He knew she was angry with him.
“Whenever I come to see her, I reach out and take her hand, but she looks away.”
Husband and wife for well over 50 years, they had been through a lot. They met in another country in another time, and to hear him tell it, it almost seemed fated that they’d end up together. Since then, they’d moved many times, raised a family, supported each other through myriad illnesses. They were growing old together.
Unfortunately, “growing old together” doesn’t always work out like we hope it will. Diseases and illnesses ravage our bodies; dementia ravages our brains. She’d long ago given up on their little garden in the backyard. It was her favorite hobby, but she couldn’t manage it anymore.
She had dementia, and she weighed less than 100 pounds. Though not a result of her dementia, she was unable to eat properly and had slowly grown smaller and smaller.
She had done all the right things. She was a nurse and she knew how these things could go. She had an advanced directive filled out; not only signed and dated, but specific treatments and procedures were addressed – feeding tubes, antibiotics, tests, organ donation, resuscitation – really almost everything you can think of.
Many people designate a DPOA – Durable Power of Attorney – along with filling out an Advanced Directive form. When in a condition where making one’s own decisions is impossible, a DPOA is a person chosen by the patient (in advance of illnesses and while the patient is considered competent) to make decisions for them. The hope (for us, as healthcare workers) is that the patient has had a long, frank discussion with their chosen DPOA as to what their wishes are.
In her case, although they may have had this talk, her wishes were also explained in great detail in a written document. A document that we had a copy of in her chart. A document that her family readily provided to us.
In the condition she was admitted in, she would need IV fluids, antibiotics, x-rays and tests. She wasn’t completely unconscious, but she wasn’t very coherent either. Add in her element of dementia, and it was clear that she wasn’t able to make decisions.
Her family waited quite awhile to bring her in. They were managing her pneumonia at home until she started having trouble breathing. That is when they brought her to us.
And this is where she and I met. They only thing she would say to me is, “I want….” but would never finish the sentence. She seemed to really want whatever it was and I hope I was able to provide it with everything I tried.
Her husband came in to see her, and this is when we had our conversation. He told me that he knew she didn’t want any of this. Definitely did not want a feeding tube, but that’s the direction we were going to have to go in in order to treat her. He said that he knew she didn’t want it, but that he was her Power of Attorney, and it didn’t matter to him – he was going to ask us to give her one anyway.
It was obvious he was grieving and in denial. There was no malice, only a very matter of fact manner. And a deep underlying sadness. It appeared to me that he was simply unable to carry out that which she had painstakingly directed.
He assumed that this was the reason for her anger; the reason that she wouldn’t look at him anymore. She had trusted him not to put her through this.
I sometimes take care of patients that are clearly terminal. They often don’t have their wishes written out in a detailed manner; many people don’t even understand what we as medical professionals are capable of doing to them to keep them alive.
My patient knew.
But she chose a person who was unable to follow her wishes when the time came to actually make the heart-wrenching decisions. We assume it’s our spouse or closest family members who would be our best advocates, but sometimes that isn’t the best way to go. Of course, then you are stuck choosing someone that will have to go against your family at a most critical and emotional time. Do you know anyone strong enough to advocate for you? To make sure your wishes concerning end of life care are honored?
I very gingerly tried to get him to tell me why he would go against her wishes, but he wasn’t able to give me a straight answer. I could tell that he already missed her so much. I hope she can forgive him.
*This blog post was originally published at code blog - tales of a nurse*