Tag: medical care

On urgency and gender-affirming medical care.

On urgency and gender-affirming medical care.

In the New York Times Magazine article “The Battle Over Gender Therapy,” journalist Emily Bazelon describes the conflicting views of several medical doctors and psychologists. They disagree over timing and access: who should decide whether a young person receives gender-affirming medical care, and how long should this decision-making process take?

In general, waiting before finalizing a decision is best. This is true whether they are big decisions – like getting married or buying a house – or relatively small decisions – like buying a new couch, posting an irate Twitter message, or drinking another beer. If you can give yourself time to mull it over, you’ll probably be happier with your resulting decision, even if you end up doing the same thing.

In the film Searching for Bobby Fischer, a chess instructor attempts to teach this patience to his student:

“So what’s your best move?”

“Rook to d.”

“What about taking on e?”

“What about it?”

“You didn’t consider it. You’re still not considering it.”

“I’m right. Rook to d is the best move.”

“You didn’t study the board!”

Even when the answer seems clear, it’s still often better to take time to think. To plan, to weigh options.

But we don’t always have this luxury. Sometimes, when considering whether to buy a house, people feel forced to make a decision immediately – otherwise, someone else might buy it! These snap decisions, like the home purchases that many people made during the pandemic, are more likely to lead to regret.

For a person seeking gender-affirming medical care, deciding to begin hormone therapy might be an even bigger decision than getting married or buying a house. Hormone therapy can cause irreversible physical changes. For a person who was assigned female at birth, taking testosterone often results in a permanently deeper voice; reshaping of the face to appear more angular; changes in the shape and size of genitals.

Similarly, when a person who was assigned male at birth uses hormone therapy to help their appearance and physiology better match the gender of their brain, an analogous set of changes may linger even if this person decides to stop taking the medications.

And, yes, some people will decide to stop taking the medications. As with any medical treatment, hormone therapy has both benefits and side-effects, and it’s hard to know how these will balance out for a particular individual’s brain & body before they try.

So, it’s a big decision. There are irreversible changes. Obviously, taking a lot of time to wait and evaluate would be best, right?

But sometimes, competing urgency makes waiting impractical. As an example, consider surgical removal of an organ. This is a drastic measure: you’d like to wait and mull things over. Unfortunately, time pressure from the septic shock of an advanced bacterial infection might force a quick decision. My friend was barely conscious during this decision-making process after collapsing in the lobby of our local hospital.

When deciding whether or not to initiate gender-affirming hormone therapy, there’s a bit more wiggle room. But for a young person who’s mustered up enough self-knowledge and courage to talk to their parents or healthcare provider about wanting medication, there is still looming time pressure.

During puberty, bodies can change very drastically within a matter of months. Many of these changes are lifelong and irreversible. Waiting to evaluate isn’t just a default, low-impact choice. Hormone therapy is a big deal, but waiting will also bring dramatic, permanent physiological changes. Not to mention continued psychological turmoil, which might be compounded by the knowledge that, for all of your bravery in speaking up, you’re still not getting the help you need.

My main qualm with Bazelon’s article? For all the nuance devoted to the medical doctors’ and psychologists’ opinions, we hear very little from young people. Bazelon interviewed over 60 clinicians, researchers, activists, and historians, but only half that many of the young people whose brains, bodies, & lives are at stake. As a parent, I’m aware that children can do or say a lot of irksome, irrational things; as someone who works with elementary and high-school students, I also know that we have to recognize young people as valid knowers and thinkers.

I want to hear about the sense of urgency from young people themselves. Instead, this central issue was only passingly mentioned in a single sentence, a quote from child psychologist Laura Edwards-Leeper about the process of evaluating young people for gender-affirming treatment: “If a child was on the cusp of puberty, and anxious about how their body was about to change, we tried to squeeze them in faster, which I still think is really important.”

Young people have a stake in our world. And yet – with our inaction on climate change; our mass production & sale of military-grade weaponry to anybody who wants it; our treating schools as a lower priority than bars or restaurants during the pandemic, and then keeping schools closed or disrupted even after we had data showing that these disruptions were causing children even greater harm than Covid-19 infection; our age- and wealth-based prejudices that give retirees a far greater say in the future of our country & planet than the young people who will inherit the mess – we are not only disenfranchising young people, but abjectly failing them.

Young people have not been silent. We ought to listen.

On money, nursing home care, and Covid-19.

In April, I wrote several essays and articles about our collective response to Covid-19.

I was worried – and am still worried, honestly – that we weren’t making the best choices.

It’s hard not to feel cynical about the reasons why we’ve failed. For instance, our president seems more concerned about minimizing the visibility of disaster than addressing the disaster itself. We didn’t respond until this virus had spread for months, and even now our response has become politicized.

Also, the best plans now would include a stratified response based on risk factor. Much more than seasonal influenza, the risk of serious complications from Covid-19 increases with age. Because we didn’t act until the virus was widespread, eighty-year-olds should be receiving very different recommendations from forty- and fifty-year-olds.

Our national response is being led by an eighty-year-old physician, though, and he might be biased against imposing exceptional burdens on members of his own generation (even when their lives are at stake) and may be less sensitive to the harms that his recommendations have caused younger people.

I’m aware that this sounds prejudiced against older folks. That’s not my intent.

I care about saving lives.

Indeed, throughout April, I was arguing that our limited Covid-19 PCR testing capacity shouldn’t be used at hospitals. These tests were providing useful epidemiological data, but in most cases the results weren’t relevant for treatment. The best therapies for Covid-19 are supportive care – anti-inflammatories, inhalers, rest – delivered as early as possible, before a patient has begun to struggle for breath and further damage their lungs. Medical doctors provided this same care whether a Covid-19 test came back positive or negative.

(Or, they should have. Many patients were simply sent home and told to come back if they felt short of breath. Because they didn’t receive treatment early enough, some of these patients then died.)

Instead, our limited testing capacity should have been used at nursing homes. We should have been testing everyone before they went through the doors of a nursing home, because people in nursing homes are the most vulnerable to this virus.

I realize that it’s an imposition to make people get tested before going in, either for care or to work – even with real-time reverse-transcription PCR, you have to wait about two hours to see the results. But the inconvenience seems worthwhile, because it would save lives.

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From March 25 until May 10 – at the same time that I was arguing that our limited Covid-19 tests be used at nursing homes instead of hospitals – the state of New York had a policy stating that nursing homes were prohibited from testing people for Covid-19.

I really dislike the phrase “asymptomatic transmission” – it’s both confusing and inaccurate, because viral shedding is itself a symptom – but we knew early on that Covid-19 could be spread by people who felt fine. That’s why we should have been using PCR tests before letting people into nursing homes.

But in New York, nursing homes were “prohibited from requiring a hospitalized resident who is determined medically stable to be tested for COVID-19 prior to admission or readmission.”

This policy caused huge numbers of deaths.

Not only do nursing homes have the highest concentration of vulnerable people, they also have far fewer resources than hospitals with which to keep people safe. Nursing home budgets are smaller. Hallways are narrower. Air circulation is worse. The workers lack protective gear and training in sterile procedure. Nursing home workers are horrendously underpaid.

The low wages of nursing home workers aren’t just unethical, they’re dangerous. A recent study found that higher pay for nursing home workers led to significantly better health outcomes for residents.

This study’s result as described in the New York Times – “if every county increased its minimum wage by 10 percent, there could be 15,000 fewer deaths in nursing homes each year” – is obviously false. But even though the math doesn’t work out, raising the minimum wage is the right thing to do.

If we raised the minimum wage, we probably would have a few years in which fewer people died in nursing homes. But then we’d see just as many deaths.

Humans can’t live forever. With our current quality of care, maybe nursing home residents die at an average age of 85. If we raise the minimum wage, we’ll get better care, and then nursing home residents might die at an average age of 87. After two years, we’d reach a new equilibrium and the death rate would be unchanged from before.

But the raw number here – how many people die each year – isn’t our biggest concern. We want people to be happy, and an increase in the minimum wage would improve lives: both nursing home residents and workers. Which I’m sure that study’s lead author, economist Kristina Ruffini, also believes. The only problem is that things like “happiness” or “quality of life” are hard to quantify.

Especially when you’re dealing with an opposition party that argues that collective action can never improve the world, you have to focus on quantifiable data. Happiness is squishy. A death is unassailable.

Indeed, that’s partly why we’ve gotten our response to Covid-19 wrong. Some things are harder to measure than others. It’s easy to track the number of deaths caused by Covid-19. (Or at least, it should be – our president is still understating the numbers.)

It’s much harder to track the lives lost to fear, to domestic violence, and to despair (no link for this one – suddenly Fox News cares about “deaths of despair,” only because they dislike the shutdown even more than they dislike poor people).  It’s hard to put a number on the value of 60 million young people’s education.

But we can’t discount the parts of our lives that are hard to measure – often, they’re the most important.

On AIDS and drought in Malawi.

On AIDS and drought in Malawi.

Nobody wants to be bitten by a wild animal.  Even my former housemate, who is exceedingly likely to wrestle raccoons or be chased up a tree by a flock of angry turkeys each time she visits her ancestral home, would prefer not to be bitten.  But let’s say you slip up.  Make a wrong move and let some critter sink its teeth into your wrist.  In the United States, there are limited consequences to your mistake.raccoon.JPG

Maybe you’ve heard that the rabies vaccine is scary, but it’s not so bad.  A series of four; none hurt; none made me feel sore.  It did hurt when the nurse injected human-anti-rabies immune serum directly into my wound.  I began a long, loud diatribe – I know this is for the best, and I know that it hurting is not your fault, but I am decidedly unhappy right now – that went on for the entire twenty minutes it took for the nurse to inject ten milliliters.  All the children screaming in the ER at four a.m. sudden became very quiet; because the hospital was overcrowded that night, I was on a gurney just outside their ward.

Still, I didn’t suffer much.  By five thirty I was home, snoozing contentedly.

I’m not saying that health care in the United States is great.  I was a graduate student at Stanford.  We had fancy coverage.  I could drop by a fantastic hospital for free.  Others are less lucky.  People go broke from medical bills in this country.

I am saying that health care in the United States is pretty great compared to the standard fare on offer in Malawi.

malawiMalawi is a very poor country.  We – meaning not you & I personally, but rather the people who engendered the prosperity of the United States, from whom the contemporary beneficiaries inherited both wealth and blame – are responsible for the poverty of Malawi.  Throughout Africa, resources were plundered.  Europeans brought horrific violence to the continent.  And, because wealth begets wealth, the repercussions of these sins have grown more severe over time.  Unless there is a conscious effort to repair past economic wrongs, they won’t vanish on their own.

This same principle underpins lingering individual inequality in the United States.  Some wounds, time does not heal.  A rising tide only lifts those comfortably ensconced in boats.  The world’s plundered nations are still struggling, sinking farther and farther behind.

In addition to dire economic circumstances, Malawi has been ravaged by an HIV epidemic.  Ten percent of the population, approximately 1 million people, are living with HIV.  30,000 or more die of HIV-related illnesses each year.  This public health crisis is tragically self-perpetuating.  Poverty exacerbates epidemics by reducing access to medication and pushing people toward riskier lifestyles.  And then it’s hard to escape poverty since young people are dying daily and huge numbers of children are orphaned by disease.

In the United States, we often discuss the curtailed economic prospects for children raised in single-parent households.  Those children have it hard.  Now picture all the Malawian children in zero-parent households.

My father, who has worked with sick patients in HIV clinics in the United States for many years, is now practicing medicine in Malawi.  It’s grim.  For instance, the reason I began this piece with a description of rabies vaccination?  Those vaccines are not available in Malawi.  Instead of four relatively painless shots, those who get bit face death.

After four decades of practice as an infectious disease doctor, my father has obviously seen patients die.  But a sign like the one below is new for him.

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“Dying from rabies is a terrifying experience for both the patient and their relatives,” it says, before admonishing, “Don’t forget to ask about spiritual needs!”  Nothing drives home privilege like the thought that someone else’s son would die from the sort of bite that simply sent your own to a hospital for a late night.

It feels even worse knowing that his doctoring – and my sister’s, who will be traveling to Malawi with her newborn child to practice pediatric medicine starting this fall – is a meager staunch against whelming calamity.  People are dying now.  They can’t make effective long-term plans when the short-term outlook is so bleak.

And yet.  Poverty there is so deep, and infrastructure so quickly deteriorating, that many people have been chopping down the country’s few remaining forests to produce charcoal.  For many, charcoal production is the only source of income.  For others, in circumstances only slightly less dire, it’s necessary to buy charcoal to weather the frequent blackouts.  Even those responsible for protecting the forests buy illegal charcoal.  There’s no winning.

Without the forests, there will be drought.  When the drought comes, people will starve.  Climate change – caused primarily by the nations responsible for plundering our world’s currently-impoverished nations, yet which will beleaguer those plundered nations first – will exacerbate this problem.  New tragedies are coming.

I’ve obviously benefited from the prosperity of the United States.  I have a computer.  I have access to the internet.  When I turn the tap, there is clean water.  When I flick a switch, the room is instantly (and always!) illuminated.

But this means that the blame for the current plight of our world’s plundered nations – which brought my prosperity – falls on me, too.  I’m glad that my family members are doing what they can to help.  I wish it were enough.