The diary below started as a comment on Joan McCarter’s piece, “RIP 'death panels,' and welcome to a bit of sanity in our national health system.” After thinking about it I thought I would expand upon that original comment. Being five years removed from having to make a decision to end life support for a family member allows for some clarity that I did not have when I wrote, “I wish she would die.”
After that post, I received the well wishes of many, many members of the Daily Kos family. I also had people seek out my email address, phone number, and home address to contact me and tell me just how horrible a person I was to wish for the death of my beloved mother.
On March 3, 2010, my brother, sister and I had to make the decision to “Pull the plug” on my mom. She had a do not resuscitate order, something she decided upon after seeing what my father looked like after lifesaving efforts failed him, but the hospital still required us to make the final decision as she had not stopped breathing. No one talked to us about it, no one told us how we would feel afterward, nor did anyone tell us of how some people would react upon finding out about the decision we made.
My mom had been in a nursing home at that point for six years, suffering from dementia, she was in intensive care, and then acute care at St. Mary’s Hospital for a couple days with congestive heart failure. If you have never gone through life with a loved one with a form of dementia—then count yourself lucky—it is truly a form of hell on earth, not only for your loved one, but for the family as well.
When the time came my siblings and I met in the waiting room of the hospital floor, by the elevators where everyone could hear us talking. We had no privacy for this decision. As I look back on those events five years ago, I am shocked and stunned that the hospital did not give us a private space to discuss our decision? We were in a public hallway, next to the elevators. How could that be something that anyone would think was okay?
The hospital put her on “comfort care” immediately. When she passed the next day I had a sense of relief. Her suffering was finally over. To this day, even though I know we made the right decision, I feel a twinge guilt for it—always wondering if it was the right decision.
There are those who cringe when I say it brought relief to me and my siblings—but they have no idea what it was like to see a loved one confused and in pain. To see her have moments of clarity, then, just moments later have her think you are still in high school—25 years after you graduated. My mom went from being a person who decorated wedding cakes and taught candy and cake decorating classes, to someone who could no longer remember to put water in a pot before boiling pasta.
Things are finally changing for the better:
The new Medicare rules will help encourage and normalize end-of-life conversations. Beginning Friday, doctors and other clinicians will be reimbursed for talking with all their patients—not just sick patients—about end-of-life care. Quietly, in one room after another, in 2016, a talk that almost derailed Obamacare in 2009, will become routine.
A modest payment of $80 or $86 is not in itself going to change the way of death in America. We still need to help clinicians become trained and comfortable as they talk about the D word. We need to be sure that when the time comes the health care system respects those treatment plans—indeed, can even find them.
More than anything else, these are not just conversations to have with providers; we need to have them with people we love, those who may have to decide for us. This is more than a code on a chart; it’s a gift.
One thing missing in this discussion, is support for families that have to decide if now is the time to end life support. No family should have to make a decision like this in the hallway of the hospital. No family should have to make this decision alone.There has to be a better way to plan for death, and to allow for death with dignity. Not just for the one who is nearing the end of life, but for their loved ones as well. My siblings and I respected my mother’s wishes as best we could. The three of us spent the night in the hospital with her—the hospital provided one bed for the three of us in my mom’s room. That night I slept sitting up on a metal folding chair. The next morning my siblings stepped out for a change of clothes and a shower. I was holding my mom’s hand when she passed away—I was the only one in the room.
I never cried at her funeral—I had said my goodbyes years ago, before the dementia took its toll on her mind. We lost her twice, once when the dementia took her away, and then again when she passed away. My mom was prepared. She had given my sister power of attorney over end of life decisions, she had a do not resuscitate order, but even with all that preparedness, we still had to make the decision about keeping her on life support. The sad thing is, just two years later, my vet showed more compassion to me, and to my family when it came time to make the decision to put my Shepherd/Lab mix Duke down. The decision was made in private, he was put to sleep at my home, and the vet took the time to reassure us that we were doing the right thing. She even left us with literature on dealing with the loss of a pet. My dog, Duke, suffered far less in his final hours than my own mother did in hers.
We need to change the way we think and talk about death. The change in medicare rules is a start—but we have a long way to go.