Part 1: The last place where you will live.
At the time of writing this in May 2020, we’ve been collectively weighed down with COVID-19 now for about three months and I could write about innumerable subjects surrounding it: those 3D renderings (good and bad) of viruses, changes and things I’ve been impressed and delighted by, things I’ve been disappointed by. Like many places in the world, COVID-19 has been incredibly hard on Canada’s long term care facilities (LTCF’s), getting into them, sickening their workers and absolutely annihilating their vulnerable residents. So, as someone who works in Design and Healthcare, I really feel I should write about one thing that I think can’t be examined enough right now, nor in the future: the places where we die.
I’m going to tell you a couple of very personal stories. They’re formative for me and important, and I think they should be included in the enormous discussion that I feel we’re about to have collectively on aging, dying, the care that happens along the way, and most importantly how that care should happen. While you may think I’m an illustrator (as I am on this site - practically my professional hobby), I have done more, and am more insightful on health, aging, and certainly dying than most people know. Here it goes.
story #1
When I was a kid my Grandmother was diagnosed with Alzheimer’s. I was probably about 7 or 8 when this happened. My Grandmother who had a been whip-smart, razor sharp feisty little woman her entire life (came to Canada by herself from Scotland at 17!) was, according to my Mom, beginning to make inexplicable slips and mistakes. I hadn’t had enough interactions with her up to that point in my life to know her any differently, so over the next couple of years she just slowly became my weird, really forgetful Grandmother. In the beginning, though, I enjoyed our increasing visits to her house because I always got good ginger ale, some sweets and, while my parents were busy with her affairs, I could climb the TV antenna and get onto the roof.
Up until her diagnosis, she had been living by herself in a nice house in a nice, well aged, middle-class neighborhood near her friends in north Toronto - just off Avenue Road (if you know Toronto). A young guy, named Jeff, in the area helped everyone out, which she was grateful for. But when my Mom started to notice her mental slips and forgetfulness, she also started to scrutinize my Grandmother’s finances and the state of her household. So trusted was Jeff that he had been given full access by my Grandmother to her bank accounts and was slowly conning her out of her money and valuables. I think she was about one signature away from signing over power of attorney to him. She wasn’t the only person in the neighborhood being systematically defrauded, it turned out. “That old car in your garage? Not worth a thing! Let me take it off your hands.” Toronto Police fraud squad were called, Jeff hired the most expensive defense attorney in the country just before leaving Canada all together. Defrauding old people had been very, very lucrative for Jeff and, it turns out, his mother.
My parents sold her house in Toronto and, with some of the money, built an apartment and addition onto our own where my Grandmother could live, at least until she got too challenging to care for. As a then 9 year old, living with someone who was slowly losing their life to severe dementia and Alzheimer’s was both funny and frightening. It’s still the stuff of family stories - we laugh and cry. The things she did were so irrational, it was hard not to find them amusing, but it was also terrifying to behold. With each day that ticked by, she lost a tiny fraction of the independence and self-awareness that makes us human. She had been this clever, independent little Scottish woman, and here she could barely remember what she was doing or saying from one moment to the next, never mind why her youngest grandson didn’t want to interact with her. My friends never wanted to come over to play because she was there, and she was weird. They made cruel jokes about her that I would inevitably join in on and also make. With only two surviving Grandparents - one much, much more senile than the other - I just thought all old people were crazy. Even later in life, I occasionally caught myself being really surprised when I would encounter an older person who was lucid and 100% with it. In hindsight, I think I developed a fear and distrust of old people, which I wouldn’t get over until I started to work with them.*
Within about three years of living with us, my Grandmother’s Alzheimer’s progressed to the point that my Mom had to put her into a Long Term Care Facility. We went with her that day. I think I was eleven or twelve. I remember the place being filled with people like my Grandmother shuffling about, misdressed or partially undressed, doing nothing in particular, muttering irrational things, completely detached from the context. I remember one woman sitting on the chairs in the hallway moaning loudly. Some yelled and screamed. The place smelled of urine and old soup. To me and the fear I had developed, the old people’s home was an actual nightmare, so I avoided going with my Mom on her visits. Though my Mom tried to bring my Grandmother home a couple of times for family dinners at Christmas or Thanksgiving (well plied with Sherry for compliance during the car rides), the disruption of place and time and people was eventually too much for both of them, so my Mom stopped trying. As I refused to go with her to the Care Facility to visit, I actually never saw my Grandmother alive again. Over the years, my Mom would drive over a couple of times a week to visit after work and would return, teary eyed, with an occasional story: sometimes sad, sometimes funny. My Grandmother had gotten into a fight with a man (and gave as good as she got!); she had escaped - twice; she had wanted to save her lunchtime soup so poured it into her handbag; she had fallen and broken her hip, she had punched someone and broken her hand, she had lost her dentures, she had all her bras stolen by another resident, she had… Eventually, she had just curled up into a little ball and barely moved again.
My Mom continued to visit until my Grandmother eventually died of untreated cancer. By this point I think I was sixteen, an age when one really isn’t tuned into their parents emotional needs, but the release and the relief given by her death was evident in my Mom. Alzheimer’s is an unfathomably cruel disease for the person suffering it. Everything you know and are comfortable with slowly being unwound from your mind; slowly hollowing out what makes you a thinking, caring, communicating, beautiful human being. But before that, long before your body is ever allowed to follow, you die an agonizingly slow psycho-social death. Eight years is a long time to go through something like that. Even longer for the loved one(s) forced to witness it all and be participants, willing or not. Worse still if they’re mistreated along the way in the Long Term Care Facility, and one must witness that slow psycho-social dying being battered about by indignity, bullying, discomfort and possibly neglect.
Story #2
I’ve never written about this, so here it goes.
*I used to work with dead people. Lots of them.
Over nine years of working in human anatomy, I personally unbagged, handled, and did the best I could to care for close to 500 recently living people, from the moment they arrived in my lab to the moment we sent them for cremation when they were finished teaching medical and allied health students. I never planned to do this. It was never a goal of mine to learn how to embalm and care for dead people. I just found myself doing it after accepting a job in Anatomy at YouCanFigureItOut University in the fall of 2005, thinking I was really lucky - a once in a lifetime opportunity - to have been given the keys to a major Canadian medical school’s anatomy lab. At the time it was the teaching part I was really more interested in, and I could use my medical illustration and science communication skills to super effect.
My first body donation came in on my third day at work. I don’t know why, but it was kind of a surprise. I guess I didn’t expect that it would happen so soon. It was now my job to care for him from embalming, through teaching anatomy, to cremation, after which his remains would be graciously returned to his family. “637M”, Polish last name, male, aged 74 years. He had suffered a massive stroke two days prior and passed away that morning after his family had had a chance to say goodbye. He arrived, still warm, in a white body bag with his hands and feet carefully bound by strips of cut linen. There was just the faintest impression of where his diaper had been. He wasn’t dehydrated. He looked clean and was otherwise, prior to the stroke at least, a healthy human with, by all impressions, a loving family. He hadn’t lingered or really suffered. For that, he was maybe lucky.
During my years in Anatomy I was able, one summer, to train with Pathology residents learning how to perform autopsies. Generally in Anatomy we teach the living anatomy from the dead. We don’t do autopsies, we don’t discern or confirm the cause of death or anything like that we just teach and occasionally help researchers out. But every summer I would allocate two to three cadavers to teach Pathology residents how to approach and perform autopsies, the methodology, health and safety, what to look for etc. It wasn’t quite forensics, but it’s the foundation for it, and those residents would go on, like an anatomist, to help the dead teach the living. By the time I had done the training, I had had a lot of interactions with the dead. I had seen enough and knew enough to recognize what injuries or damage were post-mortem and pre or peri-mortem, what was normal and what was not - either diseased, chronic or acute, or just morphologically odd. I could safely say I was getting close to being an “expert” on dead people.
Based on that growing expertise, it turns out that many of the donors I handled over the years were not quite as fortunate as that first one, 637M. Anatomy is interesting in that our criteria for acceptance is actually quite narrow. No obesity, no trauma, no recent surgery, no infectious diseases like hepatitis, HIV, antibiotic resistant sepsis, or tuberculosis - nothing that would make for a poor cadaver (technically speaking) or pose a health risk to staff and students. So the donations we did have were largely old and had been infirm. Most of the time people and families plan to donate in advance. Families or individuals seldom have their act together enough when sudden illness causing death happens to organize donation beyond the last minute, though it does occasionally happen. But mostly, they have had time to think about it. Time in these circumstances, most often comes from being infirm; having had a good while - whether it was the decedent or their families - to think about their approaching death and, in this context, consider donating. So one could safely state that the people we did receive were also a good statistical sample or cross-section of people who had lived out their final days, weeks, months and possibly years in local long term care facilities, or occasionally local hospitals.
So after seeing enough of them, you can tell how they were cared for. Well fed, well hydrated, good body mass. Clean, no dirt on them, smelled fine. No oral thrush or candida infection elsewhere. Fingernails clipped. Hair cut. Shaved recently if they were men; nails done if women. Small dignities. You can see the care and respect the staff had in packing them up. Hands and feet carefully bound. Dentures placed back in their case, strategically placed next their head should they be needed for open-casket ceremonies. Diaper removed. Bottoms cleaned. An absorbent pad beneath their pelvis. Any medical paraphernalia such as IV’s and central lines removed and, occasionally, even covered over with a band-aid. Sometimes they would come with a teddy bear or personal note from staff or family. I kept a note, written in marker and kid-scrawl, that said “Get well Grandpa, I love you”, taped to the wall of our prep room as strong reminder, should I ever cease to be as empathetic as I was; a reminder that I was dealing with loved people. It was hard, but I really appreciated when that personal stuff came in with a donation. I saw all these signs of care, and it really was the ideal. Thank you to whomever took the time and care to do that. You are/were good at what you do.
Sadly, though, that level of care was quite rare. More often than not bodies weren’t clean. Instead, diapers were full. Fingernails long, unshaven, hair unkept. Wicked candida infections highlighting their skin folds a chalky white, say nothing of their mouths, full of thrush and occasional sores. Dentures long gone. I never encountered lice, but that’s not to say they weren’t there. Some were often seriously dehydrated and underweight. Dirt was sometimes caked onto their skin like they hadn’t had a bath in at least a week - I mean, it’s unlikely they were working in the garden just that morning and were about to be bathed before they passed away. They were neglected, full stop.
The worst cases were instead bathing in their own fluids - blood from open IV or central lines, urine and excrement, moisture condensed on the the inside of the bag. Sure it happens after death - things loosen up and let go - particularly if they hadn’t been fully continent in life. But this would have been solved simply with a diaper or a pad and some sense of care, or any notion that these people maybe weren’t simply going off to finally be cremated or buried; or any idea that someone professional, like a funeral service worker, pathologist or anatomist, would ever open this body bag with this person in it ever again. Some bodies came with sharps in the bag and actual medical waste. I remember a donation that came in with the diaper, which had been removed and placed between the persons legs. It was absolutely full of feces. So instead of throwing it out in the hospital waste, it was just put back in the body bag with the person, as if they were also waste, for disposal. We saw bed sores too. Lots of them. Some of them were right through to the bone - saccrums, femoral heads and the occasional spinal process right there open to the air. I remember a couple that were absolutely festering. That is inexcusable neglect.
We got to recognize certain care facilities, even a local hospital, as being particularly bad at “death care”. So bad, actually, that when I worked in Anatomy and read where the person had come from, we automatically put on extra PPE, and took extra care looking for sharps and medical waste when moving, opening up and unpacking a body bag. Currently, according to my former coworkers, because of their poor death care donations from those facilities are flat-out refused by Anatomy. If you’re so bad at death care, and you “missed” the sharps in the bags, what else did you miss? The Tuberculosis? The Hepatitis C? The actual cause of death? What else in the whole care equation is your facility also bad or negligent at if you can’t do this one, last, gracious, respectful task - no, DUTY - correctly?
I loved my job. I loved the teaching, loved constantly learning about anatomy, loved my coworkers and students, and even for a time I loved dealing with donated bodies. In one regard it was easy, our bottom line was simple: do the right thing. Just follow your heart or conscience and just care. There aren’t many jobs that make you feel something; that have an emotional aspect to them. But that job certainly had it. For a few years, I was actually grateful for that aspect. However, they - the people, their bodies and the stories written on them - add up over the years. It’s largely why I left. I just can’t describe how frustrating, depressing, infuriating all this was to contend with every damned work day. And I really tried to contend with it, I really tried to hold things together. I did pretty well, just ask my psychologist/counsellor. But in the end, I couldn’t do it any more. Caring and trying exhausted me, hurt me, and burnt me right out. So I get it.
Compassion fatigue. Moral injury. Emotional exhaustion. Whatever you want to call it, I’ve seen it in a few places in health care. The autopsy suite, when I was doing my training, was the first real place I noticed it. When an autopsy technician was forced to slow down and accommodate a group of first year pathology residents, I saw it written in annoyance on his face and in his eyes as he glared at us over the body of another Hamilton overdose victim. I thought, “Dude, don’t give me your 1000 yard stare, I’ve got my own.” But I’ve also seen it a little bit in the design work I do, trying to get people to talk to me about how something in healthcare, a procedure, or how a medical device works. I know it when I see it, and I know where it lives, and I definitely know it lives in Long Term Care. Going back to that statistical cross section, the bodies that came from long term care facilities and hospitals in our region, and my “expertise” in dead people, I can tell you that the care of our loved ones, and eventually, inevitably ourselves, is on average not as good as the Canadian public thinks it is. That should bother every one of us.
This spring COVID-19 got into Canadian Long Term Care Facilities, and it was heart breaking. Something like 80% of Canadian deaths at that point during the pandemic occurred in these facilities. Some were spared from the virus, others it just tore through staff and residents. They were so unprepared for it: so poorly designed, staffed, and had so little capacity to meet the new extra demands of care in the time of COVID that 1700 technicians, physicians, assistants and nurses from the Royal Canadian Medical Corps, the medical branch of the Canadian military, were called in to temporarily assist or take over operating some of the hardest hit care homes in Ontario and Quebec. Highlighting that even the military didn’t quite have the capacity to sustain the effort, they stressed that their assistance could only be short-term. Better solutions and more assistance needed to be found for these places. When their operation was nearing its end, they published a detailed report on what they witnessed (below). OP LASER JTFC - Observations in LTCF in Ontario.
The report confirmed what I had experienced working in Anatomy: neglect was rampant and severe in the worst facilities.
In the subsequent stories I want to talk about how I think we should respond, how much I think design will help.