My mother in law, 93, has had several ER visits, a hospitalization with surgery and a stint at rehab so far this year. Each time she is asked if she has Advance Directives and she always says she does not want to be resuscitated, but we don’t have a formal document. Once in the ER, when they kept her overnight, a geriatric NP brought in a DNR form which my mother in law signed. It traveled with her up to the hospital room but apparently was only good for that one admission. My MiL is adamant about not wanting to be resuscitated, but I know there are other medical interventions to weigh in on in Advance Directives, like antibiotics, IV fluids, feeding tubes. I mentioned it to her one time but she seemed overwhelmed and merely stuck to her one request for DNR. When she had an outpatient procedure recently, the admission nurse asked about Advance Directives and when my MiL claimed No Resuscitation, the nurse said it doesn’t count if you don’t have a legal document. So- we’ve been “meaning to get around to it”, but dear MiL only mentions such things when she is sick or in some sort of medical crisis, which is a terrible time to bring out forms and documents, then when she is feeling better, that also seems like a bad time to bring up end of life choices. I’m probably in some sort of avoidance mode. But I welcome advice from those who have already dealt with this. She has an appt with her PCP in a couple of weeks and that seems like a good time to address the issue. I just want to be prepared. Thanks in advance.
With my grandmother they had a lawyer come to her nursing home to fill out the paperwork. I think all her kids were with her. Good of you to look out for her and her interests.
My mother's GP responded to this kind of request by printing off a good, clear leaflet for mother to read in her own time; he stopped short of recommending she get on with it, which he felt would put pressure on her and make her depressed; and he declined to put the Community DNACPR instruction* in place until some months later.
In terms of getting down to the nitty-gritty of IV feeding no, antibiotics yes etc etc etc - you might do better to go for outcomes rather than procedures. So, for example, MIL might like to state that should she experience a health event that does not give her a realistic chance of substantial recovery, she wishes to receive palliative care only; or something like that. If you attempt to be too prescriptive you're begging for trouble in the shape of something completely unanticipated which then refuses to fit into the boxes you've so carefully put together.
But - Part II - you can just let this be. Relax. If it gets done, good, it will be helpful, everyone will have guidelines to follow. But if it doesn't get done by the time the time comes, your mother and her doctors and her family between them will still make decisions in her best interests, and that will be fine as far as the process can ever be fine. It won't make *enough* difference to be worth a painful struggle, is what I mean.
*In the NHS there is a greater onus on clinicians to judge whether interventions are justifiable in a patient's interests or not. So PCPs/GPs can issue a "Do Not Attempt CardioPulmonary Resuscitation" notice which they keep on file, with a copy kept in the patient's home for reference by any health care professionals attending, such as nurses and paramedics. They wouldn't do this without discussion! - but it does mean that they can avoid forcing people to face up to issues they may understandably prefer not to think about.
My DH passed last night. He didn't sign the DNR but I did when he went downhill on Thursday. We have no living wills and managed just fine. He passed at 96 yrs, peacefully in his sleep.
I'm glad she has been able to sign the in-hospital DNR each time, but the day may come when she can't. Then, unless you are physically present to stop them, someone will likely start CPR first and ask you about it later.
The best Advance Directives these days focus on Outcomes rather than Procedures, because events have a way of not fitting the check-boxes.
For example, my mom, 89 and frail, was still living at home with the help of my brother. She was absolutely clear that she didn't want to be hospitalized ever again, etc. But then she fell and cut her scalp (which of course bled like crazy) while knocking over the bedside commode. My brother persuaded her to go to the ER for the wound to be cleaned and stitched, so she wouldn't die of a preventable infection. She was afraid to go -- what if she had another stroke? then they would insist on admitting her and starting aggressive treatment which she didn't want -- but finally she agreed, with her Health-Care Proxy document in hand and my brother (the PoA) by her side. The hospital agreed that if her health-care proxy was there they could abide by her wishes.
The go wish card game can get the ball rolling - http://www.gowish.org/gowish/gowish.html
The conversation project https://theconversationproject.org/starter-kits/
has many good suggestions for initiating end of life discussions.
Her Dr's also set her up with a Five wishes, It's a legal advanced directive here in Florida and in many, many other states. What I like about the Five Wishes, is that it's easy to understand language, it explains what each thing is and you can cross out what you don't want and write down what you do want. In a couple of states it has be notarized but here in Florida, we just needed two non blood witnesses to sign and it's completely legal. Google Five Wishes and you will find much more information.
This will allow her wishes to be made the highest priority the family can do - have her think about what else like pain meds etc she would like/not like & even if there is no form for that write it out and have her sign it - then thank her for her courage to look at things clearly & that it one of the most loving things she could do for the family - maybe other family members do it at same time [to paraphrase ... a family that does medical directives together stays together]
Make sure everyone is aware & even have several copies made so that whoever takes her to hospital will have one on hand - this is best done when no crisis is looming
Everytime they ask me at the hospital, I say DNR. They all just nod and occasionally say that's the best choice. So unless you have a family member there screaming to do all they can, there won't be an issue.
Now where it is a problem is if you call 911. The EMTs are required to resuscitate unless ordered otherwise. Even a advanced health care directive won't stop that. You need to have a POLST form. That's a medical order and not just a request like a heath care directive. They have to follow that.
If you feel the necessity of guilting her into it: "We don't want to have to wonder if we are making the choice you would want, especially if we're not sure and someone else disagrees with us." That could be family, medical professionals, etc.
When she is visiting her PCP, they will probably be happy to help.
Good luck. Its tough to to start that conversation.
Advanced Care Directives differ in different places. Where I am, they now cover pages and pages of complex decisions. However you don’t have to fill in all those pages. You can put in the beginning ‘not to be resuscitated’, nominate who can make other decisions, and cross the rest out. The details are for people who really want to be specific. Cynics would say that most of the medical profession is quite happy that they discourage people from making their own decisions because the form looks too intimidating. My mother’s form was ‘invalid’ at the relevant time because we had previous legislation that was challenged and overturned courtesy of the medical profession and the Catholic church. It's at least better now.
Check that 'simple lines' are the same where you are, and have another try.
Secondly, she needs to designate someone to speak for her should she not be able to (power of attorney for health care). This means an advance directive is necessary, properly executed for her state. In it, she can exclude anyone that doesn't agree with her, based on the conversations. I disagree with Countrymouse. DON'T LET THINGS BE.
There are on line resources for getting the conversations started (i.e., the conversationproject.org).
Bill finalexodus.org
finalexodus.org