Her name was Darla Cummings*. She was a 52 year old African American woman who was in our nursing facility. Darla had multiple sclerosis and slowly, her muscular function was shutting down. Year after year, Darla suffered from spasms that would eventually leave certain muscles in her body paralyzed. Recently, she had had a total knee replacement and was at our facility for therapy, to help her get back to walking on her own.
Darla was a private woman who was fiercely indepedent. She would refuse her pain medications, despite the agony she was in, because she wanted to be able to get through her ordeal without becoming reliant on the opiates we were feeding her. She knew she was going home soon. She worked diligently, every single day, to overcome the obstacles in front of her. She did her best.
She died last night.
"I think I am having a spasm," she said as she gasped her last breath. We immediately started CPR on her. One of us did chest compressions while the other attempted to breath life back into her lungs. I called the next of kin, her sister, to inform her that we were sending her sister out to the hospital.
"NO," she exclaimed. "Darla is a DNR!! (Do not resuscitate). It is her wish to die if that is what is to happen to her. Do NOT resuscitate my sister!"
"Ma'am," I said. "We can't do that. She has no paperwork in her chart stating that she is a DNR. Without that paperwork, state law says we have to continute life preserving measures. I'm sorry."
"You can't do this," she wailed. "Darla wants to die. She doesn't want to come back just to suffer a more horrible death. Her organs are shutting down. Please. You have to stop CPR, you just have to."
"Let me call her doctor," I said. "Maybe he has her DNR on file. Let me hurry and call him so we can stop CPR on her."
"Please do that," she said, her voice in a panic. "please call me right back."
"I will," I assured her and got on the phone with the doctor.
"I don't have a record of her having a DNR. You have to continue life saving measures. It's state law. You keep doing what you have to do to save her life."
The paramedics arrived. They took over life saving procedure. They thumped her chest, placed a rebreather mask on her mouth and squeezed air into her resistant lungs. I called the sister back.
"There's nothing we can do," I told her. She sobbed erratically and made one last plea.
"Please. Please just let her go. It was her wish to die if this happened to her. Please. Please just let her die in peace."
And I cried. "We can't, Jane*. We can't let her go without trying to resuscitate. I am so, so very sorry. Please, I have to get back into her room. I will let you know if they are having any success."
"Will you call me?"
"I will call you. I promise I will call you."
We hung up and I ran back down the hall to see if there was any progress being made. There wasn't. She was gone despite the best of everyones intentions. By law, we have to continue life saving measures until the patient arrives at the hospital. As the paramedics wheeled her out of the building, they continued chest compressions and breathing for her. It was no use. She was gone.
I called back the sister and explained to her that we were taking her Darla to a nearby hospital, but reassured her that so far, the life preserving measures were a failure. Darla was gone...but the doctor has to officially declare her dead. I can't do that. All I could do was tell her that so far, her sister remained lifeless.
Later on that night, Darla's sister, Jane, showed up at our facility to gather her sisters personal effects. She hugged each one of us and thanked us for doing what we could. She said she understood our predicament. She held my hand as she talked to me about her baby sister.
"She was a fashion designer, did you know that?"
"No," I replied. "She didn't talk much about her past. It's odd to have someone under your care for nearly two months and you don't really get to know them at all, you know?"
"She was also an interpreter for the deaf. She flew all over the country. She was an amazing woman."
"Yes. She was. She was fiercely independent I said with a gentle laugh. "She always insisted on doing everything for herself no matter how long it took. She wouldn't take her pain medication because she knew she was going home soon and didn't want to become reliant on the pills."
"Fierce," Jane whispered. "Fiercely independent. I like that. That is a good way to describe her. She was fierce."
She continued to hold my hand as we sat in silence. She didn't cry. It was more a relieved soft smile on her face.
"She was my baby sister. I never recalled a time where she wasn't in my life. She did so much with her life. So much more than I did. This disease. It never crushed her spirit. Never."
I became teary eyed and patted Jane's hand. "She said she wanted to go home. She's home now."
"Yes," Jane said softly. "She is home now. She is with God."
We sat quietly alongside one another, taking comfort in each other. I was still so in awe of what had happened. All because of a piece of paper, this woman could not have her final wish. It got me thinking about my own mortality and how I don't have a living will in place. My wishes are known to my husband, of course, but they aren't on paper. For all intents and purposes, my life will be left in the hands of those who are responsible for keeping me alive, even if I prefer to die in peace. As though reading my mind, Jane spoke quietly.
"It was my fault," she said. "I should have brought in her paperwork. I didn't think to do it. She was getting better, you know? CP, make sure you have your final wishes in order. This should never happen to anyone. I just assumed that people would understand she was a DNR if I told them so. I was her power of attorney. I didn't know..."
Her voice trailed off.
"Did you get to see her," I asked.
"Yes. At the hospital. She looked so peaceful. She almost had a slight smile on her lips. She is finally free of the disease and she can go back to being the free spirit she always was."
"Fierce," I said. "She will always be fierce."
Her sister hugged me and thanked me again for supporting her. She told me when Darla's memorial service would be held and asked if I would come. I told her I would be honored to be there. We hugged at the front door of the facility. Then she got in her car, a full box of her sisters personal things on the front seat and drove away.
And again, I cried.
52 years old. That's all I could think about. 52 years old with a crippling disease that would eventually shut down all her organs. I can't blame her for wanting to die. I think I would too. Peacefully, with my wishes being accounted for. Wishes that I do not have on paper, but will make it a point of doing so. I learned a valuable lesson in the wake of this tragedy. You can't take for granted that people will know your final wishes. They won't. You have to have them down on paper, filed with your doctor and make sure that if you are hospitalized for any reason, that they are aware of whether you want your life preserved should anything detrimental happen to you while in their care. This week, I will get my living will in order. I would suggest to all of you that you do the same. No one wants to think about their death. It's a morbid thought. But if you don't make preparations for your final wants, no one else will know them either.
Fierce. That is what I will always think of Miss Cummings. Fierce until the last breath she took. She knew what she wanted and she wanted to be with God. She did what she wanted, despite all of us doing what we could to save her life. I wish I had gotten to know her better. She was a strong, beautiful woman. She was fierce.
And I will never forget her or the lesson she left in her wake.
*names changed to protect identity.Labels: deep thoughts, grief, nursing