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RATIONING of health care is always going to be a vexed issue, and never more so than when it comes to neonatal intensive care.
A paper published online last week by the Journal of Medical Ethics puts the question bluntly, asking: “Which newborn infants are too expensive to treat?”
“We are already rationing healthcare, and will always be rationing”, writes Associate Professor Dominic Wilkinson, a medical ethicist and neonatal intensive care specialist at Adelaide’s Women’s and Children’s Hospital. “The only question is how we ration…”
If it is the only question, it’s certainly a big one.
Health resources will always be limited, meaning a decision to provide expensive treatment for one person will have an impact on the care available to others. But some patients will always tug at our heartstrings more than others, making it hard to deny treatment, particularly to a tiny premature baby.
“Should funds be provided to NICUs [neonatal intensive care units] or to other important healthcare priorities such as antenatal care, childhood vaccinations and support for those with disabilities?” Professor Wilkinson asks.
A fair distribution of public health funds would be based on the needs of patients, potential benefits of treatment and an assessment of the costs, he writes.
Such cost–benefit analyses are a routine part of government and administrative decision making, although the exclusion of an expensive new drug from the Pharmaceutical Benefits Scheme can still lead to a storm of controversy.
But for those at the front line of the health care system, assessing whether the potential benefits of a treatment justify the cost is even more fraught.
Doctors face considerable ethical pressure to focus on what is best for an individual patient, Professor Wilkinson writes. And it can be hard for them to acknowledge that a recommendation to limit treatment might have more to do with cost than the interests of the patient.
“It is much easier to convince families to allow their loved child or elderly relative to die if the families are told that treatment can no longer help the patient (even if that is not strictly true)”, he writes.
“Nevertheless, it is, I would argue, a mistake to conflate benefit to individual patients with benefits to others. It is important to keep the two distinct for the sake of clear thinking and honest communication.”
From an ethical point of view, it’s hard to argue with that, though I feel for the doctor trying to explain to relatives that a possibly beneficial treatment is not going to be offered for cost reasons.
In his own field of neonatal intensive care, Professor Wilkinson suggests two possible ways that rationing could be applied.
One would be to offer newborns with a poor prognosis a trial of treatment for a defined period — say 48 or 72 hours. If there is no definite response then treatment would be withdrawn.
A second possibility might be to establish an explicit prognostic threshold below which infants would not receive intensive care treatment.
The location of that threshold would obviously be a matter for debate but babies assessed as having, say, a 10% or lower chance of survival without profound impairment — based on the prognosis for those born at 22 weeks’ gestation — might be identified as a group that would not receive treatment.
Professor Wilkinson’s paper is a commentary on a book by Catholic bioethicist Charles Camosy, who has a different take on the issue.
In his response, Professor Camosy argues that costs of treatment should be a primary consideration as the interests of the individual cannot be separated from those of the community. He also rejects factoring in the child’s likely quality of life as he does not accept that “a child’s life can be more or less worth living”.
Whatever solutions we find — and Professor Wilkinson makes it clear his are only suggestions — we need to find a way to manage the rationing of health care fairly and transparently.
This is not just a question for neonatal care, but one that will become increasingly fraught at the other end of life as our ageing population makes ever more insistent demands on the health system.
Jane McCredie is a Sydney-based science and medicine writer.
Posted 4 February 2013
I disagree, TR – if it is not the people expending the resources and seeing the outcomes who understand what is cost-effective, how is the general community to do so? Certainly the community needs to decide where the priorities and limits are, but they can only do that with information from within the specialty.
Frankly it is not for doctors to determine if a treatment is too costly. An ICU specialist has neither the economic knowledge of Australian health care costs nor expertise in this area. If the community wants to ration healthcare in some way this needs to be a transparent debate in the community at large that is not clouded by misleading words such as quality of life or burdensome treatment (both such highly subjective terms as to be virtually meaningless in many situations)
Modern health care has become so clever at treating all ills that it no longer knows when to stop. It is increasing disability and adding to stress on families and carers, by treating those of any age where the existing disability is significant and prognosis for the new condition is poor, where escalating disability is the most likely outcome. To me it is the modern ‘wrong’ that we are perpetrating in medicine – we put the individual on a ‘trajectory to treat’: which is hard to get off. The burden of health care is increasing on individuals and their families. It seems we are no longer allowed to die of natural causes where is is appropriate.
Here’s one idea.
Offer to give the relatives the bill for all this ultra expensive and ultimately wasted resource.
Pretty quickly people will stop believing “Where there’s life there’s hope (as long as I’m not paying.”)
How many of these babies have a good life, by any realistic criteria?
Much better for us to wind back the clock about 20 years, let them die, let the parents grieve PROPERLY and (with appropriate genetic counseling?) have another go. Far kinder to all that leaving them to suffer the inevitable long drawn out and widely destructive self recriminating processes that eventuates.
Another concern is the broader effects of this excessive “treatment”. How many drug resistant bugs are being bred in the bodies of neonates or geriatrics, as they decline towards an inevitable and untimely death?
And, how many directors of these units are really qualified to make these decisions? I refer not to the almost magical ability some have to get the numbers right even though the patient dies. I refer to the personal psycho-socio-mythological processes they have going on in their own heads.
Sue Ieraci… I guess if we would not do it to our pet hamster, we should not do it to them.
Perhaps much of the population needs to be made more aware of death and that it is not unnatural and in the great majority of cases, is not painful.
This must be one of the most vexed questions – not just in terms of cost, but also the suffering that some babies might have during a short life. I see lots of severely disabled kids having yet another round of IV antibiotics for aspiration pneumonia, or treatment for prolonged and repetitive seizures. If we had a good tool for prospectively knowing which children might suffer the most, would we use it?
What must be emphasised in this discussion is that neonatal intensive care is actually very cost-effective in comparison with most high tech interventions ( whether medical or surgical ) applied to adults.
Provision of intensive care to an infant <1000g costs about $4-5000 per quality adjusted life year gained. Doing my coronary arteries or putting me on expensive statins can cost 3 to 10 times as much, depending on my risk factors and the exact drug or technque used. Such interventions pass without comment in our society, which is not surprising, given that much of the power resides in the hands of middle aged men like me.
It is also worth remembering that interventions such as provision of prophylactic antibiotics to HIV infected children in Africa cost about $45.00/QALY, which may say something about our sense of values.
If one asks doctors whether they would treat a premature infant with 50% survival chance and a 50% chance of significant disability should he/she survive, the consensus is overhwelmingly for non treatment. When the same question, with the same statistics, is asked about an older child or an elderly adult the answer is very different, strongly favouring treatment. A high percentage of our health care budget is spent on adults in the last years of their lives, this has value which cannot be judged simply in terms of dollars, but when the financial argument is used in neonatology one cannot but look at how much lower health care costs would be were the same standards to be applied in adult intensive medicine.
We must also examine the impact of provision of treatments of questionable benefit to those of us who have money and are in the middle years of life (expensive private obstetric care, statins for low risk patients, various endosopies and arthroscopies). This again goes largely unquestioned, as do the drivers. Our fee for service system rewards those doing procedures rather than those who practice preventive medicine. One only has to look at the USA to see a horrible exampe of where this will lead.
If we are going to have a rationing/cost-effectiveness debate, at least let it be evidence driven and not by cherry-picking of particular practices or procedures. We should rather look at the cost-effectiveness data and the drivers of costs in our health care sytem.
It’s a very vexed question, but there is no evading it. It must be addressed.
The decision of NICE in the UK not to cover Avastin for some advanced cancers is correct. I would not wish to prolong my life for four months under those circumstances but perhaps that is selfish, as my affairs are in as much order as they ever will be