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:
1)
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.
2)
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.
3)
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.
