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Have You Completed An Advance Directive?
Several years back, when I was hospitalized, my medical team suggested that I complete some type of Advance Directives, Medical Power of Attorney, and other legal paperwork. A case manager came in from the hospital and discussed several options with my family and me. She left some informational pamphlets for us to review. After looking them over, I looked into an Advance Directive. This was simple, and I downloaded it from the state website. Most states should offer this online form. I took several days to look it over and fill out before heading to a Notary to sign and make copies.
Now, I have copies on file at the hospital that I go to and at my PCP’s office. I need to get copies to my other specialists. But, I also have copies with my current medication list in an envelope marked “Emergency Info.” This is located at my front entryway. I have copies of my medications in my wallet but not copies of these forms.
Although this is a sensitive and emotional topic, it is important. I credit my work in hospice care before PH with helping me most in completing mine. I would not want to leave my family with such difficult decisions. This is my why to complete mine. That and a big nudge from my medical team. Taking these steps is important for those of us of all ages.
Have you thought about or completed any paperwork to make your choices known in case of an emergency? I read an article last week discussing the importance of planning ahead for an emergency. This was meant for well-bodied individuals as well as those like us with PH and chronic illnesses. Sadly. I cannot seem to locate that one. If I do, I will certainly share it. It was helpful for those with small children. The NIH offers some education and tips on this sensitive topic.
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12 Replies
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I believe this is a crucial topic that often goes unaddressed. But let me tell you, these tough conversations are necessary. They are the key to protecting yourself and your loved ones in the future.
Trust me, I’ve not only communicated my needs and desires with my hubby and daughter, but I’ve also put them down in writing. My doctors even have a copy on file.In her enlightening column, my fellow PH columnist Karen Schultz shares a candid and eye-opening discussion with her husband, Tim, as he opens up about his wishes. You won’t want to miss it! Just click on the link below to dive into the conversation.
<b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>https://pulmonaryhypertensionnews.com/columns/tough-conversations-about-pah-can-become-defining-moments/So, have you taken the time to prepare an Advance Directive or discuss end-of-life care? I’d love to hear your thoughts on these difficult discussions.
pulmonaryhypertensionnews.com
Tough conversations about PAH can become defining moments
Columnist Karen Schultz reflects on the tough conversations she had with her husband about his end-of-life wishes after his PAH diagnosis.
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Yes I have a advanced directive. I also have made up a folder with VA forms for benifits through the VA.. I also put toghter a folder with passwords and other stuff my wife might need. It is kind of a morbid subject, but needed. I have also downloaded all my forms prefilled out to a flash drive and it’s in the safe. My daughter knows were my stuff is in case my wife is out of it
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Hi @Erik, kudos to you for going a step above with planning. I agree it’s never a fun discussion. However, our loved ones should have what they need at such a difficult time. Knowing you have planned will offer your family that little piece of peace. Plus, it’s great to have our wishes known.
Your folders for passwords and VA paperwork tell me you are pretty organized. Was this credit to your military service?
Thanks for sharing. Your mention of passwords reminds me of when I paid all the bills, etc. I was in the hospital and out of it, and my poor hubby had to guess and try to pay online using my iPad since I had most bill sites to remember passwords. Since this time, my hubby has taken over the checkbook, bills, etc.
Does anyone else have these things saved and in a place where your loved ones will easily find them when needed? Let’s talk about this!
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@jen-cueva this is timely for me as my husband and I are going to update our wills next week. The last time I was asked about an advance directive, I didn’t know what to say. I watched my dad spend his last 6 weeks in ICU and it was a horrible experience. But still I feel like I’m not a medical professional so I don’t know enough about all the possible medical situations that could face me to say what I would want and in what circumstances. What kinds of things did you put in your AD?
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Hi, @Cathy Brown. It is excellent news that you and our husband are working on your Wills and Advance Directives. You are not alone; this is all confusing and frightening because of the unknown.
Like you, I’ve watched my patients and loved ones struggle when the time comes. Either they have nothing in place, or the family, like most, wants to do everything they can to keep their loved ones alive. But that’s selfish and we must always think about what that person would want. And when it’s time to decide in emergenvcy sitauations, this stress weighs heavy on the other loved ones.
This is why I always try and stay prepared because we never know. I’ve made my desires known for years. I also think trying to find a preparation tool that may help you as you ansewer the questions. I did that this year and it makes me think about more possible decisions that may come up. I’ll link the one my medical team suggrested since I had tio redo miune for California.
https://prepareforyourcare.org/en/advance-directive
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My answer is yes I have an advanced directive. It links back to my Estate Management. I had it placed on file with the Arizona government and I keep a copy of that reference for anyone that needs it. I also completed a ‘do not resuciate’ (DNR) directive that is kept in our house.
My wife has an AD and an organ donation directive. I rather think that no one sould get any of my organs. 😇
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Hi, @Randolph Reynolds; you’ve done an exceptional job at planning. Was this when palliative care came in, or did you have this in place already? If you need any adoptive children for that Estate planning, I would love to be adopted. Hehe.😉
You did an excellent job keeping this on file and having extra copies at home.
You cracked me up with the organ donation comment.
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I would like to bring this topic to the forefront again since it is something that has been asked of me recently, “Do my parents have an advance directive”? The answer is no because 1# My mom doesn’t take kindly to thinking about anything that might mean giving someone else control and 2# They really don’t understand the concept of an advance directive.
Have you had to discuss this with an elderly loved one and if so, how did you approach the topic and get decisions made without leading them? I ask my parents what their wishes are and they ask me what they should be or they just don’t want to discuss it at all.
@jen-cueva thank you for sharing where you can find an advanced directive on-line to fill out. I am going to find and print one out for my parents, and me for that matter!
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Hi @Colleen, it wasn’t until my dad lost his wife about eight years ago that he was ready to talk about this. Being the “Daddy’s girl,” I didn’t want to talk about this, but I also knew how things would go if there weren’t anything in place.
While I was staying with my dad and planning my late stepmother’s services, etc, we decided to do his then, too. I’m grateful he did because he has three girls and two sons. We did his Will and Advanced Directive. He first thought he could tell me, and I could write it all down for him. But finally, we made it to his attorney’s office to finalize his wishes.
There’s NEVER a good time to discuss these matters. But reminding our loved ones this is to be sure their wishes are made known, and no one has to make any last-minute complicated decisions when needed.
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I agree @jen-cueva there is never a good time to discuss these matters but they are so important!
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I remember when my dad was in the ICU and had been for some time, it comforted my mom to remember him talking about prolonging life too long. He said that would be “just keeping him out of heaven,” and that gave her peace. In the end, he died without us having to make any difficult decisions.
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Hi, @Cathy Brown; it’s lovely that your parents discussed their wishes, even if they weren’t written. I’m confident that helped your mom and your family feel better about the decisions y’all had to make when he was in ICU.
Your dad’s comment about “keeping him out of heaven ” is a lovely way to think about it, especially when it’s a loved one. Letting a loved one go is never easy, but knowing you respect their wishes offers peace.
Thanks for sharing personal details that offer us something to think about. 🤗
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