Hospitalization

My goal is to never go to the hospital.

I don’t have any reason to believe that any professionals in my local or regional hospital systems know anything about my medical conditions. And the exertion and stress of such a trip would be more than my body could handle. Those are significant concerns that orient my brain in the direction of not seeking help. But unexpected things can happen, and I do my best to prepare for that possibility. Here are some things I have done to prepare for that.

Brainstorming why I might end up in the hospital

• An accident like a bone break
• A major cardiac event
• Extreme dehydration
• COVID
• Needing surgery
• Something else I can’t yet imagine

In most of those cases, I would be the one contacting emergency services or interfacing with the hospital.

 

 

The most basic of information

I have a 1 page summary document of my most critical health information and those phone numbers posted in my kitchen and shared with others. While it is more geared towards disaster evacuation, I do have a bugout bag packed and ready to go. Some of what is in it would be useful, including much of the documentation I discuss below. 

Support team and health care proxy

My next move would always be to contact my health care proxy and my primary care doctor. My hope is that my doctor would be moderately knowledgeable and reasonably  good at interfacing with the hospital. But I like to plan for the worst case scenario, imagining if she is not available. Then what I really need is another advocate.

One of my closest friends is my health care proxy. You can appoint one in New York state using the form found here. I have a copy, she has a copy, There’s a copy in my kitchen, the hospital has a copy. There’s a copy in my Google Drive folder that I discuss later on this page. I love my friend dearly, and I totally trust her. But I also know that it would be very stressful to be her having to make any decisions for me. She knows how complex my health is, and she knows she is not an expert. So I’ve done a number of things to provide her support so she feels less alone and more confident.

The first, is that I’ve assembled a trove of documents to give her more information and to let her know my wishes. The second, is that I’ve built her a support team.

The documents are all available online in a Google Drive folder that is shared with E and with three other people. E, R, M, and L all have each other’s contact information, as well as a copy of that in a document in the folder. E and I have talked about my wishes, and she’s been in my life for 20 years. She’s really good at asking questions and tracking down information. R has been a close friend for over 20 years who knows me, a bit about my health conditions, and is an excellent advisor and decision maker, but lives in another country. M and I have been friends for maybe 10-15 years. She is in the same state but not local. She’s great at phone calls and managing bureaucracy. L is a fellow patient with at least four of the same illnesses as me who lives in another state. She is also in several of the same online support groups, which could help answer questions in a crisis.

I feel really good about my team, and they are solid. They can provide E with any kind of collaborative support she needs if things go sideways, and it’s likely that at least one would be available. And I feel really good that neither of my parents are my health care proxy.

My parents are elderly and live in another state. They only know the broad strokes of information about my health. They know nothing of how I make decisions. They have no access to deeper resources. They might face some decision paralysis while being emotionally affected by me being in the hospital.

But their contact information is also written down for my team so that they can be looped in and don’t feel excluded if something is going on.

Immediately important information

That cover sheet can get folks started with the very basic critical information. The next set of documents is aimed for the next set of questions that folks might have to answer.

Medication

Is she on any medication?

Oh my. Is she ever.

I have two different 1 page documents on my medications. The first is a simple list of all the medications I take and their dosages.  The second is a sheet of how and when I actually take them across the span of a day. I try to update this information regularly, and always include the last update date on the top of the page. 

Family history

The next thing I’ve been asked in medical situations is does she have any history of/does anyone in your family have a history of…? So the next document I have for folks is a basic family health history document. I don’t have any children or siblings, so it just includes my parents, grandparents, and biological aunts and uncle.

When I was a senior in high school my health class required us to assemble a family health history. It was probably the most important thing that I actually got out of high school in some ways It was difficult and complicated, because my family is old. We have long generations and medicine has changed a lot in that period of time period so there were a lot of things that we simply didn’t know. But it did give me a bare bones document that I have expanded a bit over the years when I remember to, and have even had occasion to share with other family members who have found it useful. It’s given me something to take to those appointments where they ask you to map out your family’s cancer history, for example.

My history

I likewise have a copy of my own health history, a very stripped down bullet point document than I have assembled over the years. I’m not always great about updating it. But I do try to go in and add at least a few bullet points a year. It’s currently about 11 pages, with entries from all of the 50 years of my life. So very succinct. I don’t really expect others to read it, but it feels like an important record. I sometimes reference it myself. And It could be useful if I needed someone else to start managing my care on my behalf.

Pain Scale

So many people are frustrated with the useless face-based pain scales frequently seen in hospitals. I’ve never understood them at all, which many be due to my autism. As someone who can’t really read facial expressions on others as ascribe any meaning to me, they are just weird cartoons. And those of us who have chronic pain often have a difficult time conveying our pain experiences, and doctors often make bad assumptions or disbelieve us. 

There are quite a number of alternative pain scales out there, including a new one by the US military that loos pretty interesting. But I found one years ago that resonates with me, and I refer to it when I don’t know how to rate my own pain. I actually rate my own pain daily in my symptom log, which is an incredible record to analyze over time. I find that sharing my pain scale with medical professionals helps to ensure that we’re all on the same page about what I mean.

I’ve learned over time that I am prone to underrating my pain, so I try to check back with the scale periodically to keep myself aligned.

Explanations, wishes, instructions

I approached this as writing a letter, because that’s what makes sense to me. It’s a kind of hybrid document that partially serves as a living will. But also gives a lot of specific information about my illnesses and how I manage them. I imagine E reading this sitting in my hospital room when something has gone wrong enough that I’ve been assessed and admitted.

I’ve dated it with the last update date at the top. I’ve organized content into sections with a table of contents and page numbers so that it’s easier for someone who is stressed out to read it and to find things again. Here’s how it starts:

I love you. If you need this I’m sorry, and thank you, and I trust you. That will be true even if you make an imperfect decision, or one I wouldn’t have made. Use the team if you need. Don’t be shy.

I’m writing this from the perspective of assuming something went wrong, and I’m dealing with a hospital interaction. Emergency room leading to possible hospitalization. This could be from a serious injury or from something scary or life-threatening – extreme pain or dehydration, a cardiac event, serious illness like COVID, etc.

Diagnoses 1
Things to know about my meds 3
Do I need an MRI? 4
Do I need surgery/anesthesia? 4
Food and drink 4
Feeding Tube 5
IV fluids 5
Port 5
Heart rate 5
Environment 6
Comfort 6

Each section contains a brief narrative. Some include the names of other people who could help. For example, the name of a friend who’s had a feeding tube for a long time who could help answer questions about that. And the name of someone who has some god resources that have sometimes helped folks who need to get out of non-consensual hospitalization.

Reference documents

In addition to the pain scale, I have a number of other reference documents written by outside sources.  It includes things like my 2-Day CPET report, the SIGHI food histamine list, an article on Hyperadrenergic POTS, surgery and anesthesia information, and a few more.