Tag Archives: Lisa Freitag

Extreme Caregiving: The Moral Work of Raising Children with Special Needs


Laurie says:

Extreme Caregiving (Oxford University Press, 2018) is brilliant, lucid, and visionary. Lisa Freitag (M.D.) resets perspectives on the realities of the experiences of parents/caregivers of “medically complex” children. It is both comprehensive and well written, dealing with a complicated subject with clarity and compassion. She deals with a wide range of issues over many kinds of special needs: the medical, behavioral, social, financial, family, institutional, political issues, and the interactions among those factors. I know Lisa, and have heard her speak about this book in process; I’ve read pieces of it. The final book still amazed me.

In the preface, she cites Emily Perl Kingsley’s famous essay, “Welcome to Holland,” in which a parent’s expectations are likened to a trip to Italy, and the birth of a special needs child is instead arriving in Holland. Not what was expected, but a nice country with its own challenges and rewards. Lisa ends the preface: Holland fails for me because it brushes aside many significant difficulties, perhaps making it easier for us to ignore hardships the parents might endure. That place which is not Holland is neither composed of unmitigated loss and hardship nor entirely full of windmills and tulips. It is neither completely dire nor completely wonderful. The gifts that exist in this place are often hard to recognize and sometimes come at great cost. This is a world, as we will come to see, wherein unbearable sorrow and heady joy exist side by side, embodied in the same child. (p xix)

She discusses at length the expectation that parents must be relentlessly positive, leaving no room for any expression of grief and pain. Be saints or be stigmatized as bad parents. It is not just the children who need community and institutional help (and will still need those things when they age to adulthood), but the parents/caregivers. Saints don’t need help – but people do.

Dr. Lisa Freitag is a pediatrician who has worked among these families. Her knowledge of the complex interactions among medical and treatment professionals, social workers, and caregivers and their children is extensive and profound. The book contains many stories of the actual experiences of parents and families, including her own family’s with her developmentally disabled brother, now in his 40s. Throughout, she is unsentimental, practical, compassionate and humane.

Medical science is responsible for an explosion in the number of “medically complex” children, many of whom would have died at birth even 20 years ago. Lisa feels that the medical community has support responsibilities beyond sheer medical expertise. While the legal responsibilities lie on the parents, the millions of special needs children impact us all.

Extreme Caregiving is a remarkable and important book. This review doesn’t remotely attempt to cover the vital topics she discusses. The book needs to be widely read.

We need to recognize that families dealing with extreme caregiving are all around us, are us, and we need to help ourselves and our children live loved lives.

This is the lesson in humility and grace that parents learn by becoming extreme caregivers. During those sleepless nights, listening sometimes with desperate attention to determine their child’s needs, they learn to understand and forgive weakness. They learn to live with dependency and vulnerability, in their child and in themselves. And they learn something about being human, making it up as they go along. (p 231)

Lisa has posted occasionally and powerfully at Body Impolitic. Here is a link to her post The Will of the Body, Part 1 – Pain

(Amazon is currently selling the trade paperback for $19.01, discounted from $35)

“Saving Lives”?

Dr. Lisa Freitag is a former pediatrician in Minneapolis/St. Paul (the “Twin Cities”), in the north midwest of the United States. We hope to feature some of her thoughts and observations in this space from time to time.

Lisa Freitag says:

All along the highways leading to the Twin Cities, a billboard advertising North Memorial Hospital has recently sprouted. When I trained as a doctor thirty years ago, a hospital advertising itself via a billboard would have been suspiciously tacky, enough so to make people reconsider going there for treatment. But this is now, and it is not unusual to find signs all over the place, advertising one clinic or another. North Memorial is an old, respectable hospital, neither suspicious nor tacky. In fact, the sign says the hospital has won some kind of hospital contest, placing in the top 50 in the USA. But that is not the sign’s only message. Plastered over an impressive photograph of a shiny hospital building is the phrase, “Its all about saving lives.”

“Saving lives” has become a national pastime. Quitting smoking saves lives. Exercise programs save lives. Seat belts save lives. Drugs save lives, except of course when they’re illegal and then treatment saves lives.

Most especially, doctors save lives. We all have seen it hundreds of times on TV. If the person who is shot, or has sudden chest pain, or is coughing up blood makes it to the hospital, they will get better, instantly and without question. If they do not, they will die. Sometimes they do die in hospitals, but only if House is having a bad day.

Nonetheless, it is all quite clear. Sickness or injury equals death and death is bad. Doctors are on the front line fighting against death. Their victory is always unqualified. Life is good; time to recovery and eventual quality of life are irrelevant. Lives saved are good.

But is medicine really only about saving lives?

I worked as a pediatrician for almost thirty years, and I don’t think I ever saved a life. There was that time when the twins stopped breathing in my office and I carried one of them to the hospital. Their mother to this day thinks I saved their lives, but it was really just dumb luck, plus the team at the hospital ER. And the fact that the virus they were sharing got better remarkably quickly. I have sent sick kids over the years from various offices and emergency rooms to hospital floors where teams of specialists have made them better. Most of them were not dying. Of the few who were dying, many did not get better nearly as neatly and efficiently as they would on TV.

Vaccines save lives, or so the vaccine company commercials would have me believe. Tons of vaccines were given on my orders. There were four shots at a time at some of those checkups. That’s a lot of lives saved. But because I understand statistics, I can’t think of it that way. Most of those kids were not going to get any of the diseases the vaccine prevents, and most of the ones who did weren’t going to die of those diseases. I think of those shots as a mild and necessary cruelty.

I gave out a lot of antibiotics, which certainly can be lifesaving in the right circumstances. A couple of the kids to whom I gave amoxicillin for something that looked a bit like pneumonia, might have died without it. Probably not. At one point I thought I was saving lives by being rigorous in my treatment of ear infections. Then the study came out that showed that ear infections get better just as quickly without any treatment at all. (Antibiotics routinely prescribed for colds have always been completely unnecessary. Colds are caused by viruses, against which antibiotics have no effect whatsoever.)

I rarely saw patients in the hospital. Most of my practice was in a clinic, with daily forays into a local hospital that really wasn’t equipped to handle the truly ill child. We sent the really sick ones to the pediatric equivalent of North Memorial. Specialty hospitals like North Memorial do transplants and cardiac surgery and all kinds of procedures that are way more impressive than prescribing amoxicillin. Perhaps North Memorial does a much better job of saving lives than I ever did.

But still, is medicine at North Memorial really all about saving lives? Is that the only thing they do? Maybe they send the little things like splinters and broken toes and ear infections elsewhere, in order to get on with the important lifesaving business. I doubt it. Those little things are much too lucrative. I suppose North Memorial could just consider itself so good at saving lives that its staff thinks of everything they do in that context: <deep voice> Mrs Smith, that splinter we just removed will NOT now become infected with flesh-eating bacteria, and you can thank us for saving your life every time you see our billboard.</deep voice>

“It’s all about saving lives.” Is saving lives the only thing that is important about medicine? I worry about this question in part because of a little girl who had drowned two years before I met her. She had been taken to a lifesaving hospitals, where her diagnosis was merely “near drowning,” and her body still lived on without her. In part, it’s because of my father, whose life was saved by a multitude of impressive procedures costing almost a million dollars over the twenty years after his heart attack, allowing him do die instead of his most-feared illness, Alzheimer’s. In part, it’s because of North Memorial’s latest and greatest lifesaving device, the LVAD, which when implanted in a chest next to a failing heart will essentially give it CPR compressions indefinitely. Dick Cheney has one.

If you say, “those lives were all saved,” you don’t have to ask Why?

What other important things might you be missing while you’re patting yourself on the head for saving lives? Most of what I did from day to day was listen to worries. If days spent telling parents that I saw no sign of serious illness counts as saving lives, I saved thousands of them. “The baby is crying. Could it be meningitis?” “The kid has a headache. Could it be a brain tumor?” “The temperature was 102.” The fatal possibilities are endless.

Most of these worries are generated by the system of lifesaving that North Memorial is a part of. The more we brag about our ability to save lives, the more we live with the constant, nagging knowledge that life is fragile. If huge institutions are constantly taking steps to save lives, we must  be fearful at the slightest evidence of threat.

It is not all about saving lives. The attitude that lifesaving is the very most important thing may be detrimental to the practice of medicine.

And since it’s not all about saving lives, I think we need to have a good long discussion about what, exactly, medicine is all about.