Dr. Suzette Song, orthopaedic surgeon, "couldn't imagine doing anything else" until one day...

Suzette Song, M.D.

She was three when she decided to become a doctor; she wanted to be like her father. She excelled in her studies, made it through an interview for medical school, and Suzette Song, the future orthopaedic surgeon, was on her way, on a clear path, at 16.

She described herself to me as a “pure-bred” Korean. But her Korean father was born in Japan while her mother, also Korean, was born in China. After medical school in Seoul, South Korea, her father came to the States for an internal medicine residency in Morgantown, West Virginia. He practiced general internal medicine and took qualifying exams in endocrinology, cardiology, and gerontology. He was still running into the ER in the middle of the night in his 60s. He did not encourage his precocious younger daughter in her quest to become a doctor. 

But when she continued to say that this was her goal he tried to nudge her towards a specialty where she wouldn’t have to work quite as hard as he did, perhaps ophthalmology, or dermatology.  She listened to her father, of course, but still thought she might be an internist, like him. However, she had to wait for that unforeseen experience that would present her with her own personal calling.

Dr. Song’s mother was a pianist and Dr. Song’s (slightly) older sister Mimi followed her lead and is a fine musician. As we talked through our protective masks despite being vaccinated against COVID-19, I saw Suzette’s expressive hands. I noticed her slender delicate fingers. I asked her if she played the piano, too. She told me, flat out, and without regret, that she has little musical talent. It was clear that her manual skills and her dexterity were to be employed elsewhere.  

Suzette said that she and her sister “looked different” than the other kids in their elementary school outside of Pittsburgh and that they were often victims of hurtful racist remarks. “Where are you really from?” was the nasty response after she said she was born in West Virginia. The adults in the mostly white community were, of course, no better. The experience of being “the other” made her “tough” and “defensive.” And determined. 

Some American history is important here: We proudly call ourselves a nation of immigrants but xenophobia and racism are deeply embedded in our story. In colonial times, in fact, Philadelphia’s own Benjamin Franklin felt that German immigration was a grave danger to the English way of life. And over time, with various waves of arriving immigrants, the "other” changes, but the newcomers are almost always viewed with deep suspicion, with fear. So, restrictions are devised. 

The Immigration Act of 1917 halted immigration from most Asian countries and the Act of 1924 completely excluded those from Asia aside from the Philippines, then a US colony. People from other Asian countries were not permitted to enter the US legally again until 1952. The Act of 1965 ended national quotas set in 1920 and favored the immigration of professionals. As a result, Asian immigration to the US quadrupled in the next five years. 

President Johnson signing the 1965 Immigration Act
(from the AP)

The flow continued, and Asian-Americans were the fastest-growing ethnic group from 2000 to 2019. And hate crimes, hate speech, violence, and discrimination against Asians, especially Asian women, are sadly common and rose sharply during the first year of the pandemic. Dr. Song told me that, yes, she has continued to experience this.   

Getting back to our story, very competitive combined educational programs, including the one shared by Penn State and Jefferson Medical College (now Sidney Kimmel Medical College), have allowed young highly motivated students to obtain both a medical and a bachelor’s degree without the usual four years of college. Suzette (as usual, it seems) was in a hurry; she wanted to do that.

When she and her parents visited the campus and were given the standard tour at Penn State their guide had been in the program for two years. He was engaging, and his pep-talk was encouraging. He was so engaging, in fact, that Suzette soon “fell in love” with him (with future doctor Kevin Muzzio) and they later married.

At Penn State, she excelled in the microscopic study of cells and, as a sophomore, she taught a graduate-level course lab in histology. When she needed the required research job at Jefferson she hoped to be in Philadelphia for the summer with Kevin. Happily, she was offered a position in the molecular biology laboratory and she rearranged her schedule.

Dr. Eric Hume
(Penn Medicine)

Oddly, the lab was situated, she said, “inside the orthopaedic surgery department.” The new chairman, Dr. Richard Rothman, wanted to focus on research, so Jefferson bought the University of Pennsylvania’s entire molecular biology laboratory. So, for the summer, at 16, Suzette worked there under Dr. Eric Hume, whom she called, “the ultimate mentor.” She said that “he loved fixing people.” His special field was biomechanics. He studied how living bone responds to physical stress, how it changes its structure according to loading, how it adapts to what is needed. 

One day Dr. Hume took Suzette into the OR to let her observe him doing a case.  He told her that in orthopaedics “you get to fix stuff that people understand.” And as she watched him work she was transfixed. Her reaction? “Ahhhh! This is awesome!”  And, at that exact moment, at that instant, before even starting medical school per se, she “couldn’t imagine doing anything else.” And supportive Dr. Hume encouraged her.

As Suzette went through medical school and made friends with nearly everyone in the class of 220, including the 40 in the combined track with her, she kept her sights set on orthopaedics. She knew that ortho residencies were “super popular and very competitive to get into.” And she knew that there were very few women in the field. She often thought to herself: “Can I do this? Can I pull it off?”

The odds were against her. After the 1972 education amendment to the Civil Rights Act, including the Title IX gender discrimination section, the number of women graduating from medical school increased, tripling by 1980. But many surgical specialties remained underrepresented. In 1970 less than 1% of orthopaedic surgeons were women. By 2001 the figure rose to only about 4%. This was in comparison, say, to obstetrics and gynecology where, in the same span, the percentage of women increased from less than 5% to more than 70%.  

US Orthopaedic Surgeons
by gender and year (from AAOS)

As she studied, she ran many of the orthopaedic experiments in the molecular biology lab. She got to know the orthopaedic residents at Jefferson and saw that “they were happy” despite their heavy workload. And she saw, she knew, that she could compete with them. 

After medical school, Suzette was readily accepted into the ortho residency at Jefferson. By her second post-graduate year, she and Kevin were (without her parents’ knowledge) living together. At one point they had the penthouse apartment at the Ben Franklin House across the street from the main hospital at Jefferson in downtown Philly. 

She told me that “the windows would rattle'' as the noisy medevac helicopters slowed to a gentle touchdown on the hospital’s rooftop landing pad. Living there, she could get up before four and walk to the hospital to have her rounds done before the mandatory six o’clock (yes, six AM) conferences.  

Famous ballroom of the restored Ben Franklin, setting of
the courageous last scene of the 2012 movie "Siver Linings Playbook"
(from Michael Bixler) 

During her five orthopaedic residency years, Dr. Song had two special foot and ankle mentors, Drs. Paul Hecht and Keith Wapner. After her training at Jefferson, including at the Rothman Orthopaedics Institute, she did a year-long foot and ankle fellowship at the highly-regarded Hospital for Special Surgery in Manhattan (currently the nation’s top-ranked orthopaedic hospital according to the “US News and World Report”). She took the bus between New York and Philadelphia weekly to be with Kevin.

Paul Hecht, M.D.

But why did she decide to study the foot and ankle? She liked sports orthopedics (and really loves sports) but didn’t want to give up her Friday nights and Saturdays sitting on the sidelines waiting for someone to need her skills. Total joints were “too much inpatient work, too much rounding.” She simply didn’t like “hand” and she “didn’t want to do tumors” or spine (as many at Jeff did).

She saw the foot and ankle as a “biomechanically-based” functional unit with easily visible outcomes after surgery. Outcomes that her patients would immediately see and appreciate. Suzette (having, she admitted, a big ego) also liked the idea of becoming an expert and of being recognized as such by her colleagues. Yes, a subspecialty fellowship in foot and ankle was ideal.

Kevin was on his own track in academic medicine as he sought to be an internal medicine program director. As he attended conferences in the field he got to know some of the people in York (only about 100 miles from Philadelphia) running the medicine program, including Drs. Wolfe Blotzer and John McConville. 

Meg Figdore, M.D.

He was impressed by what he saw and took a position with the York Hospital. He started in April 1999 while Suzette was still training in Manhattan (at that point she needed to take the train to Lancaster to be with him).  She started her practice in October, only six weeks after giving birth to her first child, her son Ryan. (Ryan was carefully delivered by her steady Jefferson classmate and friend, Dr. Meg Figdore, despite ominous signs of fetal distress). 

Dr. Song said that her practice was busy from the start. As the new expert in the region, she was frequently asked to see patients with complex foot and ankle problems that needed additional surgery after a procedure elsewhere didn’t solve their problems. She often saw 40-50 patients a day.

A third of her practice, she told me, had to do with so-called posterior tibial tendon dysfunction. This “really strong tendon” runs behind the inside of the ankle and, amongst other things, maintains the foot’s natural arch. If the tendon is weakened by wear and tear (often hastened by obesity) or disease (such as diabetes, vascular insufficiency, or inflammation) “the whole foot falls apart, resulting in all sorts of structural problems,” she said.  The end result is now termed "adult acquired flatfoot." 

Illustration of adult acquired flatfoot
(from Todd Buck)

If this is diagnosed and treated early, surgery can be avoided. But if the problem progresses to complete collapse of the arch accompanied by constant pain surgery is needed, typically a combination of selective reconstructive and bony realignment procedures, or in severe cases partial foot fusions. 

When the ankle joint is damaged by severe arthritis causing chronic pain and instability the ankle may be fused with hardware (called arthrodesis) or replaced by an artificial joint.  It turns out that the ankle has been a particularly difficult joint to mimic with a prosthetic due to its complex mechanics and motions, but recent advances have made this more suitable as an option.

Radiographs of ankle fusion and joint replacement
(from seaviewortho.com)

Why are the ankle and foot so complicated? The change from walking on all fours to upright walking on two feet by our remote human ancestors evolved over eons. But the precarious bipedal gait of humans was likely present more than three million years ago as suggested by the fossil remains of one of our most famous relatives, the upright-walking but still-small-brained “Lucy,” (Austraopithicus afarensis). 

Reconstruction of Lucy
(My, what big hands you have, grandma!)
(from the National Science Foundation)

The grasping ape foot, fit for climbing trees, had to become, little by little, more rigid and stable, but also elastic to allow efficient and safe walking on two feet. So, foot and ankle anatomy and function are quite complex: the human foot’s thirty-three bones, twenty-six joints, and over a hundred muscles, ligaments, and tendons need to work together to keep us from falling flat on our faces.  

So, for 14 years Dr. Suzette Song, as part of the growing Orthopaedics and Spine Specialists group (then OSS Health) with their doctor-owned hospital, was “a pretty busy and productive surgeon.” She was the “only female (surgeon) in a big organization.” But she figured out the system, and worked within it to make her own practice run more smoothly, more efficiently (sometimes too efficiently, perhaps, as some of her patients, older women, felt that she talked too fast). 

Suzette had two more children after Ryan (again, with Dr. Figdore’s help), and everything was good. 

But she had no advance warning as something was to happen that would change her life forever. 

It was the end of February 2014. It was a routine Saturday. She was a bit feverish and her stomach bothered her. No big deal. She waited for something to ache, like having the flu. That didn't happen over the weekend, and she was baffled. Early Monday morning, still sick, there was repeated vomiting and she felt dizzy. 

So she called her secretary to cancel her hours for the day. Dr. Song felt poorly but really wanted to avoid the ER. She implored one of the nurses at OSS to come over to her house to give her IV fluids. Yes, she would feel better, for sure, when hydrated. But the experienced nurse saw that Dr. Song looked terrible: her blood pressure was unrecordable, she couldn’t think clearly, and at this point, her skin started to really hurt!  A trip to the busy ER was unavoidable.

Shortly after she arrived at the hospital her husband, who had been working there, made his way down to the ER to see her. Suzette’s blood pressure was dangerously low and she was in a lot of pain. Morphine would drop her pressure further, so she told them (yes, she told the staff) where they could find some (expensive) IV Tylenol (it wasn’t used).  They thought at first that she was septic. She had stat lab work and her liver enzymes were through the roof. She was sent for a CT scan of the abdomen. 

CT image of an acutely-failing liver full of nodules
(looking from below)
 (from Eurorad)

As things moved along swiftly she was told that she needed a nephrologist (her kidneys were failing), a GI specialist (for the liver thing), and a general surgeon (in case her belly needed to be cut open). She knew she was in deep trouble. 

Yet Suzette, the skilled surgeon faced with a crisis, thought methodically. She figured out in her mind who might be on-call and who would be the best doctors for her, and she made her choices known. When critical care specialist Dr. Richard Murray arrived at her bedside, she realized that she was really sick.

Kevin had never seen such high liver enzymes and he knew that his wife had life-threatening hepatic damage. A decision was made quickly: she needed to be transferred immediately to a center where she might, just might, be lucky enough to get a liver transplant before all hope was lost. Time was of the essence. When Kevin told his wife that she would be sent to Hershey by a medevac helicopter her response was: “What’s Hershey?” Her brain was failing.

Dedicated MEDEVAC helicopters to transport the wounded

were first used by the US during the Korean War, a "forgotten" war.

From 1950 to 1953 three million lives were lost, mostly civilian.

Virtually all of Korea's major cities were destroyed. 

(photo from "Olive-drab")

Dr. Song had “acute fulminant liver failure” (of unknown cause) and she needed a new liver without delay. Without it, she would certainly die. In fact, at one point as she was in the Hershey Medical Center ICU and intubated and on a ventilator and “couldn’t breathe,” she thought she was drowning. She thought that she “must be dead” already. And as she was getting chest physical therapy, as they pounded on her back to prevent pneumonia, she felt that she was being tortured and was in hell. (She thought she had been good; maybe she misunderstood the criteria for descending into hell, she wondered.) 

"The Damned Cast into Hell" painting by Luca Signorelli
(photo by Steven Zucker from smarthistory.org)

By Wednesday Kevin had to start planning her funeral. He contacted family and friends so that they could say goodbye to his wife. As she vaguely recognized the faces of those who made the trip to Hershey, people from widely different eras of her life, she was sure that she slipped into the hereafter. Why else, she thought, would all these people be at the same place at the same time?

She had been placed on the top of the transplant list, and by Thursday night they had found a donor liver. But it wasn’t certain that the organ would be suitable or that Dr. Song would even survive until surgery the next morning. It was a very difficult night for her family and friends, as they waited and waited.  And after Suzette underwent the delicate, meticulous, and long surgery (pioneered by the famed Dr. Thomas Starzl at the University of Pittsburgh in the 1980s), she didn’t wake up for a week. Would she be okay?

The damaged liver is removed and the new liver is

put in place and is carefully attached to arteries and veins. 

The surgery may last more than 12 hours.

(from transplantliverindia.com)

After three weeks in the ICU and time on dialysis for kidney failure she was so weak that she “couldn’t even roll out of bed,” she said. Her “right arm was mostly non-functional at first” and she had to “learn to walk.” She went home after seven weeks in the hospital. Her continued recovery was agonizingly slow. She was on three drugs to prevent rejection of the new liver, drugs that suppressed her immune system and increased her risk of infection. It was scary; she felt “vulnerable” as a patient. 

Dr. Song had to be hospitalized several times the year following the transplant and resuming her demanding surgical practice wasn’t possible. Even now, in 2021, seven years later, she still fatigues easily, has some weakness and loss of dexterity in her hands, and has tingling in her hands and feet when she’s tired or hot or cold. She had to find another way to continue her career. So, “plan B.”

As we have seen, Suzette had long had an interest in the “process” of her medical practice and tried to find ways to do things better. With the help of her (all male) partners at OSS, she was able to take this interest to a “system” level. But she said she had to learn new skills, skills that were somewhat foreign to surgeons, administrative skills. Skills such as listening, collaborating, and knowing how to “get people on board.”

She has the title of Vice President of Medical Affairs but spends most of her energy “on big projects” and “workflow stuff.” She tries to learn from previous mistakes. Though Suzette “absolutely misses” being in the OR her work now is rewarding as she can “help a lot of people” rather than just one patient at a time. For example, if she helps to lead process improvement on even one step of a total knee replacement at OSS she can have an effect on the lives of a thousand patients a year, she said.

The OSS Orthopaedic Hospital in York, one of ten various 

OSS facilities in the region

(photo from OSS) 

She carefully coordinated things at OSS, and also with the large WellSpan and UPMC systems during the early confusing months of the COVID-19 pandemic as clinical information changed nearly daily and governmental restrictions and mandates were imposed on healthcare facilities. 

(Though Dr. Song has received two doses of one of the mRNA vaccines against the SARS-CoV-2 virus her anti-rejection medicines blunt her immune response and she likely remains susceptible to the virus. So she continues to wear a mask, and a personal air purifier and ionizer dangles from a delicate cord around her neck for added protection and peace of mind.)       

And in her newer role, her second career, and over time, and from her own experiences, she has learned to view things from the standpoint of the patient. When she took her mother to see her mother’s oncologist, Dr. Amir Tabatabai, he gently asked Mrs. Song if she would allow him to examine her. Suzette was moved by this simple act of asking permission. She sensed that this is a way medicine could be practiced: focusing on the patient, unrushed, unhurried, slower. And she saw that medical care could be standardized without being dehumanized, she told me. 

Kevin

So, after practicing an intricate orthopaedic subspecialty for 14 years, Dr. Song nearly succumbed to acute liver failure of unknown cause. A fortuitous organ transplant saved her life, and she embarked on a new vocation, helping steer her male-dominated orthopaedic group toward being better at what they do. But efficiency, she clearly sees, is secondary to taking the time to address the needs of the patient as a unique person. It might be said that she has embraced the goals of a good internist, of a good doctor, somewhat like her father.   

By now, it was late in the afternoon, and after a few hours of telling me her story, it was time for Suzette to return home to Kevin. It was Sunday, and he would be making Korean grilled steak.   

Readings:

1. DeSilva, Jeremy. First Steps: How Upright Walking Made Us Human.Harper Collins. New York, 2021. (The author makes the case that "bipedalism could have evolved only from a lineage that had developed the capacity for tolerance, cooperation, and caring for one another."  He watched a foot and ankle surgeon at work and was impressed. The skilled orthopod was Dr. Paul Hecht!) 

2. Jensen K. Henry, MD, Rachel Shakked, MD, and Scott J. Ellis, MD. "Adult-Acquired Flatfoot Deformity" Foot & Ankle Orthopaedics 2019, Vol. 4(1) 1-17  (Review of the foot problem that made up a substantial portion of Dr. Song's surgical practice; from the departments of Orthopaedic Surgery at the Hospital for Special Surgery and the Rothman Institute, places she knows well.)

 

"Grey Coat and Pink Hangers" (photo by AC)

by Anita Cherry 6/27/21

Dr. Carlos Roberts says: "I Am I Because You Are You"

 

Carlos Roberts, M.D.

“It’s okay, I’m right here. You are going to be doing this delivery,” said the midwife to the third-year medical student as she calmly reassured him. The student was on-call on the first day of his first clinical rotation. He was “happy to be there,” sure. But, at the time, he had “zero interest” in obstetrics. He listened to the expert, however, and with steady coaching he performed the delivery. As he saw “a human” emerging from the mother’s body, as he saw “life born of life,” at that moment, Carlos Roberts knew what he was going to do as a doctor.

On a cold day in mid-February, the expected winter storm stayed to the south of York and Dr. Carlos Roberts stopped by as promised to tell me his winding story. Carlos is from Trinidad and Tobago, a warm Caribbean two-island nation just off the coast of Venezuela, part of the West Indies. He traces his lineage to the East Indies, to India, along with about forty percent of the population of Trinidad. 

How was that? The island, claimed by the Spanish, was sparsely populated into the late 18th century. In 1777 Spain lured French planters from nearby islands to immigrate to Trinidad, and to bring their African slaves (mostly men)  with them. In 1797 Spain surrendered to the British (without a fight) and Trinidad became a British crown colony. The population then consisted of about 2,000 white individuals, 4,500 free people of color, 1,000 Amerindians, and 10,000 African slaves.

Map of the West Indies, with Trinidad the southernmost
 and considered part of South America (from nationsonline.org)

When the British abolished slavery in 1833, the slave owners were deprived of their major workforce and there was a need to find cheap labor to harvest the sugarcane, a back-breaking task. The solution was to coax individuals from India to be employed for a specified period of time (at least five years) and for low wages as indentured servants. 

They were promised that after the end of their tenure, they could receive return passage to India or they would be granted a small piece of land. The long journey from India was dangerous, the work conditions on the island were harsh, and the illness and death rates were high.  

Carlos said that his paternal great-great-grandparents were persuaded to be shipped to Trinidad from India under the indentured servant program. After their years of required service were completed they chose the offer of land, and they raised a very large family.  

While Carlos knew that his father’s background was fully East Indian, his mother’s story was “a little bit unknown.” That is, until recently. By testing his own DNA, he found that his mother’s line is British, Irish, Scottish from her white mother, and Nigerian plus other African countries, from her not-white father. So Dr. Roberts is half-East Indian and half-other. He is, as he said, “mixed.” .

His father’s mother was traditional and did not approve of her son marrying a non-Indian. His father’s father, on the other hand, was welcoming.  Carlos told me that his Indian paternal grandmother “never once in her entire life,” never once, called him by his name; she always called him “Boy.“ You see, unlike his two sisters and his brother, he looked “different.”  There was awareness of "other."

But there was an unusual twist to the racial hierarchy in Trinidad. Because the (white) British (on top) feared an uprising of the much more numerous (black) African slaves (on the bottom) after their emancipation, the (brown) Indian indentured workers (placed in the middle) were automatically installed as officers of the law to help maintain the order, to prevent an uprising by those below. A defined order was set by color: white, brown, black. There a racial ordering.

Ethnic Makeup of Trinidad and Tobago
(from Encyclopedia Britanica)

Considering race and caste: In his study of capitalism and slavery, the economics of the island plantations, Eric Williams, noted historian and the first Prime Minister of Trinidad and Tobago, concluded that racism was a consequence of slavery. He saw that "white servitude was the historic base upon which Negro slavery was constructed...(as) unfree labor in the new world was [at various times] brown, white, black, and yellow; Catholic, Protestant, and pagan.” In Tobago before 1833, (as in the American colonies from 1619 until 1865) “the money which procured a white man’s services for ten years could buy a Negro for life” (Willams, p.19); cheaply-purchased slaves from Africa made good economic sense. But the human cost was enormous.

Let's get back to our story. The “mixed” Roberts family lived in Port-of-Spain and they were of “humble means,” said Carlos. His father, like many in the large extended Indian family, was a civil servant, a city hall clerk. He was “a stickler for education.” Success was “becoming a professional,” a doctor, an attorney, or an engineer. The younger of his two sisters, an engineer, was the first in the family to get a college degree. His other sister studied accounting. Carlos was the first to become a physician.

Once he decided that he wanted to be a doctor, the next question was: “How do I do that?”

Besides being a good student with a true photographic memory, he was a talented sportsman. In fact, he represented Trinidad and Tobago in field hockey at the Central American and Caribbean Games. The strong team won a silver medal at the 1993 games in Ponce, losing to powerhouse Cuba in the finals.  Maybe, he thought, maybe he could parlay his athletic skills (he excelled in soccer, too) into a ticket to college in the States, and then on to medical school.

1993 CAC Games men's field hockey results (from Tudor Krastev)

So he was excited when he was offered a scholarship to Bloomsburg University. Tuition was covered, but room and board were not. His father said he couldn’t afford that, and young Carlos reluctantly gave up that opportunity. 

So he stayed in Trinidad after high school and worked in a public library and at the Carib Brewery, biding his time. It was “a challenge to get a visa” to come to the States. He took advantage of the chance to travel as a member of the national hockey team for a tournament at Drew University in Madison, New Jersey.   

While here on the visa in 1995 he stayed with his uncle in Brooklyn, home to many immigrants from T and T. So Carlos called around to the schools that had offered him scholarships before. He took winding bus rides to Bloomsburg (the bus caught on fire on the return trip to New York) and West Chester, both in Pennsylvania. And he looked at St. Francis and St. John's in New York. He was accepted to St. John’s on a soccer scholarship after a trial as a walk-on, but he could go only if he could pay his own way for the first year. Of course, he could not. Another disheartening setback.

Friendly Nostrand Avenue restaurant in Trinidadian Brooklyn
(from Museum of Food and Drink)

But he was not about to give up, no, he would not return to Trinidad and Tobago; he would make it work “somehow.”

He needed to stay in the States. His uncle’s wife was “a wonderful lady” who taught at Hunter College. Her mother had advanced ovarian carcinoma and Carlos helped take care of her. As an essential caregiver, he was allowed to extend his visa.  He did odd jobs and worked as a laborer for a few years swinging a heavy sledgehammer and knocking stuff down. And he waited. 

Things began to look up after he started working as an assistant to the owner of a small New York real estate company. And as he made enough money for college he could enroll at St. Francis in Brooklyn Heights. His boss recognized his potential and offered to pay his tuition if he worked full-time. So Carlos got up early, took classes until noon, studied on the train, and did real estate until nine or ten at night. 

He was on track and sailing along when he got a surprise call from the soccer coach at historically-black Lincoln University in Missouri. A team member had recommended him to the coach.  On this sole recommendation, Carlos was offered a scholarship; no try-out needed. But he was now comfortable in New York; what should he do?

He told his Trinidadian girlfriend, Kesha Baptiste (now his wife), of his dilemma and she felt that he needed to get out of New York.

Kesha

How did Carlos end up with such a “brilliant” girlfriend? He said that he and Kesha met once at home on the island, but they “didn’t click,” and nothing happened. Then one day in New York after a messy soccer session his buddy said he wanted to visit a friend. Carlos, all muddy, drove the company truck to this friend’s house. They knocked on the door, and Kesha (who was studying at Juniata and was visiting her mother) answered. Well, wouldn’t you know, Carlos was immediately attracted to her, and she was attracted to him. 

The visitors stood at the door a while, then left, at which point the smitten one simply told his pal that the girl in the doorway was going to be his wife. His unbelieving friend said, ”You don’t have a chance in hell.” But Dr. Roberts knew better. He had already seen the image of her face in his mind’s eye one day when he was sensing that it was time to get married.

Kenny Sattuar

So Kesha, the wise girlfriend, encouraged Carlos to make his next career move. Hearing this, his real estate mentor in Rosedale, Kenny Sattaur, was disappointed. He had seen potential; Carlos was a “hard worker,” and might be “the next real estate mogul.”  But the idea of being a physician had always been the young man’s “passion“ and he needed to move on. 

What did Mr. Sattaur do then? He decided to celebrate! He took Carlos and Kesha to Ruth Chris’s on Long Island, where Dr. Roberts had his first-ever steak. And then (wait for this...), Kenny then said he would continue to pay Carlos his weekly wage for the next year as he went to Lincoln to finish his college degree.

So, Carlos moved on. He studied hard and played soccer in Jefferson County, Missouri. It was “a very interesting place,” he said, with some irony. During the last game of his first season, he tore his ACL and needed surgery. He did quite well in his studies and qualified for an academic scholarship. He took this and gave up his athletic ride so the coach could build the program by recruiting another good player; someone else could be given a chance.  

Carlos recovered from surgery and continued with the team. One day they played against Missouri University in Rolla. To say it kindly, the small (and 87%-white) town between Springfield and St. Louis was not very progressive.  The home team was all white, as were their vocal supporters. During a throw-in, he heard a spectator shout, “Why don’t you go back to the cotton fields and pick cotton?”

He did not get upset with the players on the field or the crowd, but it suddenly occurred to him that his mother had been making a derogatory comment as she would say to him: “You need to shut your cotton-pickin’ mouth.”

Carlos had never experienced overt racism before; connecting it in his mind with what his mother said hurt terribly.

He felt overt racism again in a match in Kentucky. The Lincoln goal-keeper, Dustin Carney, was upended by an opposing player. No red or yellow card was thrown. Carlos, as the captain of the team, approached the official and asked why this obvious infraction wasn’t carded. The official looked away and spat on the ground. A melee of sorts ensued and the game was called. The naked complicity of those charged with ensuring fairness on the pitch, keeping a level playing field, was too much for Carlos to bear. Institutional racism.

Mara Aruguete, PhD

Despite the few racially charged incidents, he said he got “a tremendous education” in Missouri.  His research mentor was psychology professor Dr. Mara Aruguete. She took him under her wing and they published several papers together on the effect (or non-effect) of race on the patient-physician encounter. She helped him get into medical school and they still stay in touch.

The acceptance to medical school, the hoped-for letter, the letter saying, “We are pleased…” is anxiously awaited by all eager applicants, and Carlos Anthony Roberts was no exception. His dream was to go to historically-black Howard University, the alma mater of the previously-mentioned Eric Williams. Yes, going to Howard would be nice.

So he applied to several schools and waited. He was happy enough when he received the acceptance from Lake Erie Osteopathic Medical School. But he heard nothing from Howard, his first choice. As he was waiting he had to send LECOM fifteen hundred dollars to hold his spot in the class. Carlos didn’t have fifteen hundred dollars. He went to Dr. Aruguete; he needed advice from his advisor.

Her immediate answer: “I’ll write you a check now. You don’t have to pay me back.”  With gratitude, Carlos immediately went to the bank, deposited the gifted check, wrote his own and mailed it to Erie, and headed home. When went through his mail (you guessed it) the acceptance from Howard was sitting there. He put a stop to the mailed-in check and returned the money to Dr. Aruguete.

Unbeknownst to our protagonist, Kesha, who, like Carlos, was in the States on a temporary student visa, had quietly entered the Green Card lottery. She received notice that she was one of the winners the day after Carlos got his news from Howard. Timing. (Of those who apply each year, less than 1% receive a card.)

Borat's Permanent Resident Green Card

While this medical school application-stuff was going on in Jefferson City, Missouri, Kesha was studying for her Master’s in public health in St. Louis. She traveled back and forth on weekends. When they decided that it was time to get married Carlos feared that his “traditional” mother might discourage him, so he chose not to tell his parents of his intent. 

So, in 1998 they had a small wedding on campus. They bought a cake and boxed wine from Walmart, her mother’s friend made Kesha’s dress, Kesha’s mother cooked the food, Carlos rented a Tuxedo for a day, and his roommate and co-captain of the soccer team made the VHS video (complete with unwitting commentary). In attendance were his older sister’s son and a cousin from Trinidad whom he had bumped into while at St. Francis.“It was an amazing day,” said Dr. Roberts.

After Lincoln University in Missouri, he went to Howard in D.C. where he “met a lot of great people,” including the steady midwife who helped him with his first delivery at Prince George’s Hospital. As he considered a specific course in medicine, he thought about going into orthopedics because of his sports background. But after he nodded off, actually fell asleep, during one of the operations with hammers and saws, a hip replacement, he let that idea go. Dr. Roberts said he preferred more intricate and complex surgery, and his experience during his first rotation guided him to obstetrics and gynecology.

Founders Library at Howard University in the spring
(from Howard University)

After D.C., he returned to Missouri to start his OB/GYN internship and residency at St. Louis University. He thought he could be with his wife; she finished her MPH and they both liked the city. However, Kesha was not done. She followed her own path and she was, by then, at Johns Hopkins in Baltimore working on a Ph.D. in cardiovascular epidemiology. 

While 800 miles apart, they wanted to start having kids.  So when Kesha called him one Thursday night during his internship to announce that she was ovulating, Carlos went into action.  

The National Pike in 1850: From Baltimore to St. Louis (by 1838)
The first national road and the most heavily traveled road
in America at the time (from heraldstandard.com)

He rearranged his call schedule so he didn’t have to be back until Sunday and rushed to book the cheapest flight possible on Friday evening to BWI. He used Priceline.com. He and Kesha spent the weekend together and their first child was conceived, with a little help from William Shatner, alias Captain Kirk (help for the flight, that is, not the conception).

(There is good evidence that women are most fertile the five days before ovulation since it takes a while for the sperm to find the egg. Maybe some men have more athletic spermatozoa, more determined swimmers. Who knows?)

Anyway, when his wife was then offered a post-doc fellowship at Hopkins she wanted to take the opportunity, but not with her husband back in St Louis; he would gladly make the effort to move closer to her program.

A friend from Howard, Tommy Kimble, was doing his OB/GYN residency at York and told Carlos that he was in luck: there was an unexpected open slot for a second-year OB/GYN resident for the upcoming year.  

Speaking of “luck,” of which Dr. Roberts seems by now to have had an unusual abundance, he feels that this is mostly “opportunity and preparedness meeting in the same space.” It is what you do with what has been given, with what has been presented.

Getting back to the meandering story: Dr. Mary McClennan, one of the faculty in St. Louis, was friends with Dr. Marian Damewood, the head of the program in York, and they spoke. Carlos had already interviewed at York and he was readily accepted as a second-year resident.

After a night on call, he drove to Southcentral Pennsylvania the next day to start the year. He and his wife bought a house in downtown York and they lived there through his residency. 

When Kesha’s water broke early one morning and she went into labor she turned to awaken her husband. He was scheduled to be on call that day; he had hoped to do the delivery, but he had to work. Yet, he might still be able to help bring his daughter into the world. But as his wife’s labor progressed there were signs of trouble. The baby’s heart rate slowed. The father’s heart rate quickened. And the more experienced Dr. Kathryn Hassinger did the complicated vacuum and forceps delivery. Their second daughter, born in 2008, had an easier time of it; she was an elective C-section baby.

Leonardo da Vinci's 1511 "first in history" 
accurate depiction of the fetus in the womb

(We see, of course, that giving birth, bringing someone into the world, is not easy. We see that women need help. That assistance is required for the survival of the species. According to Karen Rosenberg and Wenda Trevathan, “the complex twists and turns that human babies make as they travel through the birth canal have troubled humans and their ancestors for at least 100,000 years” and maybe for as long as “three or four million.” The problem stems from our upright stance, with a change in the shape of the pelvis, our big-brained heads, and the “limited motor abilities of the relatively helpless human infant.”)

After his residency Carlos wanted to do a fellowship in gynecologic oncology, a decision influenced by having cared for his aunt’s mother with ovarian cancer. So he spent an intense month at Memorial Sloan Kettering (MSK) on the Gyn service. He never got more than four hours of sleep, but it was, he said, “the most exhilarating experience.” 

Though he “didn’t enjoy end-of-life care,” he applied to MSK and Hopkins for three or four years of oncology training. These top programs were extremely competitive and Carlos was not offered a position. He was disappointed, but his residency prepared him to be a generalist, and that was “okay.” 

So he went to several of the talented mentors of his residency, Drs. Detlef Gerlach, Dennis Johnson, and Jay Jackson, and offered them his services. They didn’t have a ready-made spot for him but eventually made it work, and Dr. Roberts practiced general women’s health care for five years.  As he saw women suffering from urinary dysfunction associated with other pelvic problems, and found that he could change their lives, he decided to train further. 

Dr. Vincent Lucente

So he did a formative year-long fellowship in urogynecology with Dr. Vincent Lucente at St. Luke’s University Hospital in Allentown, a pioneer in minimally-invasive surgery for urinary and fecal incontinence due to pelvic floor disorders. 

When Dr. Roberts returned to York, he took over the urogynecology practice of Dr. Leslie Robinson.  He said that he “loves” being in the operating room (like all good surgeons) and helping women “get their lives back” as they are no longer hampered by embarrassing incontinence and related problems.

One of the most disabling of these conditions is that of a fistula, a connection, a tract, an opening, between the bladder and the vagina resulting in continuous leakage of urine. In the past, it was caused by so-called obstructed labor due to pressure of the baby’s too-big head against the bladder. It is now most often an accidental complication of surgery.       

A bit of gynecologic surgical history is needed: In 1852, American surgeon James Marion Sims (1813-1883), of Montgomery, Alabama, reported on his surgery for transvaginal fistula repair in three blacks slaves, Anarcha, Betsy, and Lucy. The slave owners lent (yes, lent) him the three young women for the period of treatment. They were kept in a shack behind his house and he subjected them to a total of 42 painful surgical procedures, all without the benefit of anesthesia, over the next four years. Only Anarcha's surgery was successful (and after 30 tries). Sims is known as the founder of urinary fistula surgery and the father of modern American gynecology. A 14-foot statue of him stood in Central Park from the 1890s until it was removed in 2018.

Painting by Robert Thom for the Parke-Davis
"Great Moments in Medicine" series
(Anarcha is kneeling on the table)

Urogynecologic specialists now use a variety of non-operative and minimally-invasive or robotic-assisted approaches to alleviate this devastating condition with much less trauma. (While it is relatively rare here now, it remains a major health issue in developing countries, mostly in sub-Saharan Africa.)  

Dr. Roberts said that the care for a woman with incontinence, and, in fact, of a woman through her reproductive life, and as her daughters have children, is no longer provided by a single person. He said that this now is “compartmentalized” and that there are “many more people touching that individual than in the past.” 

There are positive aspects to specialization, sure, but he is concerned that as care is fragmented we “may lose some of the doctor-patient relationship.”

He sees this relationship as a tricky one in our consumer-driven health care system. Old-fashioned paternalism is frowned upon, of course. But true shared decision-making, he thought, the collaboration between the doctor and the patient, could be likened to, perhaps, “paternalism with more information.”   

And Carlos hopes to be able to be good enough to adequately train the physicians who will someday care for his wife and two daughters. And to pass that goal on to the following generation of doctors, and so on. He said that “when you’ve been helped so much in your life you have to pay it forward.” He fears that if this doesn’t happen, medicine as we know it “will die on the vine, and that will be a miserable death.”

This sentiment led Dr. Roberts to read me something he wrote about his personal journey. He titled it “I am I Because You are You” and sent it to several of his mentors. Standing in front of a mirror looking at himself he saw his evolution as a physician. He saw himself at different ages. But as he felt the passage of time and stared at his reflection in “the mirror of life” for a while he no longer saw his ancestral biological lineage. Instead, he saw “the tapestry that has been carefully woven by those that have taken the time to inculcate the best parts of themselves” in him. He thanked them for their “munificence,” for their generosity.

These thoughts echo the South African social philosophy of Ubuntu: "I am because you are." Or as formulated in the Zulu saying: "A person is a person through other people." In our relationships with others, through intimate I-Thou dialogues, we create each other.

Dr. Detlef Gerlach

And Carlos still stays in contact with many who helped create him along the way. For example, he receives a Christmas card complete with cramped hand-written scribbles from Dr. Aruguete each year as she keeps him abreast of things in St. Louis. And after he gave up soccer a few years ago Dr. Gerlach (he’s now retired) got him “hooked” on cycling and took him to get his first bike, introducing him to the incredulous shop owner as his “son.”

Dr. Roberts encourages his daughters, like every good father does, to think critically, to read widely, and to “seek out and validate information” for themselves. (I am certain their professor-mother encourages nothing less.)

So, looking ahead, I imagine a recurring scene: Dr. Carlos Roberts quietly standing off to the side of an expectant mother in labor as he coaches a nervous student on the first day of her OB rotation: “It’s okay, I’m right here. You are going to be doing this delivery.” 

References and Further Reading:

1. Anon. Indentured Labour from South Asia (1834-1917) https://www.striking-women.org/module/map-major-south-asian-migration-flows/indentured-labour-south-asia-1834-1917.  

2. Reverby, Susan M. "Memory and Medicine: A Historian's Perspective on Commemorating J. Marion Sims." AHA Today, American Historical Association Sept. 17, 2007. (Ideas of what is acceptable, what is ethical, in medical research, in how people are to be treated, evolves.)

3. Rosenberg, Karen and Trevathan, Wenda. "Birth, obstetrics and human evolution." BJOG 2002 Nov; 109(11): 1199-1206. (Midwifery may be the very oldest "medical" profession.) 

 

4. Wilkerson, Isabel. Caste: The Origins of Our Discontents. Random House. New York, 2020. (A well-told, far-ranging, and painful story about the lasting consequences of systemic dehumanization of the "other" in India, Nazi Germany, and the United States.)  

5. Williams, Eric. Capitalism and Slavery. University of North Carolina Press. Chapel Hill, 1944.

6. Eze, Michael Onyebuchi."I am Because You Are: Cosmopolitanism in the Age of Xenophobia." Philosophical Papers, 46:1, 85-109, 2017. (A discussion of the philosophy of African humanism that stresses the importance of community, of "fellowship.") 

Male Red-winged Blackbird at Lake Williams (Spring 2021) (SC)

By Anita Cherry 4/25/21

Dr. Dominic Glorioso Shares his Life, and his Thoughts on Palliative Care

Dr. Dominic Glorioso

"The end of life." A difficult sentence for me to write, and to think about. Wondering what stranger will be there to greet me when events threaten my intactness is hard to imagine. And who will be there for the next shift. No-one knows me; how could they?

Yet, as we approach death we want others, even total strangers, to know our story. We want them to know that we mattered, to know that our one unique life meant something.

And we want them to know the long version. The version that only we can tell. We need a witness to hear the story filled with words, and with commas, semicolons, ellipses, and periods. And the one with blank, wordless spaces. The slivers of empty space that help tell the full story. 

In these quiet private wordless spaces, the life of a human being and its meaning is created. You see, we need, in the end, before it’s all over, to be known as who we actually were, not just who others thought we were. But maybe, just maybe, we won’t be surrounded by strangers in a cold hospital room. And maybe our suffering will be softened.

The deeply emotional and complicated end-of-life issues are particularly relevant for physicians who specialize in hospice work and so-called palliative care. Dr. Dominic Glorioso is one of those physicians who chose this path (or did it, as we will see later, choose him?). I asked him to tell me his story.

His first Internal Medicine job after medical school and residency was in Pensacola, Florida, as he accompanied his wife Dr. Barbara Caton for her Navy posting. His second job, fulfilling his three-year Public Health obligation, was in Paterson, New Jersey. He started there in 1989. He said that “there was a lot of HIV” as the pandemic was developing. He worked mostly with a poor inner-city population and almost all of those with HIV/AIDS were IV drug users. Sadly, he reminded me, “HIV was a death sentence.”

The well-known AIDS quilt memorializes those who have died over the years due to the HIV virus. With morethan 48,000 panels, is felt to be the largest community art project in history.

The massive AIDS Memorial Quilt displayed in D.C.
 (from NIH/Wikipedia)

The well-regarded infectious disease specialist at St. Joseph’s Hospital was Sister (Dr.) Mary Christine Reyelt (1946-2008), a Catholic Sister of Charity. She needed help and she asked Dr. Glorioso to assist her in the care of her terminally-ill patients who were suffering. Suffering due to unremitting pain, severe depression (with social stigma and isolation), striking weight loss, and abject fear.   

At that time “everything (for pain) was Demerol and Vistaril IM,” said Dominic. There was very little written about how to control pain in patients who were opiate abusers, so he had to teach himself symptom control in this trying setting. And he realized that he had to be better at communication to be able to help his patients effectively.

After his three-year public health obligation was met he could leave. But he signed up for more, and he spent a total of eight years in Paterson and (for a short while) nearby  Denville. Dr. Glorioso told me that it was at St. Clare’s Hospital in Denville that Karen Ann Quinlan, the young girl in a persistent vegetative state, with no hope of recovery, had first received care. Her sad case resulted in a landmark 1976 New Jersey Supreme Court decision that, in part, triggered the "right to die" movement and led to the formation of ethics committees in hospitals around the world.

Sure, the work in New Jersey was intense but “it was fun, in a sense,” he said. And he learned a lot. When he was leaving Paterson he told Sister Reyelt that he would miss taking care of AIDS patients. She quietly assured him that there will always be patients in need. Thus, the seed of his future work in palliative care was planted.

Paterson, itself, was a bit foreign to Dom. He was raised in the suburban town of Lansdale, just outside of Philadelphia. After Catholic high school, he went to LaSalle, a small private Catholic school in the city, west of North Broad Street. He graduated in 1978 and then went to the Philadelphia College of Osteopathic Medicine, on City Line. Paterson, N.J., "the cradle of the industrial revolution in America" (according to Wikipedia) was very densely-populated and mostly non-white. So Dominic was immersed in an entirely different culture than he was accustomed to.

The 77-foot Great Falls of the Passaic River in Paterson
 (from Naturalatlas.com)

He said that he was “one of only two Caucasians” in a staff of 60 or 70, including about a dozen physicians. He said that as you got to know the people, “there was no Black or white, just people you were working with.” Reflecting on this, he felt that “everyone should be in a minority at some time in their life.” 

       

What was Dominic's background before that? All four of his grandparents grew up in Southern Italy before emigrating to the US through the (contract labor) patrone system. His parents were both born in the outskirts of Philadelphia and they raised their sons in the strong Italian immigrant community of Lansdale. His parents were factory workers and “pushed” Dominic and his brother to pursue higher education. Dominic listened, and he and his twin, Thomas, were the first in the family to go to college.

His father, Dominic Sr., served in WWII and received a Purple Heart.  His mother Angeline was, according to her family, “a wonderful cook.” His father died at 87 on December 11, 2006; his mother passed away at 85, ten weeks later. They were both residents in a nursing home. (I wonder, was his mother’s death due to Takotsubo, the broken heart syndrome? Or, in Italian, morire di crepacuore?)

Dominic told me an interesting side-history. He said that many Italian immigrants came to Ambler from Maida, Calabria, to work for the Keasbey & Mattison Company, manufacturer of asbestos building products of all sorts. The small community thrived and became the asbestos capital of the world. After a while, highly skilled stonemasons were brought over from Southern Italy to help build the so-called Lindenwold Castle (modeled after Windsor) for Mattison, a chemist/pharmacist, and one of the founders of the company. 

Mattison's fancy Lindenwold Castle (from Wikipedia)

After Mattison’s death in 1936, the 43-acre property was purchased by the Sisters of the Holy Family of Nazareth. It was first used as an orphanage, and then, until 2013, as a home for abused and neglected youth. It also served, said Dr. Glorioso, as the Pennsylvania Catholic boarding school setting for the 1966 Rosalind Russell/Haley Mills comedy “The Trouble with Angels.” As we speak, it is being developed into a luxury senior living complex to include independent living, assisted living, and memory units with (get this) an indoor pool, fitness center, yoga studio, two movie theaters, indoor and outdoor dining venues, bars and lounges, barbecue grills, a dog wash and dog run, an art studio, fire pits, and a putting green. (Times have changed.)

June Harding, a mesmerized Hayley Mills, and the stern Rosalind Russell
from "The Trouble with Angels" (from quintessenceblog.com)

Anyway, back to Dominic. It was one of his Lansdale Catholic teachers who encouraged him to go to LaSalle. He had an interest in medicine, so he studied biology, but he said that he “would have liked to be an English literature major.” 

And he told me that he still enjoys reading “a little of everything” both fiction and non-fiction. He recently read, and highly recommended, Isabel Wilkerson’s “The Warmth of Other Suns,” the story of the slow migration of six million Blacks from the South to the North and West from 1915 to 1970 that changed America.  

Routes of the Second Great Migration
(along the railways)  (map by Michael Siegel)

Anyway, from LaSalle, the next step was medical school. The decision about where to apply was strongly influenced by his family’s doctor, his father’s friend, Dr. Edwin “Tex” Detwiler Jr. (1946-2018).  He had trained at the Philadelphia College of Osteopathic Medicine (PCOM) and Dominic, being “familiar” with the osteopathic approach, decided to go there as well. 

Dr. Glorioso recalled that during his internship (1982-1983) at the Parkview division of Metropolitan Hospital he was taught by Dr. Alvin Greber. Dr. Greber (1933-2013) was a noted cardiologist, and Dom felt that he was “the most brilliant doctor” he ever met (though he got himself into some serious legal trouble for a while). 

John Simelaro, D.O.

Dominic stayed at PCOM for a three-year General Internal Medicine residency where he learned a lot from “the brilliant” and fun-loving and dedicated educator and pulmonologist Dr. John P. Simelaro. Dr. Glorioso was struck by the fact that Dr. Simelaro (who reminded him of “The Fonze”) and his partner Dr. Michael Venditto were “so human.” He said that they worked extremely well with the students and nurses; they connected. Dr. Glorioso lamented that it seems now that “we’ve lost our ability to communicate.”

This story about those who taught him led him to tell me that as he is serving as Associate Medical Director of Asana Hospice in Harrisburg he is also (in his mid-60s!) a Ph.D. candidate at Duquesne (another Catholic institution). He is studying bioethics and has written research papers on suffering and medical futility. He found (though he already knew) that physicians sometimes have trouble being honest and truthful with patients and families at the end of life when it seems that nothing more can be done.      

And, as has been noted, it is when “nothing more can be done” that the idea of providing palliative care is raised.

What is palliative care? According to the WHO, “it is an approach that improves the quality of life of patients and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial or spiritual.” It addresses all of the needs of the patient. And it requires a team. 

Palliative care--Hospice or End-of-life Care--Terminal Care
(from closingthegap.ca) 

Dr. Glorioso taught himself how to do what was essentially palliative care (without the formal name) in New Jersey with the terribly-suffering and dying AIDS patients. As we saw, he was happy and stayed there for a good while. How did he make the transition to York?

Dom with his wife

It was through a friend, Dr. Steven Karp, a psychiatrist in York (now an addiction specialist in Arizona). Dr. Glorioso was recruited to help start a medical practice. Dominic visited and liked what he saw. So, in 1997, he, his physician-wife, and their two young daughters moved to Southcentral Pennsylvania. He did general internal medicine and some work in palliative care, building on his experience in Paterson. His wife joined a Family Medicine group.

In 2003 Dominic was asked to be the medical director at the local VNA hospice. And his career has been in hospice and palliative care since then.

After additional training at Harvard, he became a strong local and national advocate for the palliative care approach to terminal illness. He feels  that “we are not taking as good care of our patients as we should (as they face death).”   He told me that for the treating physician ”it is easy to keep doing what you are doing (for their patients) until they die...avoiding the discussion of death (altogether).”  And maybe offering costly futile treatments that result in needless suffering.

  

An online article on Vox by Dr. Haider Warraich, a cardiologist, was enlightening. He noted that more care, more procedures, and more tests, simply more, doesn’t equal better care. And he said that it has been shown that patients with cancer or heart disease who receive palliative care, care that “focuses on quality of life rather than quantity of life can actually live longer.” And they may “avoid the complications associated with procedures, medications, and hospitalization.”  

Dr. Warraich believes that “palliative care can, and should be delivered to patients with serious illness alongside conventional care.” He feels that this “supportive care" (to use a less emotionally-charged word) is in everybody’s best interests, all physicians, not only the very few specially-trained palliative care experts.          

Dr. Glorioso said that “we have avoided the conversation (about death) for way too long.”  And that it is vital for us to talk to our doctors and family members about what we desire for ourselves as we approach that. We need to communicate openly before it’s too late. 

He said that with this in mind we should all have a comprehensive advance directive. Jim Towey worked with Mother Teresa in her hospice in D.C. and developed the “Five Wishes” document. This outlines who will make decisions if we cannot, what kind of medical treatment we desire, how much comfort is expected, how we want to be treated by others, and what we want our loved ones to know. (It is very popular.)

However, Dr. Eric Cassell makes the point that legal documents are no substitute for frank discussions of these issues about “things that matter” with our physician. He feels that doctors “have an absolute and unremitting responsibility to understand their patient’s aims.” (Cassell, p.242) 

Physicians, Dr. Glorioso reminds us (we’ve heard this before) need to always “focus on the person, not the disease.” This is especially necessary where there is a mortal illness.

A man and his dog

Outside of medicine? And in addition to his intense Ph.D. studies? Besides being an avid reader and being in a book club, Dominic likes to eat and is, he admitted, a “pretty good cook” (Italian dishes are preferred, but there is some French, too). He and his wife adopted an Australian Shepherd with a double blue merle gene. The handicapped dog is completely deaf and has vision defects. Training such a pet has been tricky, but a rein around the snout to quickly redirect her has allowed Dom to proudly walk her with a loose leash. 

Dominic worries whether “we are ever going to improve healthcare in this country.” He feels that “we have a lot of technology but (we are) not doing a good job about how we use it.” And the cost for society is enormous. 

Changing our ideas about old age and death and dying by truly understanding and paying attention to "what matters in the end," as Dr. Atul Gwande has written, would be a good start.  

Where we experience death is a factor in how we experience death. Most people want to die at home, said Dominic. But, according to 2017 CDC data about 30% of deaths in the US occur in the hospital (down from 40% in 2003), 30% in the home, about 22% in a nursing facility, 8% in a hospice facility, and about 10% elsewhere. 

Yet, as Gina Kolata notes in the New York Times, deaths at home, even with home-hospice assistance, may still be characterized by unnecessary suffering, both by the dying patient and the over-burdened caregivers. Dr. Glorioso said that he finds that, even with hospice, pain relief is often inadequate. 

We can do better as we compose the final words and fill in the empty spaces of our life story.   

The surgeon-author Dr. Sherwin B. Nuland (1931-2014) has written:

We have been given the miracle of life because trillions and trillions of living things have prepared the way for us and then have died--in a sense, for us. We die, in turn, so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life (Nuland, p. 267).

References and Recommended Readings:

1. Cassell, Eric J. The Nature of Suffering: And the Goals of Medicine. Oxford University Press. New York, 1991. (There is always something to be done to ease suffering.)

2. Frankl, Victor E. Man's Search for Meaning. Beacon Press. Boston, 2014. (There is meaning even in suffering, but not needless suffering.)

3. Gawande, Atul. Being Mortal: Medicine and What Matters in the End. Henry Holt and Company. New York, 2014. (We can design something better.)

4. Kolata, Gina. New York Times. December 26, 2019.

5. Neumann, Ann. The Good Death: An Exploration of Dying in America. Beacon Press. Boston, 2016. (An impassioned plea for improvement.)

6. Nuland, Sherwin B. How We Die; Reflections on Life's Final Chapter. Alfred A. Knopf. New York, 1994. (A classic.)

7. Warraich, Haider. "The way we die will be considered unthinkable 50 years from now: how we treat dying people needs to change." Vox. April 3, 2019. (online)

A quiet late winter morning (SC)

by Anita Cherry 2/26/21