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No resuscitation request and end of life guide for family and responders


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Not wanting to be morbid but recent events in my life saw me in hospital amongst patients that were in critical care. While none of us want to think of the inevitable when it does come how do we lessen the stress on our love ones and medical staff on what our wishes are? I witnessed first hand the amount of pressure put on the patient and the family by doctors of what their wishes would be when they faced that decision. Patient had suffered a major heart attack with failing kidneys. Heart surgery was successful but dialysis was not recommended. Doctors were professional but had a point to make, I wished I didn’t have to witness the process.

 For me the response is simple, quality of life not length of life. I have let my family know my preference now, at 61 I still hope I have a few good years left but you never know. I encourage you to have the conversation now, be strong in your decision and be at peace with your god if you have one. Now back to living life to the full and a change to wearing a helmet for future pursuits with higher risk than normal

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Here in the US we use a DNR and Living Will to lay out our wishes. You entrust these documents to someone who will speak for us if we are incapacitated.
It is important that the person you give that responsibility will follow your instructions. My Mother gave me that power as she didn't trust my Sister not to cave to pressure from healthcare professionals who had a different take on end of life.

Then again, throughout her life Mom used to say, "If I get old and incapable, take me out in a field and shoot me!"
It was not lost on me when in her 80's she sold all of my Father's shotguns.

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Talk to your family and legally designate a decision maker. Never assume they will know or even be swayed by an obscure relative

tattooing DNR on chest does not work

Do a living will. Importantly spell it out. Most say if no chance then stop. Almost everyone has a chance. Put time limits. Have it easily available

Progressing on ventilator or regressing, medication codes as opposed to compressions

it would make the staffs life so much easier also. If we are talking about it it is heading that way usually.

most of use to not want to inflict pain by breaking ribs and wish we could let nature happen peacefully

Families feel guilty about not doing everything

talk beforehand

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Of course, YMMV, but at least in Washington State, we have a form called a POLST (Physician's Order re Life Sustaining Treatment, IIRC) that is signed by a physician and directs treatment, or withholding thereof.

I do a lot of work on Living Wills (among other EP documents) and we've found that the directives in Living Wills and Healthcare Powers of Attorney are often not very well received nor followed by healthcare providers. Likewise, the Attorney-in-Fact's directions regarding withholding treatment.

The best way to avoid potential problems (and what we advise our clients) is to have HCPOA, the Living Will (or Healthcare Directive), AND the POLST. The POLST is kept in the home, usually on the refrigerator, and is usually followed even by EMTs.

Again, YMMV, and consult with your physician and attorney.

And please, please, please let your family know your wishes so they don't try to interfere. That's a horrible time for family conflict, and the only winners are the attorneys.

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Also have living will/power of attorney easily found in home. Recently very elderly distant relative died comfortably surrounded by family at home. EMS was notified per rules and they were getting ready to do CPR when all the very adult grandkids had to stop them

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Pop used to say "nobody wants to be 100 till they're 99"................that said quality of life is a serious issue but one that is highly variable person to person. Studies show us that some people with catastrophic medical conditions even those paralyzed for a lifetime except for eye movement report a high quality of life. So how do you predict what your feelings will be on that question? I mean almost no-one thinks a persistent vegetative state would be desirable so setting that aside.............what exactly do you see as those triggers? Pain? How much pain? Wheelchair or unable to perform daily activities and recreation you desire? Then to complicate the question, what you think is your threshold in a healthy moment of consideration with no real decision staring you in the face may be different than the actual question when facing a serious medical condition. So...............as one who has faced hat question with others, specifically parents and spouse, and helped them through that journey and now face it for myself as well I can tell you how I/we approached it.

We discussed at length and in detail. EXACTLY how limited a life do I want to live. Under what circumstances would I desire my medical decision maker wait out a recovery or terminate my care. While you can outline many of those concepts in a written health care directive and give it the force of your will legally....the actual decisions and possible scenarios are so unbelievably complex and varied that you cannot list all possibilities. Mrs PB and I (both having lost parents and long married spouses all to prolonged disease) approached ours with a written health care directive but far more importantly, hours of discussion about those possible situations. Detailed discussions about the specifics of our thoughts and desires in as many situations as we could contemplate. The health care directive gives the decision making power to each of us but deliberately very broadly vesting complete judgement to each other based on those honest and detailed discussions. Then we provided an overview to each of our families. Far less detail than that we share with each other but enough to make two things clear 1) we have thought about it and have charted our course EXACTLY as we want it.....and 2) we each are the single legal, moral and loving decision maker for the other. One person and one person alone.

Lastly, unless the medical event is catastrophic and sudden........as the condition worsens a revisit "how you doing, what's your view on our agreements" is occasionally in order. 

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Oh..........so far as DNR instructions and wishes for first responders, I cannot tell you how often at the time family thinks the end is near that the reality of the loved one's condition is such that they call 911 anyway. It was not at all uncommon a situation I encountered during my time on the rescue. A further complication is that a patient may be a DNR but that does not mean they have to be in extreme pain or short of breath or any number of really awful things that are not going to be the fatal event. Sorting that out can be very hard for non-medical family. In those situations a hospice nurse on the phone can be helpful sorting that out if the patient is home on hospice care. If in doubt, call 911. We were often helpful in sorting all that out for families. Make sure the health care directive and/or DNR is available when you call. Formal programs to get the "paperwork right" exist in most states now but may vary so a chat with the Doctor/Hospice folks or if in doubt drop by the nearest firehouse and ask. You'll get pointed in the right direction.

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As already stated. COMMUNICATION.

Sit with the vested parties and come to an agreement. Get it in writing. If the time is drawing near, keep the relevant documents on the fridge in an envelope. 

 

We ran into a DNR scenario on a recent road trip to visit family. BIL had a medical event and and was right on the verge of needing to be put on a ventilator. He has a DNR. Wife states to honor his wishes. We explain that this particular medical event is recoverable and that he had a high likelihood of coming back of the ventilator in a day or two. Which he did. He was discharged 3 days later. They are very nice, simple folk, who didn't understand how the medical system works. Had we not been there, we would have been attending a funeral. It's important to have clear communication.

 

WL

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On 10/14/2021 at 6:46 PM, burndoc said:

Talk to your family and legally designate a decision maker. Never assume they will know or even be swayed by an obscure relative

tattooing DNR on chest does not work

Do a living will. Importantly spell it out. Most say if no chance then stop. Almost everyone has a chance. Put time limits. Have it easily available

Progressing on ventilator or regressing, medication codes as opposed to compressions

it would make the staffs life so much easier also. If we are talking about it it is heading that way usually.

most of use to not want to inflict pain by breaking ribs and wish we could let nature happen peacefully

Families feel guilty about not doing everything

talk beforehand

I had a friend ignore his Aunt's DNR and had the doctor's keep her alive, in pain, in a hospital bed for something like 6 months. It wasn't my place to comment, but it changed the way I looked at him from that point forward. I don't understand ignoring someone's written desires.

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Dad went into hospice 10 days ago. In the last 6 weeks he fell, hit his head, had a brain bleed, followed a day later with cardiac arrest. A pacemaker soon followed. 
 

He has been so focused trying not too die that he never prepared for his ultimate demise. Now that he has finally accepted that he is dying he can concentrate on living his final days as best he can. 

If we forced the issue with his medical directive, he wouldn’t be here now. Trusting family and appointed personnel representatives to know when to pull the plug is the hardest thing anyone could do…

I fear for that day. 

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I watched both parents wither away as the "hospital" hid behind HIPPA laws until one day, for each, they "discovered" I was allowed to know their medical condition (time for hospice care, less than a month to live, etc.). Things got a  bit 'testy' when I stated I wanted to have tat "discovery" discussion and the charts read back to the hospital administrator.

No outcome changed, but hopefully other families had better outcomes.

Best advice I ever received:

"DOCTOR, WITH ALL HONESTY, IS THIS WHAT YOU WOULD ORDER THE TREATMENT FOR YOUR (_______ FAMILY MEMBER) BE? First one to speak loses. First MD to deflect loses HARD.

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Wow!  Have not thought about this since we had living wills and DNR papers drawn up some 30 years ago.  We are both still healthy at 66 and 71, but need to dust these documents off, and make sure that everyone in the family, mainly our two daughters understand our wishes, for when that day comes, hopefully a long ways down the road.  Thanks Crazy Horse for starting this thread!  I just retired from the rat race on Friday, but consider it a matriculation to becoming full time employed by the Missus, and two daughters and their SO's.......

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13 hours ago, Borax Johnson said:

I watched both parents wither away as the "hospital" hid behind HIPPA laws until one day, for each, they "discovered" I was allowed to know their medical condition (time for hospice care, less than a month to live, etc.). Things got a  bit 'testy' when I stated I wanted to have tat "discovery" discussion and the charts read back to the hospital administrator.

No outcome changed, but hopefully other families had better outcomes.

Best advice I ever received:

"DOCTOR, WITH ALL HONESTY, IS THIS WHAT YOU WOULD ORDER THE TREATMENT FOR YOUR (_______ FAMILY MEMBER) BE? First one to speak loses. First MD to deflect loses HARD.

In all honesty. I like to discuss with as many interested parties as possible. Decreases confusion and mistrust. Hate HIPAA restrictions. Had a lady who didn’t want us to call family as she was getting bad then family was mad at us when we called after she went down hill. Our hands are tied for stupid reasons sometimes

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DNR is usually not enough especially if your not conscious. The hospital will keep you alive for fear of lawsuits and to make as much money as possible (in the USA). DNR only comes into play if you code/arrest etc. Discuss with your spouse/kids tell them what you want and give them a durable power of attorney for medical choices that lays out the choices they are allowed to make for you if not conscious  not just a regular one. The convos are hard but needed and everyone gets to have a good cry and agree. 

I went through this last year when I had a cardiac event and was in a coma for a month. Then got the joy of learning to walk and wipe my ass again. Upon release I found out my dad adopted me when he got married to my mom after getting her pregnant (I am like 95% sure) with my little brother. Turns out I had a inherited heart valve defect from bio-dad that I didn't know about because my mom wanted all of this to be secret. Turns out mom was a bit of a strumpet and I have an older sister who was raised as my cousin by my uncle and aunt. And the story that dad got disowned because he married a catholic girl is all bullshit he got disowned for marrying an unwed mother back when that was more of an issue in certain circles than it is today. Also mom didn't tell me any of this before my dad died so I never had the chance to thank him for taking me on as his own when I knew what went into having and raising kids. I found out about this from another cousin and finding the adoption papers when my mom got sick. I am still working through that anger. Since mom now has dementia I really can't tell her about what she took from me because she will not remember it in 15 minutes, though I do switch off NCIS reruns on her whenever I feel the need to express my anger.

 

So to recap:

  • durable power of attorney = good
  • mom = bad
  • dad = good
  • whole life based on a lie = bad
  • heart valve replaced by a bovine valve = good
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Went through this recently with my mother. She was able to pass somewhat peacefully at her sister's home with the assistance of a hospice nurse. The road to get there was longer than I think any of us would have liked, but it gave me an opportunity to book it across the country and see her one last time. Being outside of a hospital environment was positive and allowed for a bit more freedom. My sister and I get along, so there wasn't any argument, but we had things documented and reviewed by an attorney to make sure we weren't taking any missteps.

Most of my first responder training (WFR/WEMT/lifeguarding/SAR) covered ignoring DNR in the environments we work in since it's rarely presented in a legally valid way and could get you into hot water. Once you're in definitive care the calculus changes.

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