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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.

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MaryBee Aug 30, 2018
Thank you joemat, I will look into this.
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Thank you fantasmagorical. I was not familiar with the Five Wishes. How wonderful that your mom had this in place at the end and that she had you to honor her wishes. Great idea.
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You do need something documented. My mom ended up in a memory care unit. And they have questioned my refusal of certain care, and I can say go back to her wishes. What I have learned is the care facility does not like the Five Wishes. I think it is because no lawyer is involved. I showed them on the back it is a legal document in most states, some require notarization. So as was mentioned in an another post is to have a POLST. This the family doctor can give you the form. ERs and ambulance services will abide by it where they may question the wording of other advanced directives. I do really like the Five Wishes because it also talks about how the person would like to be treated by family and friends, ex. Do they want visitors at the end or would they rather be just with loved ones. Also talks about funeral wishes. It gave my mom the opportunity to tell me she wanted my siblings to handle things in a manner that we remain close after her death and that she wanted her grand children to know each of them was special to her and she loved them all, equally.
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Conversations with family members are more important than Advance Directives. Step 1 is to get you MiL to think about outcomes (as Maggiebea says), not proceedures, i.e., resuscitation. What quality of life is unacceptable to her? She needs to think this through, and tell all family members he end-of-life wishes. Try playing this game of cards with her, on line. gowishcards.org. (or buy the cards).
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
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Even if you do know your MOL’s intentions, it can be very difficult if the doctors aren’t on side. I remember only too vividly witnessing a serious argument in the hospital corridor outside my mother’s room between her physician and her oncologist, with the oncologist going for resuscitation at all costs irrespective of her known wishes.

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.
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If money is not an issue, I would strongly advise you make an arrangement with an attorney (at your expense) to come visit your mother with the necessary forms to complete her advance directives. There is a lot more that should be done than simply the DNR. My attorney had different scenarios available in which I had to indicate what I would want done in particular situations. We will be adding another section in the next few months that will deal with what I want done if I develop dementia and begin to contradict the advance directives I've made when I was competent. At the same time, since it appears that your mother has not set up a POA, that could be done at the same time. Again, there are some choices to be made. While it's definitely possible to do all of these things without a lawyer, I learned that what I had done on my own was not adequate. Finally, as another writer suggested, your mother needs to have an at-home DNR set up (there are forms to do this; you put the info on the refrigerator door) so that emergency medical personnel will not have to resuscitate her against her wishes would that situation ever to occur.

I realize you cannot just spring this on your mother, but you may be able to frame this in terms of the concerns of you and your siblings, and also to indicate that you are gifting the services of a lawyer to her.
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I saved some money and used RocketLawyer.com; did did a couple other firms as well. It cost only $40. The website first asks your state as requirements vary state by state. Of course before you are able to fill out the.the paperwork, you will have to have the conversation. With my dad I simply said, It's a long way off but if something unexpected happens I want to make sure that I everyone does exactly as you want.

Good luck. Its tough to to start that conversation. 
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A starting point could be, "You know, Mom, when you went in the hospital last time, they had questions about what kind of care you wanted if you became unable to speak for yourself. Maybe we should have a talk so we all know what you want us to do. If it's put down in writing, then everyone will be sure we are telling the doctors what you want."
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.
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Quite frankly, at that age, you will not get much if any resistance from the medical staff. They are geared towards convincing people who want resuscitation to go DNR. There's no point at that age. They are in enough pain, why add a broken ribcage to that?

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.
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Tell her all of the family love her & you hope she loves the family too - it could be shown by setting up an appointment to sign these sort of things with a lawyer or a senior centre - take her to a special lunch afterwards to celebrate - tell her she can pick who will drive her so she doesn't feel it is just 1 person pushing her -

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
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Hi...I told my mother that her doctor & or the hospital requires it... they actually did require it art KAISER.
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I strongly disagree that MIL doesn't need an advanced directive. Even if you had an advance directive, and a family member disagreed with MIL's wishes to not be resuscitated, (Aunt Tilly who hasn't talked to MIL for 20 years), your MIL's wishes may not be honored. I suggest a DNR and a DNR bracelet. Also check into your state's POLST equivalent - http://polst.org/
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.
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At the PCP appointment is a fine time ... if the PCP immediately brings out a form she can fill out and sign right there, great. If the PCP doesn't, though, or if the PCP suggests she 'read it over and think about it,' I suggest you ask her to sign a Health-Care Power of Attorney or Health-Care Proxy (or whatever it's called) that makes you the Official decision-maker if she is unable to speak for herself.

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.
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Good morning RayLin, I'm so sorry for your loss. But what a great long life your husband had and a wonderful way to pass. God bless, hugs to you.
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Since your MIL has problems with the advanced directive, maybe the healthcare POA would be an easier step. The HC-POA can sign the DNR if your MIL is not able and can make those decisions usually covered by an advanced directive too.
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MACinCT is right. You don't need the advance directive. Every hospital visit you will be asked and you just keep signing the DNR form.

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.
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Countrymouse, thanks for sharing your insights, especially the suggestion to focus on outcomes rather than procedures. We will bring it up with the PCP.
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MaryBee, Part I, the upcoming PCP appointment would indeed be a very good time to raise the subject. You could, for example, say to the doctor "we've been thinking about this from time to time, but could you explain how we can get the job done and out of the way?"

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.
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Dear MaryBee,

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.
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Freqflyer, thanks for moving the question up front and Macinct, I appreciate your response since you’ve been through this.
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If you are her main spokesperson then you do not need a piece of paper. You have her answers. If more family will be involved then at some point have a family gathering when she is in her best of health and ask her opinion. Do not be afraid to have others express their wishes. I did this 15 years ago with 3 relatives that decision making would fall upon me and my brother. So far 2 have passed. We were both clear on their wishes and followed them
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MaryBell, I am moving your post back toward the front pages of the forum. Hopefully a caregiver will be able to answer your question.
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