cothrangirl3 Asked October 2017
Can anyone suggest a way to broach the subject about changing mom's advanced directive in an easy way that may help get my sister on board?
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My Mom is full code at the present time. I am her legal guardian. She has Alzheimer's and it is progressing. She can still communicate but her dementia is pretty severe at times. I feel she should be a DNR. It's common knowledge that if she were to be resuscitated that her capacities would be diminished. The problem is one of my siblings, I don't feel comfortable changing mom's advanced directives without everyone agreeing and she does not. Last time the subject was mentioned at a care conference she told everyone that the nursing home and I were conspiring to change Moms wishes so we could just let her die. Can anyone suggest a way to broach the subject in an easy way that may help get my sister on board?
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An advance directive, strictly speaking, is a document drawn up by a person of sound mind giving a statement of her (necessarily hypothetical) wishes regarding her medical treatment in future. I wish/do not wish to undergo CPR. I wish/do not wish to have PEG feeding. I wish/do not wish to receive chemotherapy. And so on.
When you comment that your mother wishes to be resuscitated and is still capable of communicating but no longer considered competent to make such decisions, it makes me wonder if you are consulting a formal directive or if you are actually talking about adapting her care plan, which is a different kettle of fish.
Is there a written, signed advance directive?
Also - did your mother appoint you as her guardian or was this a court judgement? If your mother did not appoint you, i.e. entrust you with her care herself, and she is expressing a wish to be kept going in spite of medical advice to the contrary, hadn't you better err on the side of caution? - as indeed you are doing by attempting to create a consensus, of course. I'm sorry it's proving so problematic.
Did your sister contest your guardianship or something?
I was surprised when my niece who's a nurse told me this, but as she says, tv programs show CPR being done w/o cracking ribs, but medical people who've performed it know what the risks are.
Doctors also used that to frighten my father the last time he was in the hospital. To them, cracked ribs are a side effect of CPR.
For an older woman with Alzheimer's, I think that must be horrendous - to go through such trauma and not be able to understand why.
Or have you inferred this from your sister's insistence that your mother's medical directive must be taken into account as it stands?
To repeat, you don't need a DNR to advocate your mother's best interests. Do you have any reason to think that resuscitation is likely to come into the picture?
It does sound as if your sister is having a hard time accepting that your mother will sooner or later reach the end-of-life stages and, ultimately, be beyond medical help of any sort. It's also not unusual for people to read too many lurid press accounts of old people being "thrown on the scrapheap", denied medical treatment, or hurried off the mortal coil; and they then get very combative on their loved ones' behalf with good intentions but not enough actual information about the complex issues at work.
Try not to let it become a source of conflict between the two of you. I don't suppose you're finding it much fun, either, and getting into emotional hypothetical debates with someone who isn't dealing with it on the front line is going to make it even rougher when you have to make the real decisions.
Now I'm seeing my father slow down, yet still challenge himself while being cautious, but the emotional pain increases as he ages and becomes more and more emaciated.
While I was ready to accuse the SNF of not properly initiating CPR when my mother had what was considered a fatal cardiac arrest, in retrospect I'm glad they didn't as the life she would have had wouldn't have been living at all. I still miss her very much, but I'm glad that she was spared the agonizingly emotional and physical painful last years of life.
My thoughts on losing my sister similarly changed. With widespread metastasis, her qualify of life was abysmal for the last several months of her life. She was in agony, as were my father and I watching this happen to her and knowing that it was fruitless to stop the spread of cancer.
In retrospect, I wish I had known about hospice and brought that care in; it would have spared her some horrible experiences.
My father and I have discussed end of life; I've given it plenty of thought for myself. Keeping someone alive just for the sake of being alive not only prolongs the pain and suffering of that person, it makes it agonizing for the family, including post-death self recrimination for not allowing the person to pass and be relieved of his or her misery.
We are all going to die at some point, and making it as easy and comfortable as possible is better than dragging it out b/c someone is not prepared to lose a person whose life is no longer worth living.
There's a book that WindyRidge and others have cited as recommended reading. I don't remember the name but I'm guessing others do and would offer it if they read my post. It might help your sister come to terms with your mother's physical state.
Unfortunately, as we've experienced, sometimes experience is in fact the best teacher.
Do you think you sister could benefit from advice from a geriatric medical professional, who as an independent person can explain how unwise it would be to prolong your mother's last months, days and/or weeks? Nurses can also explain this well, having seen much more of these situations than we as individuals have.
Is your mom on palliative care or hospice care? Is she eligible for either of those?
In our case, we arranged for the NH to call us before they transported to a hospital, no matter what the issue.
Does the NH itself have the capacity to do a "full code" or would they have to transport?
1. The advance directive. No you can't change it! That's the whole point of your mother having expressed her wishes: that once she becomes incapacitated, you have a point of reference from when she was in full possession of her faculties. You can't second-guess her and decide she didn't mean what she said at the time.
2. Her best interests as a patient with advanced Alzheimer's Disease. This is a clinical judgment which your mother's health care proxy should be making in collaboration with your mother's doctors and other health care professionals. If resuscitation would be a futile measure causing onerous and prolonged suffering to a person, it needn't be done and you don't need a DNR to reject it.
Is your mother's healthcare directive directly at odds with current medical advice? Unless it is, this battle with sister may be one you don't need to have.
Yours is a hard situation but you’ll get through it. I hope you and your sibling work it out.
I applaud you for wanting your sister to be on board... She may just need a bit more time to come to terms with it. All these decisions are tough to make. Discuss what the outcome of life support will be. Discuss that mom will die... We all will.... What quality of life is still there for her?
I look a lot at Mom's quality of life. She is stage 7 Alzheimer's, totally incontinent, can't walk, can't sit up unassisted, mostly just verbally rambles (but has moments where she makes a statement that fits the situation), she is developing a delayed swallow... Not too much left. But then I see her smile at the grandkids, say hi to my step dad, tells me she loves me, reacts to something we are talking about, and I think she is still in there and wants to stay with us for now. She will remain a DNR and will never have a feeding tube, but as long as she still wants to eat, I will feed her. We live having her with us and while we can will not do anything to force her to stay, we will also not hurry her away. We each have to make the best decisions we can for our loved ones based on our knowledge of them and no guilt!