Readers of this blog will hopefully remember the story of Haleigh Poutre, a child in Massachusetts who was abused and then neglected, failed and abandoned by just about every professional whose job it was to act to safeguard her welfare and safety. She became the subject of a life and death* court battle that sanctioned her death but rallied just one day after the ruling was made. (*- The press and bioethicists used and continue to use “end of life” to characterize the court battle, evidently drawing inspiration from Lewis Carrol in terms of using ludicrously flexible terminology.) Here’s a summary I wrote back in 2008:
Haleigh Poutre narrowly escaped the death planned for her by medical professionals at Baystate Medical Center and publicly-appointed guardians from Massachussets DSS. These professionals all signed off and went to court to seek removal of both ventilator and feeding tube from Haleigh Poutre just 8 days after her admission to the hospital. Poutre was in a coma, the result of injuries allegedly inflicted on her by her adoptive mother and stepfather, Jason Strickland. (NDY issued a press release calling for a larger investigation than actually happened)
Poutre’s adoptive mother committed suicide. Strickland, quite probably to avoid being charged with murder, fought the DHS in court, seeking to have Poutre’s life-support maintained.
In a case of incredible irony, the case took enough time to allow Haleigh to improve. In fact, news reports that she was awake and responsive emerged just one day after a judge approved the removal of Haleigh Poutre’s feeding tube.
If you’re looking for a hero in this story, you can stop now. There aren’t any.
I’m happy to say that there are now “heroes” in Haleigh’s life. By “heroes” I mean people who love her, care for her, and look out for her interests. That’s not really a “hero,” but her earlier life had no one who fit that description. The news was shared with the public on August 3rd when the Boston Globe published an update on Haleigh Poutre and her life now.
The minister winds up his welcome to some 400 people, and soon lyrics flash karaoke-like on a large screen. A spirited Christian pop song, “Blessed be Your Name,” fills the Westfield Evangelical Free Church.
In the back row, a young woman, sitting in a wheelchair next to her adoptive parents, lights up.
Though she can’t read all the words, she sways to the music and claps her hands, the nails painted pink with white polka dots. She loves cheerful tunes and a crowd, and on this Sunday, she has both.
Keith and Becky Arnett could have predicted that Haleigh, 20, would brighten at this part of the service.
She entered their lives as a 14-year-old foster child, then known as Haleigh Poutre, who had been at the center of a passionate end-of-life court battle. Her singular story of abuse, compounded by government lapses, drew national media attention. It remains one of the darkest chapters in the state’s child-protection system. (Emphasis added.)
The term “end of life” is emphasized here for a reason. It’s also used in the subtitle of the article. Haleigh has the dubious distinction of being the only person I know of who has had a battle over whether or not she’d be allowed to live described as “end of life” before, during and after the court battle to determine whether or not she would live or die. It was presumptuous and inappropriate to characterize her publicized court case as “end of life” before the verdict, and it’s absolutely ludicrous to describe anything about her as “end of life” now – unless, of course, you want to gloss over the messy realities and avoid truly difficult discussions.
Haleigh, btw, should no longer be referred as “Haleigh Poutre;” After years of being foster parents, Keith and Becky Arnett adopted Haleigh, whose name is now Haleigh Arnett.
Lessons Mislearned?
Wesley Smith and Thaddeus Pope, both familiar to readers of this blog, have written in response to the Globe’s update on Haleigh. I don’t agree with some of the analyses they offer. In Wesley’s case, it’s more a matter of emphasis or perspective. My differences with Pope are more substantive.
- Like the Globe, Pope refers to cases like Poutre’s as “end of life” which clouds the actual nature of such cases, which are ones that are – to put it bluntly – cases to decide whether or not to end a life. When Pope and other bioethicists promote an array of disparate situations to which to apply a term like this, it’s hard not to suspect that bioethicists, assisted suicide advocates, etc. actually want the public to be confused about a number of life and death topics in order to avoid informed discourse. The press, of course, just parrot the professional jargon they’re fed.
- Thaddeus Pope claims that “her (Haleigh’s) story powerfully illustrates the limits of prognostication for some critically ill patients.” That’s not accurate at all. Her story illustrates what can happen when doctors ignore long-established guidelines regarding wait periods for comas in making a determination of persistent vegetative state. Eight days doesn’t come close.
- The Globe, Wesley and Pope all praise legal “reforms” enacted in the wake of Haleigh’s near-death experience. I’m not familiar with the final form of the second reform passed, regarding outside opinion on life and death decisions. The first version (and for all I know the final version) only called for a second outside opinion for wards of the state. I never understood why it was limited to wards of the state. Did they think individuals with biological or adopted families don’t get bad medical advice of the life or death type?
I do know more about the first “reform” passed in Massachusetts, ironically named “Haleigh’s Amendment,” sponsored by then-state Senator Scott Brown (yes, that Scott Brown).
Here’s what I wrote back in 2008:
Back in March, for example, almost no coverage was given to the inaptly named “Haleigh’s Amendment” that was introduced – and passed into law:
‘Haleigh’s Amendment’
During debate last week on legislation pertaining to the abuse and neglect of children, which is intended to strengthen the Commonwealth’s oversight of children under the charge of the State, an amendment written by Sen. Scott Brown, R-Wrentham, was passed unanimously. The amendment protects victims from those who have been charged with their abuse or neglect.
Brown filed “Haleigh’s Amendment” in response to the tragedy of the Haleigh Poutre case in Westfield in 2005. Haleigh had been hospitalized as the result of alleged abuse at the hands of her adoptive mother and stepfather who had burned and beaten her into a coma with a baseball bat. While on life support, Haleigh’s stepfather attempted to obtain guardianship of her even though he was suspected of the abuse.
This amendment would prohibit an individual from being appointed a guardian or medical proxy if they have been charged with assault and battery, or neglect of the incapacitated child. In this case, the amendment would have removed any ambiguity as soon as the stepfather was charged.
Currently, the court may appoint a guardian for a person who is unable to make or communicate informed decisions due to physical incapacity or illness.
Please re-read the above with the circumstances of Haleigh Poutre’s near-brush with death in mind.
If this law had existed when she was admitted to the hospital, she’d be dead now.
That’s right. She’d be dead. Jason Strickland, motives aside, would have had no standing to challenge the DSS-appointed guardians in court. Haleigh Poutre’s death would have proceeded smoothly, efficiently and – most important of all – quietly.
It’s easy to see how this prevents the State from being embarrassed in a similar way in the future. It’s less easy to see – using Haleigh Poutre’s story as the rationale – how this is seen as furthering the “best interests” of children.
And, while the abuse of Haleigh was especially horrific, this bill strips all rights in medical decisionmaking from parents who haven’t actually been convicted of anything – and the bill strips those rights even from those charged with any level of neglect.
Please read the entire article at the Globe. As usual, I’ve devoted so much time to the bad stuff, that I have no room for the good stuff. And there’s plenty of that in the article. Beyond her family, she lives and engages in a larger and accepting world, collected some unexpected supporters along the way, and made some amazing progress. For some happy reading, go check out “A new life for Haleigh.”
The lesson to take from this tragedy is that decisions about medical proxies and evaluating people’s motives are less important than objective guidelines about when “end of life” decisions should even be discretionary. As you pointed out, 8 days of a coma is not even close. *That* is the import important lesson rather than whether the state or a parent suspected of abuse is assigned the role of guardianship.
Fantastic article. I am so glad that Haleigh has been able to be given a wonderful life.
Then all the state has to do is charge someone, not have them convicted of child abuse, to get them out of the picture.