A friend posted an article on her Facebook page discussing a recent research study out of Sweden showing that people on the autism spectrum have a decreased life expectancy. This friend has a child with autism. Autism coupled with learning disability, according to this study, is associated with the largest decrease in life expectancy. This friend’s child has learning disabilities along with autism.

My friend is scared.

On top of her worries about social isolation of her child due to her conditions, on top of worrying about her child’s place in society as she becomes an adult, on top of the fears of every parent about their children’s health and wellbeing and risks in general, my friend has had dumped on her frightening data clearly relating specifically to her daughter.

Only it doesn’t relate specifically to her daughter.

It is an aggregation of data that compares medical and mortality statistics of a pool of 27 thousand people with autism with that of a comparison group of 2-and-a-half million people without diagnoses of autism. It is not specifically about my friend’s child.

But it is about my friend’s child, because it is about every person with autism.

That’s the thing about statistics. They are about everyone, yet they are about no one in particular. That’s an aspect of practicing medicine in a world full of data that is particularly challenging, fascinating, and maddening. And people not practicing medicine have a similarly challenging, fascinating, and maddening time navigating this world of information.

Problem is, humans are extraordinarily complex. First, there’s the biological complexity of any multicellular organism, the variability due to genetics, the effects of environment, the interplay of internal and external forces. Then there’s psychology – individual predilections, societal influences – and how much of each of those is due to inborn versus external influences of the individual or of the interacting individuals of society? Even seemingly simple questions can become metaphysical – why are x and y correlated? Does x cause y? Does y cause x? Does a third thing cause both x and y? Do the combination of a third, forth, and fifth thing cause x under some conditions and y under a different set of conditions, some of which overlap the conditions which predispose x to be affected? Is there something inherent in x or y or both that lead to their association? What, if anything about the properties of x or y or the conditions that combine to give rise to certain outcomes are modifiable?

If my patient or my child or my neighbor ostensibly fits into a category being described in a general news article reporting on a scientific study, how much weight and credence do I give to it? What about a medical or scientific journal article? Does that specific person truly fit that category? If so, in what ways? In what ways does he not exactly fit? How important is the closeness of the fit? Even if a seemingly perfect fit, what does that actually mean for a specific individual? What exactly did the researchers look at? What did they miss?

The autism mortality article wasn’t meant for my friend. It wasn’t meant for the parent of a specific child with autism. It wasn’t written to alarm her. It was meant for society. It was meant for those who would influence the allocation of funds for medical research and social policy development.

Which means that the article was meant for my friend – a parent of a specific child with autism, a person who advocates for funding of research and services and societal support. It was meant to alarm/alert all of us, and my friend is one of all of us.

My job as a doctor is to take data and apply it to real people. To dissect the data, to judge the quality of research, to integrate it with what makes scientific and physiologic sense, to humanize it. My job as a friend, a neighbor, a family member, a general citizen of Earth, is to comfort and support others. So here is my reaction to that particular article as it relates to the person who posted it and to her daughter:

The article refers to a correlational study looking at aggregate numbers. Although the numbers and conclusions are laid out as straightforward, the actual data and meaning are exceedingly complicated. The study is a start, a call to look more closely at an overall population and see where dangers are. It is a study of averages – it is not a study of individuals. It leaves ever so many more questions than answers. It does not know your daughter. It does not know you and your husband and your other children. It does not know your child’s teachers or doctors. It does not know your social supports. Although this study does not know all of the above, it can help you as it draws attention to necessary lines of inquiry regarding a population (of which your child is a member) that needs serious attention.

This study was done in Sweden. We do not know how the data extrapolate to other countries. Are there genetic or cultural characteristics in the overall Swedish population that could affect these data? The data showed different main causes of premature death in two different populations of those with autism – those with learning difficulties and those without. We do not know if these differences hold true globally, and we do not know what other differences or characteristics play a part.

There may be specific age-related spikes for the most common causes of mortality which could skew the data. Distribution of data points is extremely important to investigate, not just averages. At what else did the researchers look? At what did they not look?

There are people looking at important questions: How can we begin discerning the causes of the disparities? How can we ameliorate the causes?

So many questions. So few answers so far. So glad people are asking the questions that will lead us to information that will help individual people, and in turn will help a population at large. And sending strength to all who look at a headline with numbers and in those numbers can’t help but see the face of their child.

A link to the original abstract: Article in the British Journal of Psychiatry

A link to a discussion of the article by an autism research and advocacy charity in the UK: Autistica’s call to action piece

(Note to my children – do not read this. Other people who are close to me – you probably want to skip it, as well.)

It has taken me almost two years to be able to write this. We said goodbye to our beloved dog in early May of 2013. I grieved for well over a year.

About a month-and-a-half prior to his death, we had a big medical scare with him. I wrote at that time about how dealing with a veterinary emergency can provide us with some insights and practice parallels to dealing with human medical crises (Pet Practice). A veterinary crisis also has definite parallels to human end-of-life issues, and can highlight ethical concerns as well.

He was an older dog – old enough that my husband and I would occasionally mention animals’ life expectancies in front of our kids. The boys were well aware of what we were doing: “Mom, Dad, we know dogs don’t live as long as people, and you’re obviously trying to prepare us, but it’s totally going to suck when it happens, whether or not you remind us of how long dogs live.”

So he was older, slowing down in general, with a seizure disorder which had developed in his later years and was generally kept in check with medications (with one episode of multiple breakthroughs a month or two earlier), but reasonably active and happy overall.

The big scare I mentioned above came on pretty suddenly. He became progressively ill over the course of a day, and I brought him to the vet, who did a thorough exam and extensive lab work. It didn’t look good – obstructive biliary disease – and we were referred to a veterinary specialist for an ultrasound, expecting that it would show cancer.

I filled the family in on the details of what was happening, and I took him in for the imaging study. The ultrasound did not show cancer, but elucidated an issue that would be rapidly fatal if not addressed with emergent surgery.

I called my husband. Our dog was old. We didn’t have spare thousands of dollars lying around. We loved our dog. Our children loved our dog.

We happen to live about an hour-and-a-half away from one of the best veterinary schools in the country. I called them and told them what was happening. They said that we could bring our dog out there, and their estimate on the surgical cost was a bit lower than our local place.

I called my husband back. We talked again. Yes, our dog was on in years, but this was fixable. He could have a couple good years left in him. We would figure out a way to cover the cost. I brought him to the boys so they could give him a hug, and then I took him out to the veterinary school’s emergency clinic.

I brought the ultrasound disk and the lab results with me. They looked at everything, concurred with the diagnosis, and agreed that surgery was a reasonable option. “The other vet did tell you that the mortality rate for this surgery is about 30 to 35%, right?” Uh, no. No, he didn’t. How could I not have asked that?

I wasn’t going to change plans now. The odds were still in his favor, even if not what I had assumed. I gave him a kiss, signed the release forms, and gave the front desk my credit card.

And it worked. The surgery, though complicated, went well. He recovered. Within a few weeks, he was prancing and bounding and chasing rabbits like he did when he was much younger. We were so happy – we knew we had made the right decision. We played joyfully with him over the next few weeks.

And then he started seizing. Not just one breakthrough, but multiple. I brought him in. The vet upped his anti-seizure medications. He lost bladder control with the seizures, so I slept in the kitchen with him for the next two nights. He had more seizures. And his post-ictal (post-seizure) agitation kept increasing. It got worse through the next evening. His vet said there was nothing more he could do, and he sent us to the emergency clinic, which had a veterinary neurologist on staff.

The vet who was on duty that night in the emergency/specialty clinic was very kind. She said that it didn’t look good, but we were not without hope. She assured me they would do what they could overnight, she would keep me posted and I could come back in the morning to speak with the neurologist when he arrived.

So I headed back there the next morning. The neurologist said he recommended an MRI, since his seizure history sounded consistent with a brain tumor. The MRI would cost two thousand dollars. And then if it did show a tumor, and if it looked operable, we would have to decide whether to pay for and put him through brain surgery to remove it. He also said he had one other thing to try with medications.

I talked to our regular vet (a very smart man who had always given us sound guidance and advice), and he said that our dog had been through so much, that the prognosis was grim, and that if it were his dog he would not do surgery or the MRI (which would require anesthesia). I talked to my husband. We decided to give the neurologist’s pharmaceutical idea a try.

It didn’t work. The updates from the veterinary hospital throughout the day were very bad. We knew what had to happen. We told the boys, and we took them with us to the hospital so we could all say goodbye. It was a sad, tear-filled car ride.

They brought our doggie into a room with us. It was awful. He was horribly agitated, and he had lost his sight. He really didn’t show much, if any, sign of recognizing us. After hugging and petting him as much as and as best we could and saying what we needed to say, I told my husband and boys to wait in the waiting room. My husband wouldn’t leave me. The boys (12, 15 and 17 at the time) said they’d be ok and went out of the room together.

And then it was time. The vet gave me euthanasia consent papers to sign. I don’t remember exactly what they said, but I think I recall acknowledging the finality of the decision. And then it was really time. The vet asked if I wanted to stay. I said yes. I told my husband he didn’t have to stay, but he would not let me stay alone.

It was so very awful. So very, very awful. Our dog was clearly suffering. His agitation was severe – it had not been alleviated by any of the medications. I will skip the full play-by-play of the final actions, but I will describe a bit of what went through my mind.

“I have to be here. I have to stay here. Good pet owners stay until the end. I don’t want my husband to have to see this. I’m the doctor. I should be stronger than this. What am I doing? Why am I doing this? Am I doing the wrong thing? What if this is fixable? How much did money play into this decision? What kind of a monster am I? How can I do this to my family? Did I make this decision to stop him from suffering or did I make it to prevent me from suffering as I watch him? How can I do this? How can I not do this? Oh God, it’s done. What have I done?”

I stayed as long as I could, with my hand on his fur and my husband’s hand holding me. Then I had to get up. I had to go to the door. I kept talking to our sweet puppy dog. The vet still had her stethoscope on him. He had stopped breathing minutes prior but probably still had a few slow heartbeats left, but I just couldn’t stay any longer. I failed him in those last few seconds. He wasn’t alone, but it was someone else’s hand on him at the very end. The vet had no choice – she had to stay.

They handed us the bill at the front desk. We gave them our credit card.

We gathered our boys, held one another, and had a silent, tearful car ride home.

We grieved. And we recovered. But it took me a long time to recover.

This was a dog. Yes, he was our dog, our pet, a “member of our family,” but he was a dog, not a person. Yes, we all tend to anthropomorphize our pets, but I was not grieving his loss as I would grieve a person. We develop strong emotional attachments to our pets, and they symbolize responsibility, loyalty, and innocence. That wasn’t all of it. It was more complicated. It was much worse than when I had grieved dogs in the past as a child and teenager (and those previous times certainly hadn’t been easy).

I’m a doctor. I keep coming back to this. A big part of why I went into medicine was to prevent death. To promote life. To promote good health. To help give quality to life. And, when not possible to do the aforementioned, then to help support patients and their families through the loss of life. I have been with patients and their families numerous times at the very end of a life. It has been at times when my colleagues and I did everything we could to save a person but were not able. It has been at times when someone has chosen not to be resuscitated or to have “extraordinary measures” taken. It has been at times when the choice was to focus only on easing any pain at the end of life. It has been when removing life support. Some of those times were peaceful, and some of those times were frantic. But never, during any of those instances, did I myself do (nor write an order for someone else to do) something with the express purpose of stopping a heart. Even when removing  someone from ventilator support, we were removing a breath-sustaining machine (and therefore a life-sustaining machine), but the person’s respiratory system had already failed on its own – we were not purposefully making a person who was spontaneously breathing stop that breathing.

Almost two years ago, I signed papers authorizing a veterinarian to kill my dog. We use the word “euthanize” (“eu” meaning “good”, “than” meaning death, translating to a word that means “to kill painlessly,” generally to relieve suffering), which sounds much better than “kill,” but it doesn’t change what is done. Our vet told us we had chosen compassionately. In all reality, it probably would have been cruel to allow an animal to continue to suffer indefinitely with no understanding of what was happening, and it is not financially feasibly to put an animal on the comfort measures that we afford people at the end of life – our choice is a much harsher one with our pets. But still, I signed the papers to stop his breathing. What if I was wrong? I did not handle well the thought that I had chosen to end his life and that I could have made the incorrect choice. When I failed him in those final seconds, it was because I had failed myself. I second-guessed my thought process. I questioned my motives. I felt unworthy of him.

Those feelings hung with me heavily. There was an intense, deep feeling of guilt. Honestly, my really wrong decision probably was to have had him go through that surgery when he was so ill that month-and-a-half prior. It would have been a peaceful death if we had opted out of that surgery. There was nothing about the way he ended up dying that was peaceful. If only we had known then what was going to happen six weeks later.

People lament how much money we spend on medical care in people’s last few months of life. Policy experts and politicians look at the numbers and say we are wasting money and resources. People lament how so many people end up dying hooked up to machines in hospitals when they would much rather have died peacefully at home. But the vast majority of time I was working in a hospital, caring for people at the end of their lives, we had not known it would be the end. Surgeons did not usually advise surgery if they thought a patient was not going to live. We did not give people ventilator support with the expectation that they would not recover. And most of our patients did survive and return home, and get to celebrate another holiday or wedding with their families, and see more sunsets, and sing more songs – how many sunsets, how many songs are worth the cost of that care? More than once, even when an outlook was grim and we expected the worst, a person surprised us and recovered well beyond what we would have expected. And sometimes a person who we had expected to do well’s last moments were on a ventilator or with people pushing on her chest during CPR. We spend those resources and efforts at the end because we don’t know it’s the end.

We don’t know everything. And it’s really hard not to know everything. Especially when you’re the person who is supposed to have the answers.

My career is based on communication and empowerment within the medical world. I educate on the patient/family side and the medical professional side. It takes understanding and empathy from both sides of the stethoscope to optimize communication. It takes communication between both sides to bridge perceived power differentials. It takes work on both sides to change a culture of uneven power dynamics.

I read two Facebook posts within the past few days dealing with a culture issue that needs changing. This is a matter from the “general” as opposed to medical world, but that which is present in society-at-large certainly spills into medical or any other subset of society.

The first was written by a woman in her early forties, discussing the details of recent times (while in retail establishments) she’s received unwanted amorous advances from strangers (including a time when she had her young teenage son with her, and they included her son in the harassing conversation). The second post was by a friend whose 17-year-old daughter, who works weekends at a toy store, has been receiving come-ons from customers while their children play in the store. Both women experienced definite “ick” feelings as they were being harassed.

Thankfully, the majority of public interactions are not icky. These incidents referred to above are happily the exceptions to the general rule of civilized, respectful behavior. But although they are exceptions, they are not rare exceptions, and they are threatening.

I am close to the 17-year-old young woman. I feel perfectly comfortable offering her advice. And while I would like to tell her to respond to inappropriate comments with something to the effect of, “I cannot figure out why you would think it’s ok to say that to me,” I am hesitant to advise her to engage these people at all. I’m also hesitant to tell her to walk away. The first option places the power with her, while the second seems more like it leaves at least some power with the tasteless cad.

The problem is, it’s difficult to know whether the label “tasteless cad” is sufficient and accurate. If the issue is simply a lack of manners and a poor sense of humor, then perhaps pointing out the rudeness will help prevent the person from creeping out someone else. But what if the demonstrated disrespect reflects a fundamental disregard for the personhood of those harassed, and attests to a sense of entitlement? A challenge to that entitlement could theoretically provoke more of an assertion of power. Tough for a 17-year-old to gauge when it’s even difficult for a forty-something-year-old to do.

There are protections set up in schools and in workplaces (to prevent harassment from bosses or other employees), but there are no systematic protections regarding interactions with the general public. I would certainly report such matters to business management. A good manager will work to provide a safe environment for both employees and customers. Something as simple as placing a prominent sign reminding people to show respect to others can help establish expected conduct. Management can also ask someone to leave.

It’s more difficult when a store owner is the one engaging in the misconduct. If it’s the owner, I’d avoid that establishment and would warn others. A complaint to the Better Business Bureau or to the state Attorney General’s office may in some circumstances be warranted.

And for everyone’s well-being, we need to teach our kids by always modeling respectful speech and behavior – not reducing people to sexual objects, not describing relationships as conquests, and not indicating that it’s ever ok to make suggestive comments to strangers. If we witness inappropriate behavior, we need to show support to the person being hassled, and when possible we need to report the harassment (to management, to administration, etc., depending on where it is occurring). We need to hammer into our kids that it is never ok for others to harass them.

It’s better than it used to be, and we can all work together to keep improving our world. It will never be perfect, but the exceptions to civility should become increasingly rare.

Spring is here (although it may not yet feel like it). The days are getting longer. The temperature is slowly getting warmer. Green stuff will start poking through the ground and popping out on trees. We’ll see more of our neighbors, since they won’t be trying to get from their cars into their houses (and vice versa) as quickly as possible before they freeze.

Pollen allergies will start up again. And grass allergies.

So many people suffer from the watery, itchy eyes, itchy, runny nose, sneezy, general ickiness of seasonal allergies. And there are so many remedies in the aisle of the pharmacy – no prescription needed.

Several years ago, I spent the better part of an afternoon exasperated with our youngest son, who was maybe eight years old at the time. This was quite unusual. Unheard of, actually. Son number three tends not to piss us off. But he was acting really obnoxious. Not listening. Acting unruly. I was getting angrier at his behavior.

Then my husband (an engineer, mind you, not a doctor) said, “Didn’t you give him that anti-histamine a few hours ago?” Riiiiiiiight. He had had a reaction to some mosquito bites, so his pediatrician had told me to give him cetirizine to help quell the itchy welts.

Wonder-Doc over here hadn’t realized that her kid was reacting to a medication that affects the central nervous system.

As soon as my husband pointed out the obvious, my anger disappeared (replaced with a healthy dose of guilt), and I did a much better job of soothing my agitated son. And as soon as the drug was out of his system, he returned to his normal, sweet self.

The fact that something is available over-the-counter does not mean that it is completely safe/benign/without risk. This holds true for allergy meds, cold meds, or any medication for that matter.

Always read the bottle of a medication to see what potential side effects might be. Don’t drive when taking a medication unless you know how that medicine affects you and you are certain you can drive safely. Don’t take more than the recommended amount. Remember that any medication can interact with any other medication and that alcohol can interact with any medication.

Different people react differently to different things. Our middle son had taken that particular anti-histamine without any negative effects. Don’t assume that if a certain medication is fine for one person that it’s fine for another, or that if one person has difficulty with a particular medication that it’s bad for someone else. Talk to your doctor and your pharmacist with any concerns or questions.

A couple weeks ago, I was at the tail end of a cold. Our family was out in the car, and my eyes were itching and running non-stop. I had a post-nasal drip going and I was sneezing every two minutes. It was miserable. I needed an anti-histamine.

So we swung by a CVS and I picked up a small bottle of disolving-tablets-no-water-needed cetirizine. I took one. Within about an hour my eyes were significantly better and my sneezing frequency was cut in half. But for a short while I felt a little drowsy – almost as if I had had a glass of wine.

Available-without-a-prescription does not mean without-potential-consequences. Only take something if you really need it. Read labels. Ask questions. Watch for reactions. Listen to your body.

And enjoy getting back outside!