A college roommate of mine who happens to be an ER physician posted this article on her Facebook feed today, "Our unrealistic attitudes about death, through a doctor's eyes" an editorial piece by Craig Bowron. My favorite line of the article:
"Opting to try all forms of medical treatment and procedures to assuage this guilt is also emotional life insurance: When their loved one does die, family members can tell themselves, “We did everything we could for Mom.” In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that “we sure put Dad through the wringer those last few months.”
It made me think back on my own experiences with death. I've had two grandmothers who had the privileged of picking the manner of their own death. You might think privilege is a poor word choice but bear with me for a few paragraphs. The first was my Nana Flo, who was my favorite of all my grandparents. Is that even ok to say? Well she was. I always felt I had a special connection with her, as did apparently all of her grandchildren, and when my parents got divorced I took a special comfort in her warm and tender love. I also took comfort in our shared features. I was a chubby girl/woman with two exceptionally thin parents and three younger sisters who are not only beautiful but well proportioned. My Nana though had a larger frame like me and often carried a little extra chub. In her figure I saw my own and while it might not have been the figure I wanted at least I could see where it came from. She was a fun grandmother. She played and did makeup, she would eat pizza on the living room floor, paint our nails, and talk about boys. My love runs deep. When I was 18 years old, at my first year in college, I got news from my mother that my Nana had been having trouble breathing and had been taken to the hospital where she had been diagnosed with lung cancer. I was devastated. I decided at that moment I would transfer home so I could spend more time with her. At the end of summer I headed home and quickly enrolled at the state school. The next year went pretty uneventfully. The effects of chemo and radiation took their toll but in the end I had a cancer free Nana again. She was doing so well that in April I decided to once again return to my out of state school the following winter. Then tragedy struck. One morning while rubbing a sore spot on her back my Nana discovered a lump. It was tumors in her lungs that had returned with a vengeance. She then made a choice that at the time I found exceptionally difficult. Rather then start a new round of chemo and radiation my grandmother decided that she was satisfied with the 68 years she'd had on earth and that she would finish out the end of her life with just minimal medical intervention for pain. I was beside myself. I hadn't married at the time, I had no children, I hadn't graduated from college, started a career, bought a house. These were all things I imagined I'd do with her still living. I was one of her older grandchildren and I'd always imagined I'd have the opportunity to place my own daughter in her arms someday. I did not want to let go and at a time when I felt like she had more paths to try I couldn't understand how she could be ready to let it go. But let it go she did. Within just a few months her health had deteriorated to point where she had to be put in hospice care. I was there every hour I could be, sitting by her side, trying to entice her to eat, listening to my grandpa eat pork rinds and reminisce over the old days. The day she died I was home in bed. My uncle had sent me home for a nap and I got a call from him an hour later asking me to drive by my moms school to let her know her mother had passed. The void she left was gigantic and I was distraught. For years after I held a grudge that she had not tried harder. I wasn't ready to lose her and I didn't understand what a blessing it was that she had the opportunity to make her own health care decisions about her own end of life care.
More recently I lost my grandma Marvel. I heard about her death while I was driving home from a trip to Utah two summers ago. Somewhere in Wyoming my mom called me to tell me that Marvel had fallen and broken her hip and was going to need surgery. Then she called me to tell me they couldn't keep her blood pressure up. Medication wasn't working and the only thing they'd found that worked was having her lay in bed with the bed tilted toward her head and keeping her pain medication levels at a minimum, it was the only thing keeping her alive and it left her in excruciating pain. My aunt and most of her children, my ex step father, and my two brothers went to visit with her in the hospital. My uncle Bruce jumped on a plane. My uncle Greg was unreachable somewhere in the wilds of Alaska, his work was trying to call him in but was having no success. My brother played her a song on his guitar. She told each family member she loved them and bore her testimony to them of her belief in God the Eternal Father, of Jesus Christ his son, and the truth of our church. My mom told me that afternoon when she called me somewhere on the plains of Iowa that Grandma Marvel told my family that she was holding hands with my grandfather (he died when I was 16) and that her sister Sandra was sitting at the end of her bed (she'd died two years before) and it was time to go, and then she asked the doctors to put the head of her bed up. They complied and she died before my uncle's plane had touched down.
As Dr. J has worked with many dying patients I have come to realize what a blessing it is to be able to make your own health care decisions. When many families come to death they don't know what to do. Even when people are aware that they are ill parents and children will often resists talking about it until it is too late and wishes are not well known. Children, spouses, and doctors will come in with conflicting plans of attack. Feelings may be hurt. Everyone is in shock and grieving which does not lend its self well to decision making. Sometimes doctors are pushing aggressive interventions. Sometimes all the children or half the children, or one child, or a spouse is. It can be heart wrenching and it often leads to long drawn out deaths and hurt feelings. Years ago I heard of a family who after the children insisted the medical professionals follow their mother's wishes that she could no longer voice for herself to have no medical interventions the father turned to the children and said, "I hope your happy. You killed your mother." Death is hard. It is lonely. It often makes us angry. Twelve years ago I was angry at my nana. I wanted her and I felt like an outlier treatment attempt was worth making if there was any chance I might get to have her for longer. Ten years later when my grandma died I realized what a blessing it was for my nana to make her own health care decisions, to realize she'd come to the end of her life and was ready to let go of the pain regardless of how I felt about it. I realized that my Grandma Marvel was privileged to be able to take that decision on to herself. She was able to save her family the guilt of trying to decided when enough had been done. She was able to find her own relief. She was able to choose the moment that she returned to the arms of my grandfather.
I'm not saying that the answer is always to pull the plug, but I am saying that when it comes to death and dying, to knowing when you've had enough that the patient should be the one who gets to make that decision. The problem is most of us when we get to that point won't have clarity of mind or be conscious to be able to weigh in. That's why we need to think about it now. We need to let our families know what interventions we want, what conditions we are willing to live with, and we need to be realistic about how long we are going to be able to live, because the one inevitability of life is that all of us will surly leave it at some point. Most importantly we should all have a living will. You can pay to have an attorney write one up, you can pay $40 to have one done on legalzoom.com, or you can find a free form here. It gives your family piece of mind that they are making the right choice for you and it gives you the privileged of making the choice you want for yourself.