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As a family physician, one of the more fun conditions for me to care for is pregnancy, childbirth, and the well child checkups that follow.
I meet women at the start of their pregnancies and learn a little about their lives beyond their pregnant “condition.” I see them every month for a long stretch, meeting mothers, mothers-in-law, friends, and husbands along the way. As things progress I see them every two weeks, and then weekly.
By the time the weekly visits occur I find out what my patients are made of – and they get to know me, as well. Mama is very pregnant, and my job is to convince her that every day inside, even past the mythical due date, is good for the baby. I then get to witness the miracle of childbirth (and occasionally play a larger role).
In my practice, mother and baby come back to visit weekly, monthly, and then annually as the children reach toddlerhood. We continue to have conversations around the new family and the transitions up until the age of three. After that, if the child is well, we are limited to an annual “Hi, how are you doing?” For the most part, they are moving on with their lives as a young family and fortunately do not need my help. In the words of the Lone Ranger,”My work here is done.”
However, it isn’t quite as easy as that. Doctoring is a funny gig when it comes to personal relationships. I’m sure there are others just as funny, dentistry probably being one. I see these folks back for a visit after a couple of years, or at a community activity, or elsewhere in Mobile and surrounds, and the mothers will proudly say to their (very embarrassed) twelve-year-old, “There’s the first person who ever saw you.” We’ll make some small talk — what do you say to a twelve year old after nine years? — and typically the mother will ask about my family and my kids.
Because, as it turns out, while they were sharing a part of their story with me, I was sharing a little of my story with them. I used my children as examples for feeding and discipline problem-solving, as both good and bad examples. I discussed my wife’s meal-time solutions for feeding grown-ups and kids at the same table. In other words, I shared with them as they were sharing with me. A little piece of my version of how we put our kids to bed has entered into the bedtime strategy of many of the families that I have cared for. If “Good Night Moon” did become a successful part of their ritual, I hope they think of Dr. Perkins in a really good way (after the toddler is actually asleep, of course).
I don’t get to care for a lot of young families any more, given my other duties, but I do still see folks that I have cared for over the last twenty years, people with whom I have shared family anecdotes in this manner in the hope of leading them to better health.
It has been six months since my wife’s death. Many of my patients, coming in for a variety of reasons, or running into me around Mobile, have wanted me to know that they are here for me just as I, and our family, and some of my
wife’s child-rearing strategies, were there for them. It has meant a great deal to me.
Through pestilence, hurricanes, and conflagrations the people continued to sing. They sang through the long oppressive years of conquering the swampland and fortifying the town against the ever threatening Mississippi. They are singing today. An irrepressible joie de vivre maintains the unbroken thread of music through the air. Yet, on occasion, if you ask an overburdened citizen why he is singing so gaily, he will give the time-honored reason, “Why to keep from crying, of course!
It is a month today since Danielle’s death. I had already planned to go to New Orleans for my 30th medical school reunion by myself prior to her death, as she was to be playing Amanda this weekend in a local production of Glass Menagerie. The play is set in St Louis. Tennessee Williams, the writer of the play, once said “America has only three cities: New York, San Francisco, and New Orleans. Everywhere else is Cleveland.” Clearly, he set it in St Louis for a reason. Danielle was a New Orleans native, and she understood those reasons.
I lived in the Faubourg Marigny (a neighborhood just outside of the French Quarter) while I was in medical school. After we married, Danielle and I moved to the Irish Channel, a neighborhood that is quite gentrified now but was much less so 34 years ago. For those of you who know New Orleans, we were one block off Magazine and spent many afternoons there walking and window shopping.
After moving to Mobile we found ourselves in New Orleans many times a year. We would go to Danielle’s mother’s house and, after a suitable time, we would make an excuse and go to Magazine Street. The children had valuable grandparent bonding time, and we had New Orleans time. This became less frequent as the children grew older. After Katrina, both of our immediate families left south Louisiana and so our visits were limited to special occasions. We still made it about three or four times a year, however, enjoying many delicious meals with our friends and extended family, and spending time window shopping on Magazine.
This weekend, I played hooky for much of my 30th reunion. Staying with friends of ours in their uptown home, we drank wine and remembered the old times. New Orleans being New Orleans, we went to the Boogaloo Festival and heard the Lost Bayou Ramblers. We spent time among the thirty-somethings, watching them frolic in the old (not very clean looking) Bayou St. John canal. It was hot. All in all, a very New Orleans experience.
At the reunion events I did attend, word quickly spread about my wife’s death. Many came up to me and offered condolences. Most of them only knew Danielle peripherally, so I didn’t have many in-depth conversations. “So sorry for your loss,” they would say. “Thank you for your kind words,” I would mumble back. Since many of these old acquaintances are no longer married to the spouse they boasted in medical school, discussions of marriage and relationships are typically avoided at these reunions altogether. One of the more awkward moments, in fact, was when we toasted to those who helped us get where we are and the person next to me said: “Wait, am I toasting my EX-wives?”
I guess my loss really hit me when I was driving down Magazine Street on my way out of town. I saw all the familiar buildings that were built before we were born and will likely be there after our deaths, and I realized that my loss is not just the Danielle of today. My loss is the life we built together and the life we expected to continue to share. That loss includes our shared experiences and memories. Our stories. Our jokes. I realized that I had lost not only Danielle but our shared New Orleans.
“So sorry for your loss.” For those who knew us, it is a shared loss and I am sorry for your loss as well. For others, I really do appreciate the sentiment, even though I may respond less than enthusiastically at times.
I have a saying I use with my patients who are prone to fret as they grow, and feel, older. “Every day on the green side,” I say to them, “is a good day.” Now that my wife, Danielle, is no longer here to share these days with me, I appreciate very much the effort she put in to making our “green side” as pleasant and inviting as possible.
We recently spent a long weekend mucking out the backyard pond and removing several dozen crawfish so the tadpoles and dragon flies would come back. They are back in force. The blueberry bushes, including the new ones we brought at the Botanical Gardens plant sale, are producing berries and the birds are, with the help of a netting reminder, leaving them on the bush long enough to stay ripe. The chickens continue to lay even after the flock has been reduced to a more manageable three birds. The citrus trees are loaded with fruit. Even the leak in the fountain has slowed, allowing me to keep the water feature flowing and providing the birds with a place to bathe. Here, in Danielle’s urban patch of green, the promise of renewal that spring brings to the gulf coast continues. Danielle is still with us, in her way, here on the green side.
Sudden cardiac death. That, in stark “doctor words,” is how she left those of us still on the green side. Although because of prompt paramedic response she still had a heart rhythm on and off after arriving at the hospital, it soon became clear that, clinically, she had left us on that Sunday, three weeks ago, while still in the house. I like to think that, once called, she decided to stick around. At the very least, she intends to make sure that the crawfish population stays down so she can continue to watch the dragon flies from the kitchen window. I choose to believe that is the case in part because draining that pond was very hard work.
Very few people study sudden cardiac death (SCD) in the general population, mostly because there is little clinical information to be had after the fact. If people make it to the hospital while having their heart attacks, we can mobilize millions of dollars of equipment and personnel to preserve their heart function. When we know that a person is at significant risk for sudden cardiac death, we implant defibrillators which stand at the ready to shock the heart back into compliance should it get out of kilter.
Most SCD happens to relatively healthy people, as it did with Danielle. As documented on the American Heart Association web site, every year about 300,000 people will succumb to SCD. This is about 15% of the deaths that occur in America annually. Of those, about half of the men and two-thirds of the women will have no reason at all to suspect a problem. The modifiable risk factors (hypertension, hypercholesterolemia, diabetes mellitus, kidney dysfunction, obesity, and smoking) have all been brought to the attention of the public. Improvements in management of hypertension and diabetes and reduction of smoking has lead to a reduction in all deaths from heart disease, including SCD. A surprising number of these events occur during exercise (which tends to make the news and provides an excuse for those who embrace the couch potato lifestyle). Jim Fixx perhaps is the most famous victim of sudden cardiac death while exercising. For the most part, habitual exercise is protective. That is, once it becomes a habit.
In Danielle’s case, genetics clearly played a role. However, saying “genetics plays a role” is not the same as saying “it runs in families” like red hair. There is a complex interaction between genes that makes us all unique. Family history doubles the risk of SCD. A rare event becomes half as rare. So far, researchers have identified 23 different gene areas that might play a part. Mathematics suggests that finding a pattern useful for screening or targeted treatment is still many years away.
So, what does this mean for SCD? In the words of the investigators, “Our ability to accurately identify individuals most at risk for SCD within the population remains poor.” Preventing SCD, as of now, is the same as preventing all heart disease. Eat right, exercise regularly, monitor blood pressure and get checked for diabetes if you are one of those at risk. Make exercise a habit and report unusual symptoms such as passing out, chest pain while exercising that improves with rest, or unusual amounts of fatigue. Fund emergency services adequately but realize they are not the answer. Support policy efforts to make exercise more accessible. Bike lanes are one such example. Support policies to reduce exposure to cigarette smoke and access to healthy food. Support research but realize the research will be difficult and expensive to perform.
How about for those of us still on the green side? Support dragon fly habitats. Eschew backyard crawfish breeding. Plant fruit trees. And remember, every day on the green side is a good day.
Two weeks ago today I lost my lovely wife. Coronary atherosclerosis. That is what the death certificate says. My family and I have received an outpouring of love and heartfelt sympathy from our community of twenty-five years. We will never be able to repay their kindness.
Danielle was a craftsperson when it came to her writing. She would work for hours (or days) to express a thought or concept in just the right way. Medical writing was a mystery to her with its passive voice and weasel words. Early in my career I tried to enlist her help with one of my “scholarly” articles. We soon reached an agreement that I would write what I needed and she would pretend to read it once published and say “that’s nice dear.”
This blog was a collaboration and was different. Our attempt was to write it for a layperson with an interest in health care, a passion for doing the right thing, and a desire to connect the dots regarding the flaws in our care delivery system. If we succeeded it was because of her. If we failed, I take the blame. I only hope I can continue and not embarrass myself too much without her contributions.
Danielle was a healthy, fit, active women who unfortunately had a terrible predisposition to cardiac disease and no sensation of cardiac pain. In other words, no “warning signs.” She did not smoke, was not overweight, and ate mostly vegan. Her “coronary atherosclerosis” would have been as much of a surprise to her as it was to the rest of us. Here are my thoughts, at two weeks out:
- Disease occurs randomly. Being adopted, she had limited knowledge of her family history.Had she known that that was a possibility, there are only a couple of things she could have done to change the outcome.This is true for many people who suffer from illness and disability. Victim blaming serves no purpose and is an incorrect response. This we all need to stop.
- That being said, risk factor mitigation only makes good sense. Eat right (a diet low in fats and animal protein, high in fiber, and minimize processed components), exercise daily, avoid cigarette smoke and alcohol in excess. While it didn’t save her life (nor any of us eventually) this type of living likely gave her 10-15 years she would not have had. And gave us that time as well. We all need to try and live in harmony with our bodies. As a community we need to provide these opportunities. Farmers’ markets, community gardens, and bike paths all contribute and should be supported.
- Human connections are very important. What I learned of Danielle after her death was how important her friendship was to many people. I cannot count the number of people who have come up to me to say that at a vulnerable time she reached out and help him or her through the rough patches. As a primary care physician I am brought in at times of crisis. We need people like Danielle who will take an interest and have a serious discussion about concerns with folks who are vulnerable. Things like this prevent crisis. Please reach out to someone who seems distress and ask them what can be done to help them. While churches can serve that purpose, activities involving the arts, informal interactions within the community at open air markets and dog parks, for example, are where such interactions take place. As a community we need to build in these opportunities for casual interaction.
- Illness, random or otherwise, in America is expensive with insurance and cost-prohibitive without it. We are very fortunate that we had health insurance through my employer and enough money to cover incidental costs. Without insurance, the hospital would be able to put a lien on my house if I didn’t have the money. While the ACA is not perfect, it is what we have at this time. President Obama has made it so that, at least in those states that have expanded Medicaid, bankruptcy for medical bills is much less common. Please support the Medicaid expansion.
Enough rationality. For those who know us, I miss her every day in ways both big and small and I know you do as well. For those who did not have the opportunity, hug someone and go back to helping us continue the fight.
Alabama is still poised to unleash the Death Angel. The night after we wrote that post I suffered a tragic loss. Danielle Juzan, my wife and silent collaborator of 33 years was stricken and died of a heart attack at the age of 55. As you can see from the attached article, she was a wonderful, passionate woman who pushed me to stand up and do the right thing regardless of the personal or professional consequences. She was also a marvelous writer and those who have read this blog over the years will never know how much she added to these posts.
She was a fixture in the local community and fought hard for improvements to Mobile, Alabama. Her attachment to our community was what made this work so important. Over the years I have looked at several jobs in places that are better positioned to provide healthcare for all citizens. Each time Danielle would give me the reasons not to leave our house (we just got the garden where it needed to be, we are getting a dog park, etc) and ask me if we couldn’t stay in Mobile a while longer. I would agree that we had a nice life despite the seeming callousness of the public officials and we would go back to tilting at the windmill that is improving the care of the underserved in Alabama.
As I grieve, I continue to check my e-mail and am thankful for the hundreds of expressions of sympathy that I have received. For those of you who read this, thank you so much. While nothing will make it better, it is comforting to know that Danielle has touched so many.
Immediately after her death we were challenged in a message as to accuracy of the position that Medicaid (not the expansion, access to Medicaid at all) saves lives. The commenter suggested that the evidence for improved health was wanting. He pointed out that before the passage of the ACA, Oregon randomly gave several thousand people who were uninsured Medicaid coverage and followed them and several thousand uninsured for a couple of years to see what would happen. The results were as follows:
Medicaid coverage resulted in significantly more outpatient visits, hospitalizations, prescription medications, and emergency department visits. Coverage significantly lowered medical debt, and virtually eliminated the likelihood of having a catastrophic medical expenditure. Medicaid substantially reduced the prevalence of depression, but had no statistically significant effects on blood pressure, cholesterol, or cardiovascular risk. Medicaid coverage also had no statistically significant effect on employment status or earnings.
The science is pretty clear, access to health insurance over a two year period for relatively healthy people improved some aspects of their lives but is no panacea. How these findings are interpreted depends on if you live in a red state or a blue state:
A great deal of controversy exists about reducing the number of uninsured people in the United States through Medicaid expansion. Advocates for Medicaid point to evidence showing that Medicaid has been an essential part of the nation’s safety net, providing access to comprehensive health care for the nation’s most vulnerable.
Critics of Medicaid, on the other hand, believe Medicaid has put a tremendous strain on state budgets and increased dependency on government programs. They argue for state-based solutions that place more emphasis on subsidizing enrollment in private insurance for the low-income uninsured. The findings from the Oregon Health Insurance Experiment are cited by both sides as evidence in support of their positions.
Oregon did not take away coverage from required populations. This was coverage provided to folks who would not have been Medicaid eligible otherwise. Alabama is poised to take coverage away from patients on dialysis, patients with complex seizures, and premature infants. It will be a different experiment.
Kaiser has synthesized the evidence on Medicaid’s contribution to the health of the population and it is as follows:
- Consistently, research indicates that people with Medicaid coverage fare much better than their uninsured counterparts on diverse measures of access to care, utilization, and unmet need.
- Children with Medicaid and privately insured children compare quite closely in their access to and use of preventive and primary care. The uninsured do not have access to such care due to expense
- As distinct from access to primary care, access to specialty care has emerged in some research as a weakness in Medicaid relative to private insurance.
- Compared with both privately insured people and the uninsured, Medicaid beneficiaries have much higher rates of ED use. However, a substantial body of research investigating this disparity more closely indicates that poorer health and access challenges in Medicaid both play important roles in explaining Medicaid’s higher ED visit rates.
- Research investigating the quality of care received by Medicaid beneficiaries is limited, but two new analyses, one focused on health center care and the other on hospital care, indicate that the care received by people with Medicaid coverage tracks closely with benchmarks for high quality.
- One study found statistically significant but small differences at the national level between the shares of Medicaid and privately insured adults who received perfect hospital care which was more related to regional differences.
Their conclusion is as follows:
In its totality, the research on Medicaid shows that the Medicaid program, while not perfect, is highly effective. A large body of studies over several decades provides consistent, strong evidence that Medicaid coverage lowers financial barriers to access for low-income uninsured people and increases their likelihood of having a usual source of care, translating into increased use of preventive, primary, and other care, and improvement in some measures of health. Furthermore, despite the poorer health and the socioeconomic disadvantages of the low-income population it serves, Medicaid has been shown to meet demanding benchmarks on important measures of access, utilization, and quality of care.
For you, Danielle. Continue to help me keep fighting the good fight.