word…guilt.
On the dark days we run events with the person we lost over and over: fights from months ago, days you went to visit and didn’t stay as long as you could have, times when you could have done something different to make him more comfortable, times when you were not as patient or kind as you should have been, or his last days and the events that led to it. Even if you have little or nothing to feel guilty about, and are secure in the knowledge that you did the best you could with the tools and information at your disposal, feelings of false guilt, failure, and regret creep in on the dark days.
During my schooling I have read several end of life case studies, so not many of the turns we took in the ICU surprised me. I knew on the day my father was taken to the emergency room that we may have to eventually make the decision to remove ventilator support and allow him to die. I also know that this was the right decision. However, I still have moments when the whole situation haunts me, when I wish there had been another way and when I feel responsible for my father’s death.
The current medical system made me take on that responsibility. The doctors at the hospital chose to allow me and my family to start every conversation about removing Dad from life support. The hospital’s policies forced us to make every difficult decision and bear the full weight of those decisions. This is an unjust system! What are we doing to families? Families already wracked with grief, existing on fumes of adrenaline, and in a fog of sorrow and confusion.
To a person in this weakened state the medical community says, “make the most difficult and agonizing decision of your life, it’s all on you kiddo.” I am not saying that the medical staff should take this decision solely upon themselves, there is a sense of closure that can come to the family from being part of the decision making process. However, it should be a true team, with all members bearing responsibility, but the doctor perhaps taking the lion’s share.
The physician has chosen his/her profession, and in the profession of healing your patients will sometimes die. Everybody will die eventually, and physicians play the role of gatekeeper, having to know when someone can be saved and when to let them go. The day my father died, was just another work day for his nurses and physicians, as it should have been. They didn’t know my dad, or love him like we do; they wouldn’t and shouldn’t be affected by his death like us either. This makes them more able to bear the responsibility of the final decision, they won’t be haunted by guilt, regret, or questions for the rest of their days like the immediate family members will.
I think there is a happy medium between making the decision without family input and forcing the family bear all of the responsibility of the decision. This is taking a team approach, ask the family to be part of the team, bring them into important conversations and explain what is happening in a way that they can understand. The physician should lead this team and the conversations about removing life support, and should facilitate the final decision. If Dad’s doctor had stepped up to lead the conversations my family would have felt like we weren’t alone in the decision making, and that the doctor was taking responsibility for his patient. Without this, we felt like we were the only ones who cared about what was truly best for Dad.
Reflecting on our experience, I think poor hospital policy was what really shifted responsibility on to my family and off of the hospital and staff. A few minor changes and I would have felt like a team member:
- The palliative care nurse had to ask us whether or not we would like to start my father on vasopressors because his blood pressure was increasingly unstable. This in itself was not a problem; the problem was that she still had to ask us this during a conversation about taking my father off of all life support.
- The nurse practitioner had to tell us several times, that removing the life support would most likely lead to my father’s death and ask if we were sure this is what we wanted the medical staff to do. Making sure the family understands the decision is important, but repeating it 3 and 4 times because of the hospital policy only forces the responsibility of the action on the grieving family and made me feel as if the hospital was washing their hands of what was about to happen.
- The hospital could enact policies and trainings that help physicians with communication skills for dealing with end of life issues. Encourage the physicians to take on the responsibility with their patient’s family at this difficult time and take a team approach.
I will live the rest of my life carrying the memory of how my father died. I know logically that we made the right choice for him, and that my family has nothing to feel guilty about, and when those natural feelings of guilt creep in, I can dismiss them. However, I see no reason to put more families through what mine went through, and would really like to see hospitals and physicians work to change this broken system.
[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on November 16, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]