THE TWILIGHT ZONE
New guidelines aim to clear a path through the ethical minefield of caring for people unresponsive after a coma. Health editor Adam Cresswell reports
MONICA Blackstock still finds herself slipping into the present tense to describe how her son Brendan performs jumps on his BMX bike at skate parks, and on the steep hill where the family lives in the Melbourne suburb of Pascoe Vale. Except Brendan doesn’t jump any more, nor is he likely to.
Now 26, Brendan — the 1.87m giant she called her ‘‘ mini-ox’’ — has been in a minimally responsive state for 14 months, since the night in April last year when hit by a car while returning home on his motorbike. He had the right of way, but that is of little relevance now. He suffered skull fractures, brain haemorrhages, broken ribs and bones, lost a kidney and damaged his liver.
He sleeps and wakes like anyone else, but he can’t walk or talk, and it’s not clear if his brain still has any words to form. He breathes through a tube in his throat, to stop him choking on his own mucus, and is fed through a tube into his stomach so he doesn’t inhale his food. Physiotherapists visit him three times a week to stop his muscles contracting and his limbs seizing up.
‘‘ It’s a nightmare, one that no parent should have to live through,’’ says his mother, who has spent up to 10 hours a day helping to care for him since the accident. ‘‘ It’s just devastating — it pulls everybody apart. When you talk about children (in front of him) he starts to cry, because he has a little daughter.
‘‘ Sometimes you think he is aware that you’re there, but does he know it’s me? Or is it just an image he sees? We just don’t know.’’
What awareness Brendan has of his own condition or anything else is unknown, because there is no way of measuring awareness or consciousness in people who cannot communicate.
And until recently, there has not even been an agreed way to assess or treat patients in a minimally responsive state (MRS), or the associated condition post-coma unresponsiveness (PCU) — where there is even less sign of conscious activity.
PCU is the preferred new term for what used to be called persistent vegetative state, which is now deemed unsuitable because it labels the patient as a vegetable, incapable of conscious thought — something nobody can accurately determine. The former term also suggests the condition is permanent. In fact, slow but significant improvements — while rare once a patient has been in PCU for some months — can and occasionally do occur.
Draft guidelines for the care of patients with PCU and MRS— the first in Australia — were published this week by the National Health and Medical Research Council.
They are intended to help both doctors and patients negotiate the difficult issues these cases throw up: what are the responsibilities of health professionals in these cases? Who gets to decide what care is given, or not given? Who should be given information about the patient? And if there are conflicting views about what treatment is best, or what the patient them- selves would have wanted, whose opinion should count?
Nicholas Tonti-Filippini, the ethicist who chaired the working committee that drafted the new guidelines, says although voluntary, they should help prevent any instance here of the legal bunfight that occurred in 2005 over the fate of US woman Terri Schiavo, in a persistent vegetative state since 1990.
Her case was dragged through the US courts, and even Congress, amid a bitter dispute between her husband and her Catholic parents over whether her feeding tube should be removed. Her parents had claimed there was still a slight hope she might improve, but she was allowed to die in March 2005 after the Supreme Court refused to intervene. An autopsy later showed her brain had shrunk markedly, and no recovery could have occurred.
Tonti-Filippini says the new guidelines will improve communication and decision-making between health professionals and family members, heading off disputes and also allowing for earlier resolution of disputes. ‘‘ We would hope that if people used our guidelines, they wouldn’t find themselves in court,’’ he says.
Information on PCU in Australia is so poor there are not even accurate figures for the numbers of patients affected.
This week’s report says official figures put the number at less than 100, but this contrasts with an estimated 10,000 to 25,000 in the US — which ought to equate to between 1000 and 2500 in Australia, a shortfall Tonti-Filippini says is ‘‘ quite extraordinary’’.
‘‘ We don’t know what that (shortfall) means — whether PCU patients are not being picked up in the figures, whether the classifications are being done differently, or whether they perhaps do not survive acute care,’’ he says.
A previous NHMRC document, endorsed in 2003 as a first stage of addressing the lack of Australian guidelines, created the first guide for diagnosing PCU, defining it as a post-coma state akin to a ‘‘ twilight zone’’, in which patients appear to sleep and wake normally, but appear otherwise unaware and do not Continued inside, page 19
Home care: Monica Blackstock with son Brendan, post-coma unresponsive after a motorbike accident.