Map of life expectancy at birth from Global Education Project.

Tuesday, April 12, 2011

Malicious Prosecution

I am just aghast at the actions of the Essex County, Massachusetts District Attorney who is prosecuting a mother for attempted murder because she failed to administer chemotherapy to her young son, who later died of lymphoma.

That probably sounds pretty awful but here are the facts. She was single, trying to cope by herself with the demanding caregiving regimen for a severely sick child. She observed that the chemotherapy made him much sicker, and she was afraid it would kill him. So she stopped it. She had no support, the doctors weren't communicating with her, she believed he was rid of the cancer, she had nobody to talk to or advise her, so she made a wrong decision. That's all. It's tragic but exactly who is to blame here?

Recently I've been educating myself about pediatric lymphatic cancers. Children who fail chemotherapy are given hematopoeitic stem cell transplants (HSCT) as a last resort therapy. (These are popularly called bone marrow transplants but that is imprecise. It is the stem cells that produce blood cells, not the marrow per se, that is infused.) First they destroy the child's stem cells, then they replace them with donor cells. This means the child's immune system is completely destroyed; it takes up to two years for it to fully reconstitute as the various types of white blood cells start to be produced one by one.

Meanwhile the child has to take a complex medication regimen, including, ironically, immunosuppressives to prevent the donor cells from attacking the child's own body (which is called graft versus host disease). Because the child is highly vulnerable to infection during this time, families have to take extraordinary precautions -- meticulous hygiene, excluding visitors with contagious diseases, limited contact with pets, no houseplants, no playing outdoors, no crowds -- which means no school, no birthday parties, no restaurants or baseball games or parades. The child faces strict dietary restrictions. Caregivers must be alert to any signs of infectious disease and contact doctors if they see any.

Now just imagine -- you've been trying to nurture and comfort this child who has been horribly ill, tortured with chemotherapy and all sorts of painful and terrifying procedures in a strange city (only a few hospitals in the country do these procedures) and a weird alien environment. You yourself have been desperately afraid of losing the child. Now you have to transform yourself into a drill sergeant, and deny the person you love most in the world most of what children desire. Grandma and Aunt Tilly may well have different ideas about what is best for the child. The siblings feel neglected and also deprived in many ways. The doctors are 500 miles away and you have no support.

I expect that something has to give. Complete adherence to these demands is just impossible. I don't know that people are likely to completely understand and remember all the rules anyway, but regardless, they will have to make decisions about what is most important and where they can make an exception or relax one of the rules. Maybe they decide that a certain medication isn't really necessary, or it's okay to go to the sleepover, or to Grandma's house. Whatever.

There is a very high rate of complications and sometimes the kids end up dying of the common cold. But you don't prosecute the mother.

11 comments:

Ferdzy said...

The story doesn't say, but I'm going to go out on a limb here and speculate that the mother involved is black.

'Cuz, you know, white mothers' children have tragic diseases but black mothers are bad, lazy mothers who need to be prosecuted.*


*Bitter, angry sarcasm just in case anyone missed it.

Sharon Powell said...

Dealing with any family member that is terminally ill is overwhelming much less a child. How can a court decide to prosecute a mother for not administering a medicine when the mother can not visualize the child getting better? Instead the child appears to be getting worst. One way to address this problem is by providing more information to family members, educate them on the good, bad and indifferent then allow them to make an informed decision. Patient and family education should be ongoing, in special cases a social worker/ case worker should be assigned to provide the necessary supports. No matter how painful a decision is for not accepting treatment because of the possible outcome, a family member should be able to make that decision. Most caring mothers will not make the decision for their child to die, but they also do not want to see that child suffering beyond what any human being should.
It is a tough decision but under no circumstance should that mother be prosecuted. There is no guarantee that the child would have survived even if he got the chemotherapy. That mother should be provided with grief therapy and mental health counselling to deal with the death of a child which she might even blame herself for.

Cervantes said...

Actually the mother is white. But there is indeed a tendency in our culture to denigrate Black mothers, as with the hysteria about maternal opioid use, which actually isn't really harmful to the fetus, which clearly has racial overtones.

The jury found her guilty. It's an atrocity.

You're right Sharon Powell, the crime here is the failure to provide her with any support. I don't necessarily agree that she should be allowed to make the decision she made, but she needed counseling that she didn't get.

kathy a. said...

oh, this is horrible. it really sounds like this was a failure of communication and support -- mainly support. the side effects of chemo can be terrible; no one person should be left alone with doing that to her child.

my nephew was diagnosed with a brain cancer at age 9; he died, despite best and all efforts, at age 12. alexander had surgery, chemo, radiation, more chemo, a stem cell transplant, laser-knife radiation. he and his entire family had EXCELLENT support, right through the end.

but it was excrutiating. he was so distraught at one point that he threatened to kill himself with a kitchen knife -- this was one of the most loving and happy kids i ever knew. they always had a barf pan at the ready, even when he was feeling better and not on chemo.

i want to stress the kind of support they had. he had an entire oncology team. his chemo and procedures [and horrible times with complications] were in a hospital near home, with his team. he, his parents, and his siblings were all in therapy via the hospital. when he was declared terminal, nothing more could be done but palliative care, his oncologist and the team and the therapists all assembled to talk to his parents, and plan how to make his death a good, gentle one. he had hospice care at the end -- also very supportive of the family.

Anonymous said...

This story is so awful I want to forget it immediately.

What ever happened to compassion? To understanding and empathy? To suspending judgment?

The US (and other places in the ‘west’ as well, but the US is a leader here) is turning into an insane circus of vicious, competitive sadism, backed up by an out of control, skewed judiciary system, security apparatus, and self-serving bureaucracy.

Why can’t US citizens grasp that dog-eat-dog, or for that matter the ‘war’ - aka occupation - of Iraq only serves the interests of very small, powerful groups?

That the dogs that will be eaten are the citizens themselves? Like this distressed mother?

Ana

kathy a. said...

i'm kind of mystified about how the jury found intent to kill, which is part of the criminal charge.

they could not have gone for a murder charge, even though he died, because he may well have died anyway -- they could not prove causation. even the prosecutor said that she took away "his chance at a miracle." so, this was all about her intent.

there will certainly be an appeal.

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My Grandmother was diagnostic with lymphoma , our doctor said us that Treatment of some other, more aggressive, forms of lymphoma can result in a cure in the majority of cases, but the prognosis for patients with a poor response to therapy is worse

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To know that a family has a terminal disease must to be horrible... Someone should to do like campaign to give support to the families.