Caring for Alvina
I was afraid of Alvina. She first came to see me when I was in my 3rd year of residency in Seattle. She had moved to Seattle from her home reservation and was living with her daughter. Chronic alcoholism had taken its toll on her. She had tried to commit suicide years ago and had shot herself under the chin. The bullet missed most of her brain, but went up through her skull and lodged just behind her right eye. The bullet destroyed most of her face on the right side, her jaw didn’t close properly and her right eye was blind, dull gray, and looked off to the side. She wouldn’t make eye contact with me with her good eye, so her dead right eye would fix on me with a baleful stare. She was in her 60s, but looked much older. She was unable to fully use her left arm and leg due to her brain injury.
In addition, she had cirrhosis of the liver from years of drinking. When her daughter first went to bring Alvina to live with her, Alvina was in the hospital. She had been in the Intensive Care Unit for over a month because of bleeding from esophageal varices. These are huge blood vessels that form in the esophagus when blood can’t flow through the liver very well. If they break open and bleed, they’re often fatal. Her belly was huge from fluid that had collected there due to her liver failure and her legs were swollen for the same reason. She bruised easily and bled easily as clotting factors are made in the liver. She was an extremely complicated patient and had a long list of medicines that she didn’t want to take. She didn’t want to be in Seattle and she made it clear that she didn’t want to see me, even though she wouldn’t speak.
Still, her daughter loved her and wouldn’t give up on her. She brought Alvina in for multiple visits, on these I was careful to keep her medicines adjusted to try to lessen her fluid buildup. Her diet was another issue. She had allergies to some foods, she couldn’t have much salt because it made her swelling worse. Because of her esophageal varices and her jaw problems, she had to have soft foods. The list of things she couldn’t have was long, I finally came up with peanut butter as a suggestion for something that met all the criteria. I shuddered at the glare Alvina gave me then.
On her next visit, I asked Alvina what she was able to eat. She looked directly at me for a very long time, then she broke out in a crooked smile and cackled “peanut butter!” She couldn’t stop laughing at this and I started laughing with her. In that instant, Alvina and I became friends. It turned out she was able to talk after all, and was finally taking part in her care.
She knew there was no cure for her cirrhosis and that every day was precious. As we continued our visits, she and I and her daughter had long talks. Alvina wanted to go back home to take care of things there, but knew she would be far from medical care if she needed it. We discussed end of life issues and she was adamant she never wanted to be on a ventilator again. She and her daughter and I went over her advance directive in detail. This is a document that let Alvina decide what she wanted if her liver failed or if her esophageal varices bled again. She did not want CPR, she did not want to “be kept alive by machines.” She and I and her daughter signed the document and kept a copy in her chart, she kept the original with her and her daughter.
I never saw her again. I received medical records from her home reservation about a month after our last visit. She had been found at her house in a pool of blood from a massive bleed from her esophageal varices. Her family had her rushed to the local hospital where she received blood transfusions and was stabilized enough to send her to a bigger hospital in the nearest city. There she was put in the intensive care unit. She was breathing on her own, but she had blood in her lungs from her esophageal bleeding and was going into respiratory failure. Her daughter flew from Seattle to be with her. There was disagreement among family members, many of them wanted to do everything possible to keep Alvina alive at any cost. Her daughter had the advance directive we had signed and the family was made aware of this. Alvina’s doctors were able to talk with the family and let them know that these were Alvina’s wishes and that they were not abandoning her.
Alvina died with her family at her side. No tubes. No ventilator. No “machines keeping me alive.” She died with dignity and in peace, just the way she wanted to.
No one wants to think about their own death. Talking about it with family members is difficult and uncomfortable. “I’ll do it later.” Later sometimes happens sooner than you think it will. Life is uncertain.
Making out a “Living will” or an advance directive takes the burden off family and loved ones. This is especially important for elders and those with terminal illnesses, but everyone should think about and address this. No one can know your wishes, and guilt is a powerful force when someone is in the hospital. We CAN keep people alive for a very long time with ventilators and other life support devices, but this isn’t necessarily the life that many people want. Only you can decide that. Your medical provider can help you with the forms.
I saw Alvina’s daughter in a video store about 6 months after Alvina died. She cried as she hugged me, “Dr.Vainio, thank you so much for taking such good care of my mother.”
Did I say I was afraid of Alvina? I was wrong. She was a beautiful woman and I miss her. And I’m not the one who took such good care of her. That was her daughter’s doing.
Arne Vainio, M.D. is a Family Practice Physician at the Min-No-Aya-Win Human Services Clinic on the Fond du Lac Ojibwe Reservation in Northern Minnesota. He can be reached at firstname.lastname@example.org.