When Maggie was diagnosed with advanced lymphoma about two weeks ago, she was told she had between three and 22 weeks to live. She told her doctors she wanted to live. They came up with a chemotherapy treatment strategy that shrank the tumor. She was discharged. The treatment program included an injection of heparin, a blood thinner. Thursday night she began to vomit blood and was hospitalized again Friday morning. They got the bleeding stopped in the ER Saturday morning and she was admitted.
Here’s the thing about end-of-life care decisions: there really is a point at which no medicine or treatment will make you well. In fact, the body does have a point-of-no-return where it cannot assimilate medicine — or even food or fluids — and trying to make it do so hastens death. This is not an abstract statement to me. I have gone through my own dying process and I am still working my way back from death’s door. I have cared for dying loved ones — I am currently providing my father end-of-life care. I know how to fight Death.
If Maggie had decided on hospice care, she would be at her brother’s home now, holding her little dog, Lightning, and her family would be coming to visit. We could surround her with flowers. The hospice team would be managing her symptoms to ensure her comfort.
Instead, Maggie is in a hospital bed and the admitting doctor is dodging her sister and brother, who have stayed by her bed the last two days. They are exhausted. Maggie’s blood pressure is sky high and she’s tachycardic. In these circumstances, these symptoms can mean the end is very near. Sister and Brother just need an honest conversation with the doctor, so they can tell the rest of the family to show up and say good-bye. Many of them are putting it off.
Maggie refuses to sign a durable healthcare power-of-attorney, which would give ONE person the right to make medical decisions for her in accordance with her wishes. Just as importantly, it would give ONE person the right to talk to the doctor and list the persons the doctor can talk to. Without the legal authority of the healthcare POA, the doctor is violating HIPAA — the patient privacy act — to talk to anyone but Maggie while Maggie can still make her own decisions. Maggie does not have the strength to cope with contending family members. Usually state law governing who gets authority for healthcare decisions when the patient no longer can do so and access to patient information puts spouses first, then parents, then adult children, then siblings. Everyone at each level has the same level of authority. Maggie has several brothers and sisters and end-of-life care decisions create disagreements and intense passion. Doctors and nurses dread this.
I think that’s why the doctor is dodging Maggie’s sister and brother. You’ve been told to rely on doctors to guide you through the end-of-life care decisions. But they have not been trained to do this. And they know that emotions run high and the encounters can be draining, or even get them sued. So the time doctors in the acute care medical system are most likely to abandon you is when you need them the most. In contrast, hospice doctors and nurses help you and your family fight the battle you’re in, rather than the one you wish you had. They will talk to you. They explain what end-of-life symptoms are. They are there for you. Your family and friends get it through their heads that their time with you is limited. When you are gone, the fact that they were able to show up for you will give them comfort and go a long toward lifting the anger and guilt that they would feel over missing their last chance to do little services and say good-bye. It’s the difference between bringing an airplane in for a smooth landing and flying until you run of gas and fall out of the sky.