When a doctor sees a patient for a consultation, it is easy to assume that everyone wants the same thing. The patient wants help with their ailments. The doctor wants to provide that help.
But sometimes things can get in the way. We have all experienced it to some degree.
Perhaps the patient wants a kind of help that the doctor believes is not appropriate. This happens all the time in general practice when people ask for antibiotics when they have a cold.
But what about the opposite scenario? What if the doctor wants to give treatment, but the patient refuses. This is also a familiar situation for most doctors (and perhaps most patients). Around a fifth of prescriptions from general practice are never actually collected, and presumably more are collected and not taken.
It’s one thing to decline blood pressure medication, but there are situations when refusing treatment can be even more challenging. What about if the illness in question is infectious, like TB? What if the illness is potentially life-threatening but easily treatable? What if the patient in question is a child, and the parents are the ones refusing?
This book, researched over 8 years, takes a massively in-depth look at this problem, crystallised in the relationship between a family of Vietnamese Hmong immigrants in California, and their doctors, when one of their daughters develops life-threatening epilepsy. The doctor-patient relationship is massively challenging. The family don’t speak English, but even once the language barrier is overcome (to an extent) with interpreters, they have unrealistic expectations from the American medical system, and a completely different set of beliefs about illness. The doctors believe epilepsy is a pathological process in the brain, while the family believe “the spirit catches you and you fall down”.
Aside from the medical parts, which are described carefully and objectively, and without portioning any blame, this book is a very touching story of a family coping with adversity in a brave and dignified way, as well as a simple history of the Hmong people of Vietnam, covering some of their early history, their legends, their beliefs, their tragic involvement in the Vietnam war, and their forced immigration.
The three tales are woven into a coherent narrative. There is certainly an element of drama in Lia’s repeated admissions to hospital, prolonged seizures and brushes with disaster. There is a sense of imminent doom in all of these, although I won’t spoil the eventual outcome by describing it here. Certainly, the odds are stacked up against Lia, her family and her doctors, all of whom have the child’s interest firmly at heart.
Some of the doctor-patient interactions are terrifying. For the first few visits to the emergency room, the doctors and the family have no means of communication whatsoever. Since the seizures had generally finished by the time Lia reached hospital, the entire reason for her visit to hospital was missed. It was only after being sent home several times that she arrived at hospital still having a seizure and the doctors realised she had epilepsy.
Later, despite complex treatment regimes, Lia would repeatedly turn up at hospital with no anti-epileptic medication in her bloodstream. Her parents believed the drugs were not working, or even made Lia worse; this may have been true, or it may not have been, and none of the protagonists could really be sure. But, from a medical perspective, stopping treatment in a child with dangerously bad epilepsy is also terrifying.
The book skates carefully through some of the dilemma’s faced by the officials trying to care for Lia – the doctors, nurses, social workers, lawyers and translators. At one stage, Lia is forcibly removed from her loving family and placed in foster care, a decision which is easy to understand but hard to justify knowing the full facts.
The end of the book revolves around a particularly severe episode, and includes one of the most striking communication failures. The paediatrician (who knows the family well) tries to explain, through an interpreter, that Lia has had a very prolonged episode of seizures and is dangerously ill. She is being transferred to a hospital with better child intensive care facilities, which she needs. He then mentions that he will be away on holiday. The distraught father hears that Lia is being transferred because her own doctor is going on holiday. He does not hear that Lia is dangerously ill.
Unquestionably, the medical management of the event at the end of the book is not optimal, but medical care rarely is. It is also clear that, although Lia’s treatment is been given correctly by her family, they are slow to call for help when the crisis does occur, hampered by their language barrier and their mistrust of the US medical system. The author cleverly steers clear of pointing fingers of blame.
Could this story have had a different ending? The events of the book occurred in the 1980s – how would this play out 30 years later? Maybe the ending would be no different – medicine does not have all the answers. But some things have changed for the better. Researchers have studied compliance (now correctly called “adherence”). Doctors are less paternalistic, more open to allowing alternative “healers” to be involved, and there would hopefully now be more dialogue around treatment decisions. Translators are more widely available, either in person or by phone, and modern doctors would hopefully find it easier to communicate with Lia’s family. Hopefully they would also make more of an effort than featured in some of Lia’s early encounters with doctors. But failures like this still occur today.
This book is far more than just a case history. I defy anyone to read this without caring about Lia, her indomitable parents, and even her doctors, who tried their hardest to fight for her and her family when others might have given up.
Attitudes and standards have changes in the 30 years that have passed, and this book was one of the catalysts for change. It is compulsory reading in some medical schools, and I think all doctors should read it.
I’ve added a further paragraph to this review below, but I suggest you don’t read it if you are planning to read the book.
[SPOILER ALERT: DO NOT READ ON IF YOU DON’T WANT THE ENDING REVEALED]
After I finished the book, which in my edition ends with an epilogue written by the author many years after the book was published, I googled the book and stumbled on this link. It’s an obituary for Lia. If you’ve read the book, you might be interested in this. It is the end of a remarkable story.