Dr. Dominic Glorioso |
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) |
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) |
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.
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) |
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. |
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 |
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 |
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).
6. Nuland, Sherwin B. How We Die; Reflections on Life's Final Chapter. Alfred A. Knopf. New York, 1994. (A classic.)
A quiet late winter morning (SC) |
by Anita Cherry 2/26/21
1 comment:
Very well told story.
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