As some of you might know, I’m just finishing up my Registered Dietitian credential. I’ll write a bigger post on my whole experience once I’m done, but wanted to share the experience I had during my clinical rotation. To become an RD, you must complete your coursework, then you have an internship (unless you do a coordinated program, which includes the internship during your coursework).
Through my nutrition practice, I’ve predominantly worked with relatively healthy people who are looking to diet and lifestyle changes to prevent chronic disease. Working with these folks has been largely rewarding; they’re highly motivated and results came easily.
The hospital I am assigned to specializes in “Acute Long Term Care”. They take people who come out of the I.C.U. at a hospital who are too sick to transition right away to a nursing home or their own homes. I knew these folks were going to be very sick, and some of them would be dying. What could I possibly do as a nutritionist (who has focused on prevention) to benefit them? How is a feeding tube or some extra cans of Boost going to help them get better? I’ve spent the last six years trying to cure myself and assist others in avoiding long-term disaster through diet. I certainly wasn’t going to be able to encourage them to go paleo. I was really dreading this.
The first week was rough. I haven’t spent much time in hospitals, or around critically ill people. Luckily, I really liked my preceptor, the head RD. She is super sharp and wicked funny. I figured it might not be so bad as long as I got to work under her. I learned how to calculate IV nutrition for people who, for one reason or another, are unable to take food in through their GI tract. Other patients have to receive tube feeds, or “mechanically soft” diets, because they had problems swallowing, and others were able to eat but had no appetite because of issues like depression from being sick for so long, or simply were so nauseous or ill that they had no interest in eating.
I was devastated by everything I was seeing on a daily basis. With tears in my eyes, I asked my boss flat-out if this is how we all end. She reassured me that what I’m seeing in this particular hospital is the result of either bad lifestyle choices or simply bad luck. Lifestyle choices like smoking, drinking, poor diet and bad luck like a surgery gone wrong, infections, complications, etc. My job was to get nutrients into them, however I could. These formulas and hospital foods are not what I feed my family, but I kept telling myself that I just needed to get through this rotation in order to complete my RD.
By the third week, I was in a groove. I knew what needed to be done, and the days started to move much faster. I enjoy being busy and the pace of working in a hospital is fast, which I love. Visiting with the patients had become a pleasure. I got to see a few people get better, start eating more food, and gain weight. I also loved the connection I made with their families – who are often by their side all day long. Learning about all of the different health conditions these people were coming in with was fascinating. I also loved learning just how important nutrition is to recovery, especially in the case of healing from pressure wounds, which are so common among people who have been confined to a bed for a long time. What I was doing did make a difference, even if it wasn’t the most ideal nutrition. To my surprise, I began to think that it might be fun to pick up a few per diem shifts at a hospital once I complete my RD.
I also started talking to my boss about my philosophy on nutrient dense food. She’s a classically trained RD, and has been on weight watchers for a long time. I watched her morning bagels, diet cokes, salads with low-fat dressing and no protein for breakfast, only to have a sugar crash at 3pm. I slowly started sending her information and talking to her about my thoughts on optimal nutrition. I pointed out the issues I had with the diabetic education materials like this:
and recommended we take a slightly different approach, by proposing our patients learn about eating more protein and healthy fats with their meals instead of just focusing on carb counting. I also suggested that 250 grams of carbs might be “a little” high for someone who has type II diabetes and is obese. She was surprisingly receptive and started changing her breakfasts from 100% carbs to eggs. She confessed to me how her energy was up, her hunger was down, and that I was blowing her mind. My cookbooks still sat on her desk though. I hadn’t completely won her over yet.
Then there were the few patients that weren’t getting better. They were basically on life support and the nutrition they were getting would never help them recover enough to send them home. I attended a “family meeting”, where the family members of the patients come in and meet with the whole care team to make decisions. I started to realize that many of the patients didn’t have any death wishes and most of the families were doing all they could to keep their beloved family member alive. In most cases, this was not really in the best interest of anyone. The patient would never get better, the doctors were feeling frustrated, and the stressed out family kept visiting, hoping for a miracle.
I took the week of Christmas off. My Dad and his wife came to visit with us. They both are suffering from issues like heart disease, diabetes, and other chronic health problems of modern society. Because so much of my life at this point is dedicated to avoiding these issues, it can be very difficult for me to feel joy when I’m around them. I see how they’re unable to walk much, and how exhausted they get from daily life. Part of me was wishing I was back at the hospital, working, so that I didn’t have to be around it all. I felt so guilty because my Dad won’t be here much longer, and I love him so much. It’s a terribly conflicted feeling.
Facebook spit up a post in my feed, talking about how to view our time, and how much we need to cherish our little time left with loved ones. It crushed me. It was hard for me to stay in the moment without thinking about how my dad and his wife will soon be at a hospital like where I was working, with multiple complications. How long would they need to be on feeding tubes? How will they die? What will it look like? There’s nothing I can do to help save them.
It was a rough week. I was deep in my head, feeling awful and terribly guilty for not being able to stay in the moment. All I could do was go through the motions, and paint while listening to dark music. My dad asked me to smile. I couldn’t tell him what was on my mind. I felt like a shell of myself. I wasn’t sleeping. Every morning I’d wake up at 3am from a nightmare and couldn’t fall back asleep.
When I returned from taking the week off, I still wasn’t myself. The sleep deprivation kept going and it was like my brain had an electrical storm brewing inside it. I developed a lump in my throat and had no appetite. I was going through the motions of my job, but my eyes were heavy and filled with water. It felt like at any moment, I’d break down sobbing. I was completely detached from my own body and what was happening around me.
Many of the patients I had been following had left the week of Christmas. I tried to find out where they went. “Where is my cute little Russian lady in 304 with lung cancer and loved her tea?” and “What happened to the guy in 222 who was all contracted on a ventilator whose son watched over him every day?” I asked about the rest, too. The old man who had a stroke on the cruise ship and now has C. diff and MRSA. The high maintenance obese lady in 308, who had diabetes and two types of cancer on top of a nasty lung infection, who had asked me what glucose was. They, plus a bunch of others, were gone. And there were more very sick people I had to take care of immediately.
As the week went on, I learned my Russian lady went home to hospice care, C. diff guy had gone out for a procedure and then was readmitted for a new issue of massive blood clots in his colon, the diabetes lady went home, and my contracted old man had died. Instead of feeling sad about the death, I was relieved for him. I’m not sure if he was in pain, but his body had looked so tense. No amount of tube feed would have helped him. There was nothing the doctors could do.
That same week, another patient died. I saw the entire extended family visit him that afternoon to say goodbye. The nurses quietly seemed relieved. By the time he left, he was less than 90lbs, on IV nutrition, a ventilator, and dialysis. It was his time. I was relieved for him.
I had new patients and started to guess who might make it and who wouldn’t. I had one guy who looked like a skinny version of Theon, suffering from AIDS and had lost 40lbs in the last 2 months. He had such a nice big smile and was so sweet when we met. I could tell there isn’t much time left for him. The dam broke on my eyes when I hit the stairs leading down from his floor to my office. There’s nothing I can do for him. He will need about two times as much food as he’s currently eating to gain this weight back, and he’s so sick that there isn’t much anyone can do for him.
At this point, I considered shutting down my blog and dropping off the nutrition scene all together. The thought of death, and how little difference I can make, was all consuming to me. What difference does anything I have to say matter when so many people aren’t willing to change their lifestyle? Furthermore, who cares about sustainability? Most people get into paleo to look better naked. Great. But what difference does anything I’m saying make in the bigger picture of our screwed up healthcare system? I sipped my hospital coffee from my styrofoam cup, looking up the ratio of corn syrup to soybean oil in the next patient’s tube feed. Eyes still heavy.
Why do we fear death so much? How come we can’t talk about it? Why don’t most people have a healthcare proxy or a set of wishes for how they want their last days to go? Also, why aren’t we all allowed to take charge of our own death? Why is this a scary topic and why have I been so nervous to be near it? Are all of our efforts to keep people alive as long as possible really in our best interest?
I think one reason may be because we like to think we’re not animals; that somehow humans are above nature. This concept is a major driving force behind a lot of our society’s issues in my mind. I bring it up in my nutrition presentations often with this illustration:
We humans like to think we’re above nature, that we can somehow take magic pills to live long and avoid death.
The reality is, we are part of nature.
Death is something none of us will escape. I, for one, want to make sure that nobody else will be stressed out trying to keep me in a coma when I’m 87 and have a terminal illness and am in tremendous pain. Pull the plug and let me go. It’s ok. I forgive you. It’s what I want. Of course, Facebook’s algorithm seemed to know what I was thinking and this article came up in my news feed, asking if artificially prolonged old age is the new iatrogenic malady. I’m with the author when she says, “When it’s time to go, give me a nice glass of whisky and a pleasing pill.”
I happen to have a bunch of friends in healthcare, and I asked them if they have plans for their end of life. Every one of them said yes, DO NOT RESUSCITATE!
This makes so much sense to me because they see, on a regular basis, the pain their patients and their families are in during those last years/months/days. Most of the time, the families are the ones wanting to keep the patient alive no matter what, when what’s best for the patient might be to fade away without all of this extra intervention keeping their heart beating, but would never bring them back to any sort of real life.
Let’s do our best to live life fully. When our time is up, let’s try to make sure it’s fast and with the least amount of pain to caregivers and ourselves as possible. In my mind, it’s irresponsible to leave this burden on family and friends. If you live in Massachusetts, there’s something called a MOLST (Massachusetts Medical Orders for Life Sustaining Treatment) form you can fill out. It goes beyond “do not resuscitate” and has clear instructions for caregivers about your wishes. Those of you in other states can use a POLST form (Physicians Orders for Life Sustaining Treatment). Fill it out. Ask your partner and parents to fill one out. Another thing to consider is how you want to be buried. Want to be pumped full of chemicals and add to environmental toxins or maybe a more natural way? There is a company that has a unique solution of biodegradable burial capsules that will turn the deceased body into nutrients that will grow a tree. Beautiful.
Before I left for the long New Year weekend, I noticed that my boss took home my cookbooks, and the Whole30 book I had lent her. She seemed “almost there” when we said bye on Thursday night. Then I got this text from her today:
I know it will change her life and hopefully some of the nutrition policies at the hospital as well. Meanwhile, I’ve got a few more months left before I’m done. I’m still struggling with my emotions around end of life but I have to say, it’s been a great learning experience for me to be exposed to all of this. I’m sleeping better and my eyes are a little drier over the past few days, though I still have a lump in my throat. I had a great podcast interview with Mark Baker, who was going to shut down his farm after major government harassment, and now has a new vision (I’ll post that this week). It was really inspirational and I’m so glad that we talked right when I needed it. I also talked with my Dad over the phone and explained why I was so depressed while he was here. He got it. “It sucks getting older”, he said.
I would never have chosen to work in this setting, but am grateful for what it’s opened me up to. The end (of my RD training) is in sight.