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

Dr. George Robinson: To Sleep, Perchance to...Stop Breathing?

Dr. Robinson

The idea of a life in medicine was always sitting quietly in the back of his mind. But as a self-described “nerd” who nevertheless went to West Virginia University on a sports scholarship as an already-injured right-handed first-baseman, George studied accounting (with a minor in chemistry). After graduation, he joined the international accounting firm of Peat, Marwick, and Mitchell where he did auditing and tax work.

Sure, he had plenty of fun outside of the office and made lots of friends. But he said the work itself was just “shifting numbers and balancing books." This was not “terribly exciting” and wasn’t “fulfilling.” Though he admitted that it  “sounds too altruistic,” he really wanted “to make the world better.” 

So he changed direction. After six years of debit and credit, George Robinson, the future pulmonologist, critical care physician, and sleep doctor, went to medical school. He viewed the practice of medicine as his chance to have a positive impact. 

But why, perhaps, did he start with accounting? His father was a manager in a large food business and “ran plants that made stuff,” said George. Because of that, he moved the family around. His parents were living in Ohio when George came along. From Bay Village outside of Cleveland, they moved to Akron, then to Port Huron, Michigan, then to New Jersey, and, eventually to Maryland. 

George’s father, an Ohio State graduate,  wanted his two sons to go to college to be able to work for themselves, not for “the man.” You could do that as a CPA (though George didn’t) and (at least back then) you could do it as a physician. 

George’s mother, a registered dietician, also an Ohio Stater, agreed about college but gave her elder son a slightly different message. A message she carefully pinned to the back of his coat. It read: “Please Don’t Feed My Child!”  

These days, Dr. Robinson shares attending duty in the Covid-ICUs, defined areas within the York Hospital filled with patients struggling to breathe, struggling to survive. 

Sitting in my living room with his wife Diane, and more than six feet from each other, our facial coverings betray the seriousness of the moment. And as we talk, the subtle puffing out and then retracting of George’s mask with each breath suddenly reminds me of those old-fashioned ventilators with accordion bellows I’ve seen on TV. Filling up, and then deflating. Filling up, and then deflating...over and over.

(Some people, it seems, still don’t see that this viral pandemic is a nightmare. Even with December’s jump in the number of new infections daily and the deaths, so far, in early January 2021, more than 360,00 Americans. Deaths often occurring in the strained and lonely Covid wards. Deaths as weary and disheartened doctors and dedicated and overworked nurses practice the best cutting edge medicine available for this new and unpredictable disease. I don’t know what it’s going to take...) 

I asked Dr. Robinson how he was managing “on the front lines.” He quickly replied that “this is what we signed up for.” He likened it to the mid-1980s, early in the frightening AIDS pandemic, when everyone was to practice “universal precautions” to avoid any possible contact with the virus. The fine details of the transmission of the HIV virus were not fully known in the beginning and since there was no treatment there was mortal fear of contagion. 

Diane, a medical librarian, reminded us that patience is needed since understanding a new disease like HIV or Covid-19 takes time and there may be early missteps. (A much younger Dr. Anthony Fauci was already carefully leading the way at the NIH in the ‘80s.) 

To continue the military theme: George enjoys reading American history and he tells his residents on the Covid Service a story about General Eisenhower and the D-Day invasion. About the decision to order young and naive 18- and 19-year-old soldiers to land at the dangerous Utah and Omaha Beaches, a risky task that older soldiers, the “seasoned professionals,” would know to avoid. 

Soldier receiving medical treatment following the 
June 6, 1944, D-Day Invasion (from History.com)

So Dr. Robinson lets his young charges venture in to see the patients first and to report back to him, the wise seasoned professional. The residents (of which, quipped George, there is a “large supply, but only eleven of us” ) usually laugh. They usually laugh. 

But, in fact, he is careful, and said that he “feels safer in the Covid unit than most any other place in the hospital.”  (And by the way, Dr. Robinson made sure to tell me later that he really loves the residents and that teaching them is a joy.)

At this point, I gaze at his tan starched-looking fabric mask again, looking for the creases, the laugh lines, at the corners of his eyes that tell of a smile.  But with our faces half-covered, it’s much harder to read people now, increasing our “distance” from one another beyond the recommended six feet.

As I started writing this story more than a month after our interview, trying to get to know who Dr. Robinson was, I wanted to tell him that things were underway. So I casually sent him a text. He quickly texted back to tell me that his story had changed; he had contracted Covid-19! My heart sank. I anxiously called him. As he answered I could hear his breathing. He said calmly, with that matter-of-fact doctor voice I’ve come to know from my husband, that he had a cough and was fatigued. 

But he was upbeat (that’s George, I guess), and said that he was taking care of patients remotely. No need for time off for the general, for the seasoned warrior. Diane, I learned, was sick, too, with the same symptoms. (Ironically, the first vaccines for Covid-19 would become available in just a few weeks.)    

The Covid-19 ICU is a new twist in critical or intensive care medicine. It is claimed that the world’s first intensive care unit was set up in Copenhagen in 1953, one year after the polio pandemic that hit that city especially hard. There was one, just one, iron lung in the entire city, and adults and children were dying daily of respiratory failure. Dr. Bjørn Ibsen decided to use positive pressure ventilation, instead of the negative pressure of the bulky iron tank, for a young girl seemingly about to die. In six-hour shifts, medical students took turns squeezing the rubber bag attached to her tracheostomy. Twelve-year-old Viv Ebert survived. A new idea was born. 

Tending to Dr. Ibsen's patients (from nature.com)

What about intensive care in the US? A sort-of ICU was created in 1954 at Chestnut Hill Hospital outside of Philadelphia to allow short-staffed nurses to closely watch over a group of their sicker patients. But Dr. Peter Safar in Pittsburgh is given credit for developing the first real ICU in the States in 1958. The first critical care residency was established in 1963, also in Pittsburgh; the first board exam in the new specialty was offered in 1987.

These days, Dr. Robinson, in his role as an experienced pulmonary/critical care practitioner, needs to figure out what to do for his patients with Covid-19 who have trouble breathing. Some need only supportive care without supplemental oxygen, some need low-flow nasal oxygen, some need high-flow nasal oxygen with assisted ventilation, and some need a mechanical ventilator. Some patients, we learned, are periodically flipped from being on their backs to their belly, from supine to prone, to aerate different parts of their lungs (an old technique that is easier on the nurses now, said George since all of the rooms are fitted with cranes).

(An interesting historical tidbit, recounted in a story recently by newspaperman Gordon Freireich: The first-ever report of the use of supplemental oxygen for a patient with pneumonia to be published in a professional journal appeared in 1885. An astute 23-year-old doctor, only a few years out of medical school, wanted to make other “country practitioners” aware of the treatment. The patient, 16-year-old Frederick Gable, survived. The physician, Dr. George Holtzapple, of Loganville, was a staff member at the York Hospital.)   

Painting of Dr. Holtzapple delivering oxygen to Frederick
on March 6, 1885, and a plaque marking the event
(from the "York Daily Record")

In addition to the life-threatening respiratory problems, Covid patients may develop acute cardiac complications, kidney failure, liver damage, blood clotting abnormalities, and neurologic impairment with agitation, delirium, or strokes. Teamwork is required to support the patient until the body heals itself, and Dr. Robinson guides his squad steadily (and, when needed, especially now, with a dose of wry humor).  

(Another image popped into my head. As we were first learning about the spread of the novel coronavirus we were shown how showers of tiny droplets were sprayed into the air as we coughed or talked without a face covering. This reminded me of the Jewish folktale about the danger of malicious gossip: It is as impossible to repair the damage done by harsh words or outright lies as it is to put the feathers back in a pillow once they have been released and scattered to the wind. So the virus, once dispersed, cannot be recalled, cannot be gathered up and stuffed back into the "pillow.") 

Spread of aerosols and droplets on coughing or exhaling
(from ScienceDirect)

But let’s take a break from Covid and go back to tracing George’s career path. After his bleary accounting days, admitted fiscal conservative that he is, he looked around for an affordable (very affordable) medical school and decided to apply to the West Virginia program. It was a good choice. 

  Dr. Ferimer

You see, it was there that he met Diane. She was on the faculty as one of the librarians. Though it wasn’t kosher for faculty members to date students, George's cadaver-mate, Howard Ferimer (now a pediatric critical care physician in Pittsburgh), chose to play matchmaker anyway. It took some, but not much, maneuvering and they were “sort of together” said Diane, through medical school.

As George did rotations he carefully considered the different specialties. He thought about orthopedics, but he discovered one day in the OR that he was allergic to the cement used to anchor the prosthetic parts. He thought about cardiology, but he didn’t want to “stand around all day doing caths.” He thought about ophthalmology (like his uncle) but the “Number one or number two?” stuff turned him off. He even thought about neurology. 

His decision was finally influenced by infectious disease specialist Dr. Robert D'Alessandri at WVU who, besides being an expert clinician, showed the student that “attendings actually had a sense of humor.” So George realized that he enjoyed internal medicine, and since he wanted “to do things,” he was drawn to the brand new field of critical care. 

The University of West Virginia Medical School (from UWV)

When Dr. Robinson graduated from medical school in 1987 at the age of 32 to start an internal medicine residency he wanted to move closer to his parents in Severna Park. He looked at programs at Hopkins and the University of Maryland but wasn’t happy with either one. One night in the WVU ER someone told George of a doctor who “had a great time” at the York Hospital (it was Dr. Chris Due). He decided to take a look, and Dr. Robinson told me that “the rest is history.”

Dr. Zwillich

So, George moved to Pennsylvania and brought Diane along later; while she worked in the hospital library, he did his residency and a year as Chief Resident.  After the enjoyable four years at York, he did a three-year pulmonary and critical care fellowship at Penn State Hershey. Dr. Clifford Zwillich ran the program where they saw many patients with sleep-disordered breathing problems. Dr. Robinson said that it was while he was there he “found out” he “liked sleep medicine more than anything else.” 

In fact, his personal goal, his vision, over the past 25 years in York has been to build a strong sleep program for Central Pennsylvania. He’s been inching towards that, despite a few temporary administrative setbacks.  Even as he (as someone who knows about accounting) carefully explained to those who made such business decisions how just a few more sleep-lab beds would provide them with a nice “return on investment.”

So, as we sat together we spent a lot of time talking about George’s real passion, sleep. And why we often don’t get enough. And what happens next. 

All life, it turns out, has a built-in roughly 24-hour metabolic cycle, a circadian (“about a day”) rhythm. This clock keeps us synchronized, in tune, with nature and with each other. Failing to abide by the schedule causes problems. Dr. Robinson said, for example, that disrupting this rhythm in the spring for only one hour as we switch to Daylight Saving Time and get an hour less sleep results in more car accidents, more heart attacks, more strokes, and more medical errors over the next week as we adjust. We should probably stick to Standard time, he noted. 

NEJM: Canadian study of auto accidents 
after time changes (from Vox.com)

The shifting of the cycle, whether we wake up ready to go, like young grade-schoolers, or tend to stay up late and sleep late, like most teens, for example, should be considered as school start-times are set. 

Light, sunlight, especially blue light, is the strongest natural modifier of the cycle that slowly adjusts as the length of the daylight varies through the year. Exposure to light early in the day encourages wakefulness and energy. And the gradual dimming of light toward evening is the signal for us to stop and rest, and to sleep (and to dream). 

Speaking of dreaming, narrative dreams, where there is a story, occur in the REM, or rapid eye movement, stage of sleep. This is the time when the brain waves recorded on the EEG look like waking but most of the body is essentially paralyzed, preventing us from moving. 

This stage of sleep was first identified by Eugene Aserinsky (1921-1998) in 1953 while working with the founder of sleep medicine, Dr.  Nathaniel Kleitman (1895-1999), his thesis advisor. Gene performed the first all-night recording of ocular movements and EEG activity (now standard in sleep labs). This showed that sleep was an active state, not passive, as had been assumed. (The subject of the historic recording was Aserinsky’s eight-year-old son and the paper tracing was nearly a mile long!)

EEG patterns of waking and stages of sleep: 
compare waking with REM sleep.
(from Semantic Scholar)

But how does sleep itself come about? Melatonin, the sleep hormone, produced in the pineal gland deep in the brain, is geared to be released toward evening, preparing us for restful and peaceful slumber. Seems fine. But bright light late in the day, thanks to Thomas Edison and his bulb, messes things up. 

So we stay up late doing things, watching TV, or simply gazing mindlessly at our phones. And when we need to wake up early for work or for school we haven’t gotten the required seven to eight hours of sleep (needed for adults). We are tired. We yawn. We lose focus. We are irritable. We make mistakes. We should have turned down the lights earlier, but we just have too much to do. 

Sometimes, even though we go to bed early enough, fall asleep quickly, and spend eight hours apparently asleep (and our phones assure us that we slept) we are still sleep-deprived. We have a sleep debt and we are tired during the day, not fully awake. The most common cause of this, said Dr. Robinson, is the serious and increasingly recognized problem of obstructive sleep apnea (or OSA). This makes up the bulk of his sleep practice. 

What causes OSA, I asked? Here goes. Muscle tone decreases as one falls into light sleep. If the upper airway is already narrowed by enlarged tonsils, fat deposits, a large tongue, or other anatomical features, including the general (sadly) sagging of tissues with age, the partial collapse of the sidewalls of the throat that occurs during light sleep can block the flow of air. 

Partial blockage produces snoring. When complete blockage occurs breathing stops, snoring stops, and the blood oxygen level gradually falls. As a result, the brain, though busy with its sleep stuff, arouses itself to correct the problem. And the sudden reopening of the airway by expelled air is often accompanied by a loud snorting noise (often awakening the sleep partner). This cycle repeats through the night, maybe hundreds of times. Deep restorative sleep doesn’t happen. Chronic daytime tiredness results as sleep debt increases and sudden brief sleeps without warning may occur.

Where obstruction typically occurs

Yet simple tiredness, said George, is not all that happens. Not by far. Individuals with OSA have an increased risk of developing high blood pressure, diabetes, obesity, heart disease with dangerous rhythm disturbances, heart attacks or heart failure, cognitive impairment, and strokes.

It is estimated that more than 70% of individuals with OSA are obese. So, as obesity (especially central obesity) is the major cause of the pandemic of diabetes it also fuels the pandemic of sleep apnea. A vicious cycle.  

Obstructive sleep apnea said George, also greatly increases the chance of complications of surgery and anesthesia and he and his colleagues have started a program to screen patients for OSA before surgery. And since it may negatively affect the unborn fetus as oxygen levels fall in the second trimester of pregnancy he wants to identify women at risk before that happens. 

In addition, Dr. Robinson hopes to work closely with the trucking industry since falling asleep at the wheel is costly (trucks are expensive, he noted) and nearly 30% of truckers may have sleep apnea.

How is OSA treated? When it was first identified in 1965 (in Germany) it was treated with a tracheostomy to bypass the obstruction. The continuous positive airway pressure or nasal CPAP device to hold, or to stent, the upper airway, to keep it open, was devised in 1981 by Australian Colin Sullivan, said Dr. Robinson. CPAP is still the most effective treatment...but only if people use it regularly. Fitting the right mask for a patient is an imperfect art, and George believes it will be easier with new custom-made designs. Weight loss is also important if the patient is overweight and it may become easier to lose pounds as sleep improves; a virtuous cycle.

Dr. Robinson also sees individuals with other sleep issues, too. For example, he sees those with REM-sleep behavioral disorder. In this, the normal inhibition of voluntary muscle activity during REM doesn’t occur; people act out their dreams and may become violent. Fortunately, it responds well to medication. Curiously, it is sometimes a very early symptom of Parkinson’s disease. He sees other so-called parasomnias such as sleep-walking or night terrors, and there are circadian rhythm disorders. 

Narcolepsy was the first recognized sleep disorder. It is uncommon, but dramatic, with abrupt sleep attacks, sudden collapses or near-collapses due to loss of muscle tone, vivid waking dreams, and frightening episodes of momentary immobility upon awakening. The orderly sleep system, so-called sleep architecture, is disrupted as REM-sleep and waking occur at the same time. (II guess that is sort of like when I feel half-asleep.) 

Narcolepsy is probably an autoimmune disease due to damage to a small group of cells at the base of the brain that releases the wakefulness hormone hypocretin/orexin. Stimulants help the sleepiness and antidepressants can alleviate the embarrassing collapses, the cataplexy. 

Hypocretin modulates alertness through
dopamine, serotonin, histamine, etc. 
(from ResearchGate.net) 

Restless legs syndrome (RLS), a surprisingly common condition, was first described in 1685 but was“overlooked” until 1945 when Swedish neurologist Karl Ekbom wrote about it. RLS interferes with falling asleep (the legs are oddly uncomfortable and there is the urge to move them) and staying asleep (due to involuntary kicking of legs). It has genetic features and evidence of brain pathology regarding dopamine and can be mostly alleviated with medicines. Some sufferers have an iron deficiency.

I asked him about insomnia. He implied that he leaves that thorny problem and the emotional aspects of perceived sleeplessness and true insomnia mostly to the mental health team. He said, however, that cognitive-behavioral therapy (CBTi) is often useful. He was doubtful about CBD: “Show me the data,” he said. 

So, Dr. Robinson, as a pulmonary physician, noted that chronic lung disease or COPD is difficult to treat since it doesn’t improve over time. Sleep disorders, on the other hand, generally respond well to therapy. He said that he likes to help people get better and that his sleep work is very rewarding.

And as we were wrapping things up and George was talking about his outside interests, including travel with friends, Diane mentioned their special trip to Cuba.  She recalled the exquisite taste of the fish, freshly caught from the sea and then simply grilled and immediately brought to their table. For a moment they both seemed to be somewhere else; they were suddenly more relaxed, more at ease. George stretched out his long legs and Diane’s arms waved about as she spoke. I could see the smile creases at the corners of their eyes. It was an unexpected blissful remembrance of a before-Covid experience. 

George cruising in Havana, Cuba

I watched and listened. And waited for them to return to our new reality, yet looking forward to life after-Covid, when the Covid ICUs will be dark and empty and a dedicated sleep center will be up and running. When we will be able to sleep soundly again and drift into REM sleep and have pleasant dreams.

(George and Diane, you’ll be glad to know, while still easily-fatigued a few weeks after their Covid infection, are improving daily. George is back in the hospital where there are now four ICUs for Covid patients.)

References and recommended readings:

1. Aserinsky, Eugene and Kleitman, Nathaniel. "Regularly occurring periods of eye motility, and concomitant phenomena, during sleep." Science, 1953, 118, 3062, p.273-274. (A turning point in the history of sleep medicine.)

2. Dement, William C., M.D., Ph.D., and Vaughn, Christopher. The Promise of Sleep; A Pioneer in Sleep Medicine Explores the Vital Connection Between Health, Happiness, and a Good Night's Sleep. Delacorte Press, Random House. New York, 1999. (Somewhat dated, but worth reading.)

3. Freireich, Gordon. "York and the history of oxygen in medicine." York Daily Record, February 2, 2020. (Clarifying the story.)

4. Hamblin, James. The Mysterious Link Between Covid-19 and sleep. The Atlantic. December 21, 2020. (He says that "The coronavirus can cause insomnia and long-term changes in our nervous systems," and speculates that "sleep could also be a key to ending the pandemic.")

5. Jung R, Kuhlo W. Neurophysiological Studies of Abnormal Night Sleep and the Pickwickian Syndrome. Prog Brain Res. 1965;18:140–59. (First description of obstructive sleep apnea.)

6. Leschziner, Guy. The Nocturnal Brain: Nightmares, Neuroscience, and the Secret World of Sleep. St. Martin's Press. New York, 2019. (An enjoyable up-to-date read.)

Canada geese flying across the
York Heritage Rail-Trail (SC)

By Anita Cherry 1/3/21

Dr. Andre Lijoi: A Modern Knight Errant on a Mission

Andre Lijoi, M.D.

“It was a beautiful thing,” he said. The Italian immigrants in the small tightly-knit neighborhood just twenty miles outside of New York City “wanted all of their children to succeed.” It was an “unspoken communal responsibility” and “they kept an eye on you.” They made sure that no one got into trouble. Dr. Andre Lijoi, one of those children, told me that he felt cared about (and I assume that he and his three siblings didn't get into any real trouble).  

His grandfather, Bruno Lijoi (1891-1984), left the town of Sant’Andrea Apostolo dello Ionio, located “at the instep of the boot,“ for his first trip to the Americas in 1913. He went back and forth across the ocean several times as he worked as a coal miner in Virginia, a gaucho in Argentina, and a laborer in Ohio.  His wife Angela (1895-2003!) stayed in Italy, longed for his periodic returns, and bore and raised their four children. 

Though he had only a third grade education, Dr. Lijoi’s grandfather “was a wise man” who abandoned Italy for good in 1935 as he saw the rise of Mussolini's fascism and sought to avoid his son being conscripted into the army. Andre’s father was 15 when the family arrived in the States and he served briefly in Roosevelt’s military (until he hurt his hip).

Grandparents Bruno and Angela Lijoi

Dr. Lijoi’s mother’s family came here in 1928 from Alvito, a small mountain town in central Italy between Naples and Rome; she was only eight. After Ellis Island, her family first settled in the Corona neighborhood of Queens (Ironically, an area that was struck hard by the novel coronavirus earlier this year.)

Both families ended up in the village of Suffern in Rockland County and everyone needed to learn English. Monsignor Robert Ford (1918-2016), a wonderful Irish priest, helped Andre’s father with the new language and helped him get a GED. As his father, Salvatore, worked as a barber (from age 12 in Italy to 32 here), eight-year-old Andre sometimes shined shoes for a quarter. Sal attended Fordham at night and studied education. He first became a teacher, then a guidance counselor, and, finally, a principal of two schools (at the same time!). Andre’s mother studied, too, and used her own teaching degree and a Master's in library science to work as a children’s librarian.  

Andre's family in New York

With this strong belief in the value of education, this example, Andre attended Ramapo College of New Jersey, the state’s public liberal arts school located about two miles away from Suffern, just across the state line. He majored in biology, but took “some sort of” liberal arts or humanities course every semester, he said, including an influential Medicine and Literature seminar, a foretelling of the future. 

He considered doing “bench work” (that is, basic science) but was drawn to clinical medicine (both an art and a science) as he worked as a clerk in the local public library. He discovered there that he had a penchant, a knack, for listening to the patrons as he helped them find what they were looking for and voiced concerns about their health and the care they received. 

So he changed plans and went to the Georgetown School of Medicine, “heir to the Jesuit traditions of care of the sick and commitment to service and social justice” (from the Georgetown website).

He said that the first day at Georgetown the classmate in line standing right behind him as they were “picking up something” was Jamie Ferrara. Jamie had just come back from Oxford where he studied philosophy and literature. He had befriended Father Timothy S. Healy (1923-1992), who was studying Shakespeare there with one of the world’s experts. Fr. Healy, it just so happens, was president of Georgetown University. When Jamie asked Andre if he wanted to join a poetry group he was forming for medical students Andre did not hesitate; he said yes.

Father Timothy Healy chatting with MotherTheresa
(from Georgetown.edu)

So, “once a week for four years” Andre and the others, he said, met with Fr. Healy over dinner or breakfast; a much-needed break from their medical studies. The group read all of Shakespeare, and they made their way through Yeats and Eliot.  He told me that while he didn’t quite “get” the poetry at the time, he somehow “liked it.” Shakespeare? Well, it’s, you know, Shakespeare.   

After finishing medical school in 1980 Andre did a Family Practice residency at the University of Maryland where there wasn’t much time for literature. After this, in 1983, he went to the Appalachian region of Kentucky, in Hyden, to work for the Public Health Service. He soon found out that “when you ask a question, you get a story.” He was, as he said, “immersed in a narrative culture.”  

Commenting on that rich tradition, Kentucky novelist Silas House has written: “The thing, always, is the story. The beauty is in the testimony itself, even when there is ugliness mixed in, too. In these mountains, we know what it’s like for the eyesore and the magnificent to coexist. The true beauty is in that complexity.”

Transporting of coal (from Roger May)

So, the visits with his struggling, impoverished, but always proud patients were longer, but the days went by faster. After six months of listening, the young idealistic doctor understood that the story-telling was “really helpful.” Both for the doctor and the patient.

(A personal aside: I have sometimes imagined that it would be nice if we could press a specially-inked paper to our bodies like a second skin and that when it is slowly peeled off it would reveal an image, sort of like a Rorschach, of what’s going on inside. It could then be gently handed to the doctor. She would see where things are not right, where we are hurting, where we need fixing; I would not need to tell her.) 

Rorschach card #2 (from erzebet-s)

Anyway, after the enlightening period in Kentucky Dr. Lijoi moved to Hanover and enjoyed a busy private practice for seven years. His wife, Laurie, practiced with him for a while, but then left medicine to raise their two children, Katherine and Peter. 

Andre joined the WellSpan Family Medicine faculty in 1995, where he has remained. He worked closely with his colleagues and learned a good deal from Drs. Bruce Bushwick and Richard Sloan as they encouraged him in his nascent role as a teacher. 

And as Dr. Lijoi showed medical students and residents how to take care of their patients, and how to care for their patients, he found that the process of getting the story, of writing the story, and of telling and then re-telling the story, could be a powerful tool. 

This task begins with engaged listening and meticulous observation, skills worthy of Osler (as in, “Listen to the patient…”). It also requires the ability to record, to make known to others, to share, and to objectivize the findings. It requires a commitment from the doctor to get it right. And it cannot be rushed.

Surely, discovering the (sometimes) hidden narrative, how things got to be the way they are, is needed in acute conditions, where the tale is short and the effort is focused. But it is more vitally important in patients with chronic illness and loss of function, making up the bulk of medical practice now. Here, the process can span decades, and the whole being of the person and their social supports are relevant to the unfolding story.

Dr. Rita Charon

So, being accustomed to attentive listening, and thinking about such things, Dr. Lijoi’s ears were tuned to the right frequency when he heard about Dr. Rita Charon’s innovative program of “Narrative Medicine” at Columbia. 

Dr. Charon, a general internist trained in Medicine at Harvard and, later, in English (with a Ph.D. from Columbia) noted that “along with scientific ability, physicians need the ability to listen to the narratives of the patient” to grasp their meanings. (Charon 2001 p. 1897).  

Here is where we begin to get a bit technical, so bear with me. Dr. Charon emphasized the critical difference between generalizable scientific or logical knowledge and the “particularized” or singular narrative way of knowing that is set in time and space. Narrative, she notes, is concerned with the “motivations and the consequences of human actions” (Charon 1993, p. 149). She believes that skill in acquiring this type of knowledge of individuals can be fostered through critical and “close reading of literature and reflective writing.” 

And that “through narrative knowledge, humans come to recognize themselves and each other, telling stories in order to know who they are, where they are from, and where they are going,” (Charon 1993, p. 149). 

But how does listening to or reading a story actually work as we try to understand each other? How does it bind the teller and the listener together in a communal act? This is where I needed to turn to my husband, the neurologist.  

The primate brain, you see, contains a set of so-called mirror neurons, first identified by Italian neurophysiologist Giacomo Rizzolatti in 1992 in monkeys. Some fire, or are activated, during specific actions (of course) but also when we are observing another individual perform the same motor activity. Other neurons fire when slightly different actions are observed, but would nevertheless achieve the same goal. This mirroring also happens as we share memories or express emotions. 

When you tell me something that affects you deeply the areas of your brain and my brain that light up during a functional MRI scan are essentially the same. I, in a sense, experience your subjective experience. This mimicry results in learning and is critical for language and social and cooperative activities. And, listen to this... the process is completely involuntary, it’s how we are wired (together).  

Nearly the same cortical areas are activated during
  the execution of a movement and simply observing it. 
(from Semantic Scholar)

So, anyway, Dr. Lijoi decided to formally study narrative medicine in depth and he trained with Dr. Charon at Columbia. He loved the work and the warm camaraderie. He received formal certification in 2019.   

Andre has brought this back to the students, residents, current and retired medical staff, clergy, and interested nurses at the York Hospital. He runs didactic sessions with the residents and monthly hour-long get-togethers with the others. At each session, he is joined by a practice partner, a novelist, and a poet. Everyone is encouraged to share their reactions to a short work of fiction, a poem, or, perhaps, to a work of visual art. And they have to write something meaningful to themselves. He believes strongly in this and hopes that the work is valued and will be continued by someone else after he retires (he’s not ready to, quite yet).  

He used Eric Carle’s children's book about creative expression and imagination, “The Artist who Painted a Blue Horse” and Mary Oliver’s tribute to the artist, “Franz Marc’s Blue Horses,”  for his first original presentation to the residents. He wanted them to see that when you are the artist you get to pick the colors and that when you are the doctor “you must try to know best where to place your brush” on the canvas of the life of the patient. You can even paint outside the lines. He said that he always wears blue and pink when he presents (only then did I take notice of his pink polo shirt and blue patterned socks).

Franz Marc's "Die groẞen blauen Pferde" (1911)

He is partial to Mary Oliver’s poetry and the work of physician-writers such as William Carlos Williams and Anton Chekov and often uses these authors in his talks.

Dr. Lijoi is not shy when sharing his passion.  He wants his trainees to feel the same way he does about the “beautiful profession” that he so loves. Though Don Quixote’s lovingly-imagined lady Dulcinea del Toboso is in real life a poor peasant girl, as his squire and confidante Sancho Panza repeatedly reminds him, he doesn’t abandon the poetic dream of her unmatched beauty. And he doesn’t give up his knightly task of righting wrongs and doing justice. Dr. Andre Lijoi wants his students to remain similarly idealistic when it comes to their patients and their own stories.

Adam Driver and Jonathan Pryce in
"The Man Who Killed Don Quixote"
Directed by Terry Gilliam (2018)

Andre has given of his time and he has been given back. He told me that when he learned that when he had received the Pennsylvania Family Medicine Doctor of the Year award in 2008 he reflected on why he went into medicine, and on all of those who influenced him. He felt deeply touched by the patients and colleagues who wrote in support of his nomination.  

Dr. Lijoi was most grateful, he said, for his first and most important teachers, his parents. As immigrants, they wanted the American dream for their children more so than for themselves. They emphasized and demonstrated Christian virtues and the benefits of serving others. He recalled and acknowledged his many formative influences from high school, college, medical school, residency, and practice. He gave thanks to God.  

In his free time, Andre enjoys hiking with his wife (and even his grown kids), especially in National Parks, and he likes fly-fishing. He is deeply involved in his church and its several ministries and is a lector, a reader there.

Peter. Laurie, Andre, and Katherine

And he “loves” (and finally “gets”) poetry: reading between the lines, hearing what is unspoken, listening to the silence between the first and second heart sounds, between the “lub” and the “dub,” as the heart fills and then empties itself.

So as we try to share our experience of illness, of non-well-being, with our doctors, our words, conveyed through our breath, are all-important. And the accuracy and honesty of our telling, our confiding, our confessing, opens the way to healing. And the narration and reading and re-telling of the story over time is part of the process as we grow. A simple bullet list of our ICD-10 diagnoses won’t do; taking away my story, a story that has become part of me, is not acceptable. 

And as we live through Covid-19 times and adapt, and as we write our own stories, we need to look after one another. We have to ensure that everyone has the opportunity to succeed and that nobody gets into trouble.

 

Andre fishing at Maroon Bells

From “Sometimes” by Mary Oliver 

Instructions for living a life: 

Pay attention.

Be astonished.

Tell about it.

 

References:

Charon, Rita. The Narrative Road to Empathy in Empathy and the Practice of Medicine, Spiro, Howard et. al. Yale University Press. New Haven and London 1993.

Charon, Rita M.D., Ph.D. "Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust." JAMA 2001; 286, 1897-1902.

House, Silas in "A Love Letter to Appalachia" by Roger May (https://bittersoutherner.com/roger-may-love-letter-to-appalachia).

Iacoboni, Marco. "Imitation, Empathy, and Mirror Neurons" Annu. Rev. Psychol. 2009.60:653-670.  

I call these "My Buddymundas" (whatever that means)
(My morning friends, I guess...)

By Anita Cherry (11/28/20)