Guidelines to navigate the twilight zone
Continued from Health cover speak or respond. The definition, restated in this week’s documents, say PCU should not be diagnosed until the patient has been in this state for at least four weeks after emerging from the coma.
Minimally responsive state — added to the terms of reference in time for this ethics report — in turn is defined as a patient showing ‘‘ small and inconsistent’’ signs of awareness, such as saying one or two words, or moving a finger or blink when asked to.
The question was referred to the NHMRC in 2000 by the NSW Government after a court case in which a judge criticised a hospital’s decision to remove food, drink and treatment from a brain-damaged man who had a heart attack after a heroin overdose. The decision was made within days of admission and without consulting the man’s family, who sought an order for life support to continue.
The judge criticised the fact that there was no adopted or recognised standard in Australia for diagnosing chronic vegetative state, and said there was an obvious need for clear criteria on diagnosis and when treatment may be withdrawn.
The draft guidelines do not set rules on this or other points, but instead stress there should be ‘‘ a presumption . . . in favour of continuing maintenance care’’ such as feeding. They say while the question of whether to withdraw care may sometimes arise, ‘‘ the impact that prolonging the person’s life may have on the lives of the family is not relevant’’.
‘‘ The question is never whether the patient’s life is worthwhile, but whether a treatment is worthwhile,’’ the guidelines say.
Whether or not to resuscitate a PCU or MRS patient who has a heart attack should be determined by the cause of the arrest. If the arrest was caused by ‘‘ an underlying condition from which there is little chance of recovery . . . attempts to resuscitate are likely to be futile’’. But if caused by an obstruction that could be easily cleared, that should be attempted, the document suggests.
On other points, the draft guidelines stress the need to foster good decision making by keeping the best interests of the patient — rather than those of the family or carers — paramount.
When disagreements occur, these might be overcome by preferring some views over others, the guidelines say. The patient’s own wishes, if known, should inform decisions over what is in the patient’s interest, and a written statement of these wishes, if it exists, should take precedence over a relative’s recollection or oral account.
If health professionals are concerned that a patient’s representative may not be making decisions in the patient’s best interest, they should ensure a court or tribunal reviews those decisions.
Because it can never be certain how much awareness patients have, the document also says health workers and family should always include the patient in conversations held in their presence, as if they were listening — and should ‘‘ be aware of what should and should not be said in the person’s presence, and its possible effect’’.
During the writing of the document committee members heard ‘‘ harrowing’’ stories of patients whose muscles had constricted due to inadequate physiotherapy, potentially causing permanent damage.
‘‘ You would hear of somebody’s hands being clenched so tight that the fingernails start to penetrate the hand,’’ Tonti-Filippini says. ‘‘ We are hoping to change the placing of patients in circumstances where they can’t get adequate care — one of those circumstances is nursing home care.
‘‘ They don’t usually have the physiotherapy and other expertise that is needed to overcome some of the difficulties that patients with these conditions can have.’’
Other members of the committee that drew up the guidelines support those concerns.
Associate Professor John Olver, director of rehabilitation at Melbourne’s Epworth Hospital, said brain injury patients were slow to recover and needed better access to physio services that were not predicated on quick results.
‘‘ We have had patients in nursing homes who have come back for some reason or other, and because someone realises they show small signs of improvement they end up back in mainstream rehab, and have been able to get out of those nursing homes.’’
That certainly gets Monica Blackstock’s support. ‘‘ I would like to see more help available for people like Brendan, rather than being in nursing homes. Being in a family environment, with familiar things around them, is far better for them.’’