The Death of an Analyst

There are few posts about death one wants to write. Some are poignant, like ones Oliver Sacks wrote before his passing. Some, like bits written by Carrie Fisher, bring a much needed giggle during an otherwise stark and deadly silent time. Laughter is much needed, particularly during grieving.

This post is about the life of Kelly Martin, as it entered its final days and so willingly brought in all aspects of living even while it was evident so much was softly fading away. It’s about how she maintained so much of how she lived (which she documented here), despite the severity of her illness. To often, as people near their end, we urge them to fight, to not go gentle into that goodnight. This post is about none of that. The battlefield where we so often take illness can take a big hike – no, this death is about all the comforts. To hell with battles when you can have Dilly bars for breakfast. And you better believe we did.

But, we also approached death like we analysts approach so many other things: can we build a better mousetrap? With a goal of getting good days, we tracked the data. What else do you do when you can’t get a sense of things?

Palliative care is all about symptom management, not curative treatment. Different health systems in different places have different rules about this (for example, in the US, this affects care decisions and payment). I’m not an expert about the rules and how this affects care planning based on health system/insurance/government…Here’s what I do know: you can still get pain management and there are a surprising number of treatments you can still do under palliative. Data coming, but people generally live longer with palliative care. Hospice and palliative care are often lumped together. There is nuance here, which I’m going to fail to achieve. Depending on where you live, this too gets defined differently.

Most hospice-at-home programs provide you with a piece of paper to track medicines. The challenge with these are multiple. Sometimes, you give the medicine at 3, other times 3:30. Does this make a difference? With the paper, you can’t tell and it’s hard to get a sense of it. Most end-of-life medications are ambiguous to the caregivers. What does restlessness mean anyway? Why do so many drugs cover it? Which one should you use?

Fair warning: I’m not a doctor or nurse. I have played them on training videos, but have taken no tests to offer legit proper medical advice. If you are trying to hospice at home, you absolutely need people with better letters after their names. I’m sharing this information because I hope it’s helpful for people to use when talking to legit medical professionals or to provide others a glimpse into what hospice at home looks like. And yes, I have permission to share this data and story. My nature, by default, is to not share, but at the request to get this out, here it is. It is the hope that some patient or family finds this and has an idea of what to expect. This also happened in British Columbia, Canada. This, too, makes a huge difference. More details and data on this later.

As a society, we rarely discuss what dying looks like. We’ve become divorced from the process, with care centers and paid caregivers handling much of the work. Per CIHI, only 15% of Canadians died at home in 2015. This number is increasing, but quite slowly. To often we think of dying in the binary: you either are or you aren’t. We seem to prefer to run from death, hide it in the corners, and speak of it only in whispers. Living is dying; and dying is still living. We laughed until the very end and it was not taboo. Laugh often, love hard, and live fully.

If you or someone you love are considering a home death:

1. Get into palliative care – earlier access improves results
2. Find a doctor to make home visits
3. Have at least a team of 2-3 people able to be in residence.
4. Get paid care to fill in the gaps.
5. Buy the bed you want. It’s worth it.

Just like birth plans, have a death plan. Is there a time or circumstance where you shouldn’t have a home death? If you had to pick just one thing that mattered, what is it? Having these conversations early – as much as they suck – makes a huge difference. Dr. Atul Gawande has a fantastic book to facilitate these conversations – Being Mortal. If you’re mortal, you should read it. If you are somehow immortal, you should read it anyway as everyone around you isn’t.

We knew what we were facing. We’re analysts. There’s no denying us the facts, literature, and definitely not the statistics. We hunted down everything we could, wrangled medical professionals into sharing more than they probably wanted, and we looked at what we did best: data analysis. Palliative care is all about symptom management. At no point will the drugs or treatment “fix” the root of the problem. They’ll mask the symptoms, they’ll buy time, and they’ll hopefully make things just a bit more comfortable. Palliation is also reactive to what’s happening at the time. Some items may be preventative, but they’re often for good reason, such as preventing seizures. Seizures suck. You do not want them, especially at the end of life.

Medicine also struggles with a cultural problem. In truth, we’re afraid of it. It’s a great mystery to most of us, too few of us understand the mechanics of how most work, and polypharmacy – the cascade of medicines to treat effects from other medicines – is a common problem towards the end of life. Worse, we fear certain terms, so instead, professionals use coded language: what does restlessness really mean anyway? Why do so many drugs cover it? Which one should I use?

We also fear that we’re making things worse. The drugs are too easy to blame when we often see them headlined on the news as bad things. We blame them for drowsiness, rather than the condition (data shows it’s more the condition than the medication, by the way). If you’re an analyst, though, you’ll begin to wonder if you can hack the good days, to get more of them. What factors get more good days versus bad days? And, this is how the end starts.

I designed this dashboard to begin to see what we were doing. I used it to learn how and when to use medications. Fair warning: medications like Haldol have some negative connotations, as it is typically used as an anti-psychotic. This goes back to culturally how we think and perceive mental illness. Different people will tell you different things about the use of Haldol in palliative care, as well as for treatment of both types of delirium. Second warning: delirium here is used in its technical sense. When you have a brain tumor, it has effects on alertness. Delirium is an alertness-related disorder and inserts yet another blurry line between sleep and awake. It presents a number of ways and both types suck in different ways.

The symptoms on this can look terrifying. If you’re on your cancer journey, please know cancer is different for everyone. There is no clear trajectory, and if you are the cancer patient, you are not a statistic, but an individual life that will take a varied course with no clear cut answers. This is one example out of many different paths that is specific for lung to brain metastases. I hope this helps for planning and discussions with doctors. These are breakthrough medications. We also had others to manage pain and other symptoms to keep things manageable.

No visualization is a picture-perfect view of the world. This is a snapshot of things we wanted to achieve: more good alert time. Sometimes, what was needed was sleep. Other times, we were able to reverse a drowsy state to an alert one with varied effectiveness. What’s not captured here is the laughter, the times we gardened or visited, and the few rare days when – even so close to dying – we went out to a park or shopping. Those, friends, are mine.

The data was collected through text messages between me and other caregivers, and memory. All errors are fully mine and all doses have been tracked and shared with medical professionals.

We often associate Tableau with work, reports, or maybe finding insight for profit. Making this dashboard not only helped create more time, but better quality time. It made a hard thing more manageable and less ambiguous. It clarified “restlessness” and helped us pinpoint and discuss what was happening. And yes, you better believe we designed this to Kelly’s standards, colors, spacing, labeling and all.

Some people get picnics and noodle salad. We got hospice and a hell of a lot of laughs and Dilly bars. To living as we die…