The Dangerous Non-Overlap Between End of Life and Liability

Last Thursday while we were in a meeting, Strange received a call from the hospital in the town where his mother lives. She had been found unconscious in her home, laying for an unclear amount of time in her own urine. The exterminator that found her called 911 and she was transported to the emergency department. I’m laying out the record of what happened next both to document for myself that I am not crazy and to outline the critical importance of communicating your end of life wishes with your family.

Strange is an only child and Strange Mom is not married. Life with Strange Mom had been difficult lately, mainly because of her absolute refusal to have these types of discussions. At 85, there was a significant probability that she would face an end of life issue in the near future. She wanted desperately to maintain the status quo. We had hints that she had begun to decline, but she refused to discuss her finances or her wishes. The best information we had was based on a single conversation they had a few years ago – if there was a chance she could recover, she wanted all heroic measures in the world performed. If there wasn’t a chance she could recover to write poetry, that was the end. In the last few days we’ve been able to get a beginning sense of how bad her financial situation is. She is deeply, deeply in debt and has $58 in liquid assets. Once her creditors are paid, there will likely be no equity in her home.

Strange Mom’s stroke has been absolutely devastating. An extremely large portion of the left side of her brain is affected. She cannot speak. Up until recently she could not swallow, and now can only manage small bites of pudding. The areas of her brain that are important for information processing and understanding are severely damaged. She can’t follow directions. Her motor function on her right side is severely limited. She cannot care for herself, she cannot toilet, and she cannot move in her bed.  In the ICU, her neurologist said, “We want to be sure that she doesn’t have another stroke?” After the neurologist left, Strange asked, “Why would another stroke be bad? This is horrible?”

After several painful, painful conversations, we developed come clarity that she would not have wanted to live like this. As Strange puts it, she was a woman of language. To not be able to communicate would have been unpalatable to her. Given the severity of her other symptoms, and the fact that she would have needed a percutaneous endoscopic gastromy tube, in order to support adequate nutrition, Strange decided that palliative care was the best route for her, with the long term goal of moving to a hospice setting. With that in mind, we decided on the following goals:

  • She should be made and kept comfortable
  • It would be ideal to have her with her family at the end of her life, where she would be cared for and not alone.

Now, knowing that there was a storm brewing on the horizon, we had set aside some money to deal with Strange Mom’s final affairs and to transport our family to her town for a funeral.  Before we left the hospital on Monday, we had a positive conversation with the palliative care team about transporting her to Iowa to be with us. We could care for her in our home until she became a hospice candidate, and then she would move to residential hospice. Because her family would be around her and wouldn’t have to travel, we could use a large portion of the money we had set aside for her final arrangements to fund her transport. When we left, the doctor shook our hands, said he understood the plan, and that we should even call his cell if he could help.

A few hours later, the tone of things changed.

Talking to the case manager, she asked if we had considered that there was a non-zero possibility that she would die in transport. I was puzzled. She’s going to hospice. There’s a non-zero possibility that she will die soon anyway. Wouldn’t she want to be with her grand kids if she had the possibility?

Since Monday, the hospital has gone largely dark, with the exception of a couple of intense conversations with the doctor and case manager. In yesterday’s conversation, the doctor reiterated that it was possible that she could die in the transport. We asked, “Are you telling us that her condition has severely deteriorated? Is she medically unstable?” “No, just that it’s a long uncomfortable trip in a car and it’s a possibility.”

She’s immobilized in a bed, sitting in a diaper, with hospice as an end goal, anyway. If we could help her to see her family, isn’t it worth an uncomfortable car ride?

They recommended an air transport, for more than $30,000 if we wanted to bring her home. We can squeak together the money for the ambulance. There’s no way we have $30,000+ for an air flight and neither does she. During the conversation, it became clear that there was an underlying factor that the hospital was considering. The doctor mentioned that his “hands are tied” and that “risk management” was involved.  Today, the palliative care nurse said specifically, “Her doctor is worried that you’ll sue if she dies in transport.”

Fast forward to this afternoon when we had another conversation with the doctor and case manager. The doctor remarked that he did “not believe that it is in her best interest to travel by ambulance.” But, it’s not clear to us why, other than it’s uncomfortable. The solution from the case worker is that we have a choice between a 1) $30,000+ air flight and 2) signing her out AMA and arranging transport on our own.  We asked why she can’t go directly to hospice. Because she doesn’t have an end of life symptom yet that must be managed.

I can’t convey in a blog post how upsetting I found our conversation. I asked over and over, “If you’re telling me that she is so unstable that she can’t be transported because she will likely die, please give us another option.” The case worker kept repeating that our only options are to sign her out AMA or put her on an airplane.  I kept repeating that it wasn’t clear to me that the suggestion that we sign her out AMA was because the doctor truly didn’t agree with our plan and thought there was a high probability she’d die, or because they were afraid of the liability in case she died.

Their other suggestion was to discharge her to a long term care facility, which is only covered by her Medicare if she is going for rehab. We want her to have comfort measures, not intense rehab. Medicare won’t pay for comfort care in a skilled nursing facility and we don’t have $243/day plus the cost of her final arrangements and travel for our family. Neither does she.

They suggested that we move her home, but her home is not receptive to her return and she has no coverage for home health comfort care.

So, the only option that we have on Friday afternoon is to leave her in the hospital.  And that’s where we stand…

That 70s Diet – An Update on Day #2

If anyone ever suggests that our mother and grandmothers weren’t super heroes, you need to punch that person in the mouth. Cooking with gelatin is really, really hard.

bowie gif

Today’s random draw from the 1970’s diet deck was a “gelatin cheese mold.” I have been reading a lot about gelatin this week, in an effort to not make last week’s mistakes resulting in wet dog smell, again. Turns out, if you leave gelatin sitting in the cold liquid it “blooms” and then you only have to lightly heat the liquid in order to dissolve it. It was seriously magical.

But, I still don’t have my liquid to gelatin ratio right, so when I turned my mold over, it didn’t give me a delightfully wiggly, fruity, cheesey, layered delight. I got something that looked like the aftermath of botched liposuction.

mold fail

Everyone in the family proclaimed that it is delicious, but I am not satisfied with my failure to mold gelatin. I’m a scientist, after all, and I cannot rest until I know the special secret to adding diet soda to fruity gelatin without having it fall apart.

The 70’s diet plan may also be proving a challenge my marriage. The other night, I was trying to see if an odd pot lid would fit a mismatched pot. Strange came up from behind and declared in his all-knowing baritone, “You know, when I have that challenge I usually just put a piece of foil over the top of the pot.” He was nearly stabbed with a wooden spoon.

Tonight when my fluted mold collapsed in a sadness pile he uttered, “Gelatin really takes longet to set than you might think.”

Well, gelatin and Strange be damned!! I’m not going to let the 70’s diet plan get me down!!!! I’ll be back with the recipe when I can figure out the mysteries of gelatin.

A Follow-Up on Writing – Avoid Becoming an Academic Camel

I saw my post on writing a scientific paper being passed around on social media this morning. Folks in the lab and collaborating labs are doing a lot of writing these days and it’s made me think about how I might expand upon, or improve upon, the paper writing process I previously described.

Recently I’ve been talking to folks about the risk of being an academic camel. I had heard the phrase “emotional camel” used somewhere on some reality show and it made me chuckle. An emotional camel is someone who has sporadic emotional interactions, so they have to store everything up like a camel storing fuel in its hump. Then, after sucking the emotional life out of something, the emotional camel can go for long stretches of time without additional reinforcement.


It’s not a perfect analogy, but the academic camel stores knowledge generally related to its research area in its hump. When the time comes to need some knowledge for a grant or a presentation or a paper, it indiscriminately brings forth everything that it’s stored in it’s hump in a giant, loosely organized ta-da!

The motivation is often the wow the observer/reader/reviewer with the sheer amount that you know about a topic, afraid that if you don’t unload everything you’ll have missed something important. The output of the academic camel (which I was, once upon a time) is difficult to parse through. It leaves the recipient feeling as though the camel knows a lot of stuff, but unsure as to why you need to know it too. If you’re not sure why you need to know it, is it even really important? As the camel, that’s a difficult position to put your audience in, wondering if what you’re telling them is important.

kid mess gif

So, clarity and context are really important. How do you get there in your writing? I’ve been recommending that folks use a trick we all learned in the 6th grade and I re-learned after a brief interlude as an academic camel – outlining. I have yet to meet a more junior scientist that outlines.

It seems silly, but most of my papers have a very similar style. Rather than writing in the stream of consciousness, I start by creating sentences or questions that, when arranged in order, make my points. Almost like the process of writing topic sentences for paragraphs. Say, for example, I am writing an introduction to a paper about the impact of yo-yo shape on recoil speed, I might create the following sequences of questions:

  • What factors contribute the the functionality of the yo-yo?
    • This is where I would generally introduce the factors that influence functionality including recoil speed
  • What gaps exist in our knowledge of the factors that impact recoil speed?
    • This is where I would make a case that there are factors that influence recoil speed, including shape, and take the opportunity to identify the gap in our knowledge (the impact of shape).
  • How might shape be an important contributor to recoil speed?
    • This is where I would introduce my hypothesis

Whether you choose to leave the questions in place as section headers is a stylistic choice. I often do, especially in the discussion of a paper. The person I trained with as a postdoc wrote with that style and I always liked it. Sort of like asking questions you know the answer to and then leading the reader to share it.

Either way, before starting a presentation or publication, the most important thing is to outline it out. Otherwise, it is very easy to realize you’ve talked around in circles or, worse, become the academic camel, dumping all of the information you know without purpose.

That 70s Diet Day #1 – Jellied Tomato Refresher

Sunday morning, Strange and I were sitting on the couch goofing off. I was catching up with Twitter and scrolling through the feed of one of my favorite accounts – 70’s Dinner Party (@70s_Party). When I was a little girl, my mother had a 1970’s Betty Crocker cookbook that has since been lost to the ages. I would lay on the living room floor and leaf through it for hours. This account just makes me nostalgic.

chilled celery logSwiping past all of the 70’s-era delights on my iPhone, I made a comment to Strange that they all seemed pretty low carb. I showed him the picture of  chilled celery log. Could it be that the 70’s were such a magical time because they were all in a blissful state of ketosis? Strange glanced, grimaced and shuddered. That felt like a challenge and I told him that I thought I could recreate all of the magical recipes from the deck that the chilled celery log came from and that he wouldn’t even hate them.

Turns out, they’re fairly easily accessible online (here and here). Problem is, the actual recipes aren’t available, thereby adding a new and more interesting dimension to the challenge. Could I re-create the recipe in spirit, while also making them palatable and also keep them in line with our low carb lifestyle? A challenge was really coming together…

Strange and I agreed to a couple of ground rules..

  • I would pick the recipes at random
  • They had to be prepared low carb
  • We don’t have to make a recipe when we have the kids. They should have to suffer too
  • I don’t need to use green peppers even if I know they’re in the recipe. Green peppers make me gag. Fuck green peppers. Green peppers are my hard limit.

And so, the challenge began..


The first recipe selected by the random number generator was “Jellied jelliedtomato2Tomato Refresher.” I have to admit, I was not emotionally ready to have that be the first one. I was hoping for an easy one containing hot dogs or slaw. I was not ready to have to begin with gelatin work.

I stared at that picture for a long time, wonder what I do to make that somehow palatable. It looks a little like road kill sans the skin and fur. What could be added to tomato to make it refreshing? There’s only one answer.

Vodka. A lot of vodka. I went to the market.

Browsing the aisles of our brand new Trader Joes, I thought that perhaps this recipe could be survivable if I went with Bloody Mary as an inspiration. I assembled my ingredients, pictured mostly below until the whole enterprise came off the rails.

Shown to the lefingredient list.jpgt are the general ingredients.

  • One can of plum tomatoes (see addendum)
  • A cup or so of vodka
  • A box of Knox’s gelatin
  • Worcestershire sauce to tast
  • Salt to taste
  • Celery seed to taste
  • Tapatio hot sauce
  • Shrimp and other garnishes

I started by pureeing up the tomatoes to make a thick liquid, as opposed to whole tomatoes. This yielded just a bit shy of three cups. To that, I added on cup of vodka. I microwaved about a half cup of water to dissolve the gelatin and tore open one of the envelopes.

That’s when it occurred to me that I probably should figure out how much gelatin I’d need. I had ripped off the first line of the instructions, but could still read part of the word “gelatin” followed by 1 cup hot water and 2 cups fruit juice. I figured I was in business. I added a packet of gelatin, mixed it all together and popped it in the fridge.IMG_3015

That’s when everything went awry.

I spent the next few hours helping Little I clean his toxic dump of a bedroom. I came upstairs to check on my hellish creation and it was the consistency of thick tomato sauce with an awkwardly gummy bottom. I checked the remaining envelope of gelatin and realized that the recipe did not call for one envelope of gelatin to four cups liquid. It called for three envelopes. At about the moment, my eyes started to itch, and my throat started feeling tight. Whatever I had gotten into in Little I’s room had made my mast cells very, very angry. I called to Strange, “I need 50 mg of Benadryl right now before I die and another box of gelatin.”

When I woke up several hours later, chaos had ensued. Some attempts had been made to rescue my creation that resulted in a weird, uneven concoction with some portions having the consistency of rotting flesh. I dumped it down the drain and vowed to start anew anon.

Today I woke up, went to the pantry and pulled out a can of diced tomatoes. You can’t go wrong with died tomatoes. They’re a classic. I emptied them into a measuring cup. The can yielded about 2 cups of tomato stuff. I added another cup of Uncle Tito’s finest moonshine.

I was not going to go wrong with the gelatin this time, so I put a cup of water on the stove, heated and slowly added three packets of gelatin. It turns out, there is a science to dissolving gelatin that I did not know at the time, but will file away for future recipes. I boiled the gelatin.. I boiled the shit out of it and I would not recommend this because boiling gelatin smells like the most wretched of wet dogs. I put my mixture in the fridge, read about how you shouldn’t boil gelatin, and then sat around and stressed that my mixture wouldn’t set because I had boiled it.IMG_3018

Well, the punch line is that we’re here because my new tomato beast set!!! Science be damned and gelatin be boiled!!

The last step was presentation and luckily TD was around to help. We cut the gelatin into small cubes and dished them into a martini glass for effect. We added a couple of big Argentinean shrimp (whatever those are), some olives and homemade pickles.  The whole mold probably serves seven or eight. Total carbs for the endeavor is about 2.

So, allow us to present Jellied Tomato Refresher, presented in their 70’s filter glory..

Turns out, jellied tomatoes and vodka with Bloody Mary spices is pretty delicious. We added a little extra salt and Worcestershire sauce, but olives, pickles and shrimp can make just about anything delicious. Strange took his first bite and proclaimed, “Man, now I just wish I had a Parliament.” The only place went off the path to success is in not stopping at one. One is, indeed, refreshing. We had a pretty happy buzz and were gleefully chomping shrimp like Mary Richards and whatever dude she was dating at the time. The second had us feeling a little ill and hyper aware of the fact that we were eating gelatinous tomatoes. My advice is to stop at one.

Until next time, 70’s party on dudes!




Saturday Morning Thoughts on Liberty

This morning I’m reading a biography about Sandra Day O’Connor and Ruth Bader Ginsburg that I picked up from the local library titled Sisters in Law. It’s a particular accesible read, but there have been a few passages in particular that have struck me, especially given the current climate.

For example, the author writes about Bader Ginsburg’s former professor at Cornell, Robert Cushman…

Life would be “better,” to Ruth’s mentor, if people stopped using the language of patriotism to defend their privileges and the less powerful were free to speak against them.

Indeed, Professor Cushman. Indeed.