What doctors should ignore

A fascinating op-ed appeared in yesterday’s New York Times: https://www.nytimes.com/2017/12/08/opinion/sunday/should-medicine-discard-race.html?emc=edit_th_20171210&nl=todaysheadlines&nlid=44005038

The author, Moises Velasquez-Manoff, argues that tying the propensity for certain diseases and health care behaviors primarily to racial identity is problematic. An example is sickle cell anemia, long hailed as a “Black person’s disease.” making exceptions to the rule–i.e., “White” patients with the disease–difficult to explain. The reason for the confusion, as suggested in the article, is that there are far too many unknowns and misconceptions in our broad understanding of race.

Several years ago, I listened to a featured speaker at the Cancer Health Disparities Conference sponsored by the American Association for Cancer Research. He made the argument that beneath just about every claim of health disparity tied to race was an insufficiently-explored inequity of another sort–economics, housing or diet, for example. In effect, the speaker (whose name unfortunately escapes me) proposed that researchers think carefully before focusing on race in medical research and health care rather than the socioeconomic factors that might be more influential on the health of a particular individual or population.

I have to wonder where this argument will lead as more of us investigate our genetic histories and discover that we may not be who we think we are.

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What’s in a name?

Many societies privilege particular ways of referring to individuals and share unspoken laws about which terms are proper for referring to men, women, and children as well as specific members of one’s own family. I came across an article today that addresses how women’s names are NOT spoken in Afghanistan, a practice  stemming from a tribal tradition that doing so exposes a wife or mother to visibility by other men. The same underlying logic influences conventions for dress. A body exposed, like a name revealed, dishonors a woman–but perhaps more importantly, the man/men to whom she belongs.

I’m of two minds on the perspective presented in Mashal’s article. On one hand, I would be appalled to be called “My Goat” or “The Household” rather than by my given name, “Cynthia.” I like to think that people who speak or see my name recognize the things I have accomplished and the person I have striven to become through my beliefs and actions.

On the other hand, I acknowledge the ethical barriers to intervening in the practices of another culture, of assuming that our Western perspective and attitudes are the best and should be the lens through which we judge others.  For example, I have taught many women over the years who cover their heads with a hijab and just about every inch of their bodies, few of whom I would describe as oppressed or diminished by the practice.

Corpse Hotels

I admit to leaning towards the morose in my interests. Since traveling to the Netherlands and learning about a rising trend towards sustainable funerals there (and elsewhere around the globe, I discovered), I have become increasingly intrigued with modern accommodations for the deceased–and the living who remain behind. In today’s NYT, I came across a story about an innovative practice in Japan–in Tokyo, specifically–for addressing the needs of small families who have lost a loved one: corpse hotels.

Since crematories are too few to accommodate the needs of an aging Japanese population and traditional funeral homes often offer too expensive and elaborate services for a small family facing the death of a loved one, some unique hotels have sprouted up to fill the gap. According to the article (and accompanying video clip), Japanese tradition dictates a night-long wake in the deceased’s family home followed by cremation in a nearby facility on the following day. But with space in Tokyo at a premium, forcing families into smaller high rise condos and apartments less welcoming of corpses, and overbooked crematories requiring waits of a week or more in some instances, an alternative intermediate resting place for the deceased and family members has become necessary.

These spaces provide “rest” of two kinds–for the deceased awaiting cremation and for family members seeking a comfortable environment for paying last respects and remaining with the departed until final rites can be performed.

While this business venture is certainly market-driven and provides an opportunity for profit among those behind corpse hotels, I think that the services provided are likely appreciated by the families who utilize them.

Trump and tractors

Today marks my 15th day in Illinois. I headed this way on Monday, April 24 after receiving a phone call from the ER nurse at the local hospital in my hometown telling me that my 81-year-old father had been admitted with congestive heart failure. It just so happens that my 80-year-old mom was being transferred to a nursing home on the same day to address a damaged knee following a bad fall at my parents’ home the week before.

The past 15 days have brought much strife.

After local doctors confirmed that Dad’s heart was operating at minimal capacity, Dad was sent to a larger facility in a nearby town. More bad news followed. A heart catherization showed extensive blockages in two of his arteries, a leaky valve, and confirmation of a number of other heart issues that have grown worse with age. During the past week, Dad and I have sat at home counting down the minutes until he can go to a more sophisticated cardiac center for a needed, albeit risky, procedure.

In the meantime, Mom has continued to struggle with her injuries and with increasing confusion and signs of dementia. Once or twice a day, I set out for the nursing home to visit and field phone calls in-between visits to help Mom sort out where she is and what’s going on in our lives. We spend time arranging things in her room at the nursing home and talking about things we’ve done over the years–a visit to the Norman Rockwell Exhibit at the Birmingham Museum of Art, seeing the Rockettes Holiday Spectacular one Thanksgiving, our mother-daughter trip to Australia, and other memories that are ingrained in Mom’s mind.

Dad and I pass the days {and nights} talking, reading farm magazines (when he feels up to it) and writing (when I feel up to it), and watching television. Dad’s favorite channels are CNN for coverage of all things political and RFD (standing for Rural Free Delivery, the name of the postal service that delivered directly to rural areas). RFD shows address everything from crop yields to cattle feed to the pleasures of an agrarian life.

“All we watch is Trump and tractors,” I joked to Dad earlier today.

“Yeah, that’s about all there is,” he said with a smirk.

We both know that there’s so much more.

 

 

Science needs your cells

Tonight, the film adaptation of Rebecca Skloot’s book The Immortal Life of Henrietta Lacks debuts on HBO. The book is one of my favorites. The story of Henrietta Lacks (and her descendants) alongside the evolving discovery of the seemingly infinite replication of HeLa cells taken from Henrietta’s malignant tumor is brilliantly told by Skloot. And, the work effectively reveals the complexity of ethical decision-making when individual bodies are involved in the process of furthering scientific knowledge. My class in Writing and Medicine just finished reading the book, and  the students had much to say about the benefits and drawbacks of using discarded bio-specimens for research without patients’  full knowledge or permission.

Of course, in the story of Henrietta Lacks, issues of class and race influence how readers might interpret the use of one woman’s cells in millions of research studies around the world since the 1950s. In a story published in The New York Times this week, though, Holly Fernandez Lynch and Steven Joffe caution society against privileging individual autonomy over scientific progress. Simply put, human tissue–which is often disposed of following surgical procedures, anyway–is needed by researchers who seek to better understand how all of our bodies work and how to address those diseases that hinder us.  https://www.nytimes.com/2017/04/21/opinion/henrietta-lacks-why-science-needs-your-cells.html?emc=edit_th_20170421&nl=todaysheadlines&nlid=44005038&_r=0

I don’t know that there is an easy answer to the central dilemma explored in Skloot’s book. From an admittedly (selfish) academic perspective, that complexity is what most fascinates me about science and medicine.

No, Cosmo, No!

Cosmopolitan magazine screwed up big time. The publication sent out a tweet on Monday touting cancer as a route to weight loss.

Here’s a response from The Washington Post, a rant that I’d far rather draw attention to than the misguided message in Cosmo: https://www.washingtonpost.com/news/morning-mix/wp/2017/04/12/dear-cosmopolitan-magazine-cancer-is-not-a-diet-plan/?utm_term=.c4b2155779e2

As someone who’s experienced breast cancer twice in the last 24 years, I guarantee that enduring a grueling treatment regimen and looking one’s best don’t go hand in hand.

Where should we take you?

Years ago, when I started working with homeless cancer survivors in Birmingham, Rachael Martin, then-associate pastor at Church of the Reconciler, shared something with me that I’ll never forget. She said that when a homeless person needed immediate medical attention and an ambulance driver asked her where to take the individual, she always aimed high.

“They’re more likely to get better care at a place like UAB,” she told me, than at one of the less funded hospitals with fewer well-trained medical personnel on staff in the city. Rachael’s thinking was that even if a person lacking the necessary health benefits couldn’t stay at a more selective facility and had to be moved eventually, the initial triage care would be better and therefore boost the patient’s chances of getting the right diagnosis and initial care–and ultimately, of survival.

Today, a New York Times article reports on a study in PLoS that adds support to Rachael’s logic.  According to the researchers, patients at less credible institutions were “three times more likely to die” and a whopping “13 times more likely to [suffer from] medical complications” than those who were taken to the best facilities. The full article and link to the published study can be found here: http://www.nytimes.com/2016/12/14/business/hospitals-death-rates-quality-vary-widely.html?emc=edit_th_20161216&nl=todaysheadlines&nlid=44005038&_r=0

Maybe those in need of medical attention need to replace “Take me to the hospital” with “Take me to that hospital.” Unfortunately, for many of the least advantaged in our society, the question “Where should we take you?” is never asked.