Monday, September 14, 2009

More Thoughts on Advance Directives

Wisely, my grandmother never showed her medical power of attorney or my grandfather's advance directive to the hospital, recognizing that didn't need to be done yet. Had this been given to the doctor before his biopsy, he would now not be with us, even though intubation would have been temporary. I am saying this to people with disabilities now: if you give staff an advance directive saying you don't want to be revived if you're deemed to be terminal, that may end your life years and years before your time, even for younger people.

I was surprised that my grandfather had said, "no tubes," including trach, before, because a tracheostomy is not a fate worse than death. It is a shame to me that end-stage COPD patients are not told this is where they're headed and generally a decision will have to be made. When they are told about trachs, they're not given much information about it. I looked up and printed information for my grandmother on hospice (including at-home hospice), the forms of ventilation, pictures of what a trach looks like (on my friend), and how it works/the care that's needed. While I understood where things were headed, that doesn't mean they can hear it from me or would think I would understand.

I am equally surprised that he changed his mind when he was in the moment. My aunt kept saying over and over that he had always said he didn't want "tubes," overlooking what he was saying at the time. She also did not think he should be informed about the choice or asked--which is just not ethical. I think her unconscious motivation is that she's doing a lot of the caregiving and would continue to do so and she is exhausted, exhausted by sitting in the ICU with my grandmother 11 hours a day, driving my uncle to and from work and taking care of some household needs when she's not.

The doctor also asked my grandmother if she was sure, and she told the doctor, "ask him," and pointed to my grandfather, and he did. I think in ICU they have so many patients who cannot speak for themselves that sometimes doctors and nurses forget when they can--and that's terrible. I can see that someone's rights can disappear in an instant just because it's more difficult for them to communicate.

Thanks to Yanub and OSM for your comments the other night--they were extremely helpful. You were right; why were they discussing what he said in his living will when he was still lucid? Why did the nurse tell my grandmother she had some difficult decisions to make when my grandfather could speak (albeit he had difficulty making himself understood on that oxygen mask and with his dentures slipping, but he could communicate that much).

I also don't understand why physicians don't communicate more clearly about trachs, how they work, and the care required. I imagine that many more people might opt in if they understood, while others might choose otherwise. I had to explain to my sister later why he was making this decision because she did not understand and I could sense that she was aghast when my mother phoned her. To her, if not to most, life support means indefinite survival on a respirator in the hospital while unconscious.

Most of all what surprises me is how simple many advance directives are--a couple of yes/no check boxes only on my grandparents'. My own decision making would be a lot more complex and have a lot more conditionals than that. Here is a sample of an advance directive from the American Academy of Family Physicians that has a few more choices than some advance directives:
http://www.aafp.org/afp/990201ap/617.html
Check the language on artificial nutrition/hydration, for example:

I do not want artificial nutrition and hydration started if they would be the main treatments keeping me alive. If artificial nutrition and hydration are started, I want them stopped.

I don't know that I would refuse a feeding tube or rehydration if I could not take food in by other means, though I'd probably not want that not be done if I were not conscious or aware, having to be tied down, and would not live long. But dehydration or starvation would be horrible ways to go. There are children and adults walking around with feeding tubes, so I can't say I'd want to end life on that basis alone. I've seen someone express that she would, though. I wouldn't want to be intubated indefinitely but I really don't think that I'd turn down a trach.

There's just so much gray area between those fill-in-the-blanks! And what do people consider terminal, and at what point?

3 comments:

yanub said...

I'm glad you are openly discussing your family's experience in the matter of advanced directives. Few people are acquainted with anyone who needs mechanical assistance eating or breathing, so they have no real idea what they are saying yes or no to. And even fewer people seem to understand how little respect there is for the lives those with disabilities and of the elderly.

I hope your aunt is able to get some respite herself, since she is exhausted to the point of callousness. I don't really blame caregivers for reaching their limit after months and even years of wearing themselves out. This is why there needs to be well-funded in-home care, so that no one individual be ground down by the burden of care.

FridaWrites said...
This comment has been removed by the author.
FridaWrites said...

Thanks--I wrongly thought advance directives were a bit more complex and would clear up any questions about someone's care. Both with my friend and my grandfather, little information is given about the long-term implications of a vent. She asked shortly after why insurance pays for the surgery but not the means for her to live afterward--refusing some major medical bills and in-home care. Most of her friends/family have made frequent donations of $35 to support 1 hour of in-home care when her husband is not working from home and other family/friends aren't there. Yes, my aunt needs more breaks/to get others to take turns but insists on doing more herself for reasons I won't go into--but it's terrible more information isn't easily available upfront about what home care or hospice care will or will not be paid for.