"He did what?"
"Ms. Miller's son Bruce punched his sister in the face!" the breathless social worker called to tell me. "A nurse called the police; they arrested Bruce and rushed his sister Tracy to the emergency room. At least she was already in the hospital! He was released and she's patched up. They've settled down now and he's promised to behave. Can you come right away? Oh, and I should warn you, he's a puncher, but she's a screecher."
Once reunited, the siblings immediately reopened their argument about whether their 88-year-old mother, who was dying of dementia and refusing all food and fluids, should receive hospice care.
"The last one in creates the biggest stink," quipped a geriatric doctor. Bruce had arrived from a distant state only the day before. Like many out-of-towners who haven't seen a loved one for a long time, the shock of viewing a shrunken body or the patient's inability to communicate with or even recognize the visitor prompts demands like, "Do something! I want to talk to the doctor! or "Can't you (stupid people) see she's dying?"
Bruce was true to form. "Hospice is a death sentence. Hospice kills people," he declared angrily. "The nurses should be feeding our mother and helping her get better!"
Tracy, on the other hand, had been present at her mother's bedside every day. Over a period of weeks, observing her steady decline, she came to understand and accept that her mother was suffering and had no reasonable hope for recovery. "Well, I think we should get hospice so she can be comfortable and die naturally," Tracy screeched with volume equal to her brother's.
The basic disagreement between these siblings is one repeated all too often: an elderly parent, ill for years, has never completed an advance directive. The parent may not even know what an advance directive is. Neither they nor their children ever considered a conversation about end-of-life care wishes. Then comes a stroke or some disease that incapacitates them mentally. From then on, it's guesswork for the family. Matters become more complicated when loved ones live far away, there is a history of poor communication, or family feuds divide siblings into warring camps.
"Bruce, it's time to let Mom go," Tracy pleaded.
"You say let her go; I say that's killing her. You always were bossy!" he glowered. It was clear they disagreed about everything, not only about what each believed their mother would want. Bruce's face grew redder as Tracy's screech climbed another decibel. "You always were a bully!" she responded.
We were getting nowhere fast. Hoping to defuse the growing tension and find some common ground for negotiation, I took a deep breath and said, "Do you really want to continue fighting over your mother's body? You may never agree, but could each of you rise above yourself, put your disagreements on hold, come together, and focus on her needs?"
"You could spend this little bit of precious time with her, hold her hand, talk to her, and tell her how much you love her. Speak of your happy memories; thank her for all she's done. Even if she doesn't seem to hear you, she knows you are with her. Her awareness is greater than her ability to respond."
Noting that Bruce was struggling to rethink his position, I asked, "What do you think your mother would say if she could sit up in bed right now and speak to you?" Tracy, who had been admirably silent for a few minutes, broke in before Bruce had a chance to reply.
"I know," she said. "I think she'd say, 'Would you want to live like this?' and she'd yell like when we were kids, 'All right, Miss Bigmouth and Mr. Muscles, stop fighting, or I'll tell your father when he gets home!'" Then in a quieter voice, she added, "I think Mom would say, 'Why would I want to continue like this, flat on my back, unable to move, to walk or talk, with no reasonable hope that I'll get better? Please keep me comfortable, love me, let me go.'"
Bruce stood up to leave. "I need more time to think about this. Let's meet tomorrow morning and we'll settle things," he said in a thoughtful tone.
I'd like to tell you that Bruce returned to agree to hospice care for his mother, but Mrs. Miller died that night. In retrospect I think Bruce was shocked and dismayed to see his mother's decline, her tenuous hold on life, and her inability to recognize his presence. Bruce fell back into a familiar pattern of disagreeing with anything his sister wanted.
Sometimes such deathbed battles are not so much about the dying person's wishes as they are a reenactment of old resentments and ancient rivalries. Bitter fights arise when adults under pressure regress to childhood sibling roles: the smart one, the dumb one, the bossy one, the martyr, the peacemaker. In the emotional turmoil of the dying time, rather than address the issue, they blame each other, the doctors, the nursing staff, or hospice for not doing more.
Without prior conversations with everyone who may be in the patient's room at the end of life, including out-of-town relatives, it is unrealistic to expect families to come to a quick, unified decision that satisfies everyone.
The best way to avoid such outcomes when people can no longer state their own wishes is for every competent adult to assume personal responsibility to make decisions and open a conversation with anyone likely to be in the room at the end of life. The next step is to complete, then regularly review advance directives. Review these documents on birthdays and after a major life event such as a serious illness, marriage, divorce, or death. Identify and educate at least two healthcare agents about your wishes, and give copies of the directive to your doctors, lawyer, agents, and anyone likely to be in the room.
Caring Connections, a program of the National Hospice and Palliative Care Organization, makes free advance directives available online with instructions on how to complete them at www.caringinfo.org. See also https://mydirectives.com.
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