“About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethics in the care of children with disabilities at Montreal Children’s Hospital last week.
“The rallying cry is that we need to cut down on the use of what are called marginal therapies – on drugs, therapies and procedures that cost a tremendous amount of money but offer little benefit. It’s a short manoeuvre from that mindset to take certain people with certain conditions and marginalize them.”
Dr. Feudtner showed a photo of one of his patients – a baby who uses a ventilator – and said: “We don’t want to end up having a bureaucrat 1,000 miles away saying ‘this is marginal medicine and we need to cut it out.’”
In analyzing the costs and benefits of treatments, economists measure quality-of-life years gained or lost as a result, he said. These analyses are typically based on models that assume low quality of life for people with chronic illness and disability.
Studies of self-reported satisfaction with life in people with disabilities, however, show a different picture.
A large European study of children with cerebral palsy found they rated their quality of life on par with their peers.
Research shows that patients rate their happiness and satisfaction higher than their families do, while their families rate it higher than doctors and nurses do. And the longer a person has a disability, the happier they are with their life. One to two years after a spinal-cord injury, people tend to rate their life as good as, or better, than before.
“Who judges quality of life in people with disabilities?” Dr. Feudtner asked. Should it be a panel of doctors, a random sample of the population who haven’t experienced disability or a group of patients or parents who understand firsthand what it means to live with the condition?
“Our current analyses of quality of life don’t account for the amazing capacity of people to adapt and grow, to handle difficulty, and to say ‘my life is good,’ without changing the difficulty.”
That’s because ratings are determined by able-bodied people who try to predict the impact of disability on everyday life.
Current analyses of quality of life don’t factor in the cost or benefit of a drug or treatment on people connected to the patient, such as parents, siblings and grandparents.
“Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient?” Dr. Feudtner asked. “If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression. If a family receives social services, does their level of anxiety and depression drop?
“Right now a huge amount of the costs of raising children with severe disabilities is being born by the families.”
In a study of children receiving palliative care, Dr. Feudtner found nearly half were facing substantial financial strain. Those who reported the direst finances had children whose health had declined most steeply.
“It’s hard to figure out how to capture these costs,” he said. “But to disregard them means that you really aren’t operating from a societal perspective.”
With unsustainable health-care costs projected over the next decade, “ethical pronouncements about ‘it’s the right thing to do for children’ will not have the same sway they had in the past,” Dr. Feudtner said. “We have to marry the ability to speak to deep ethical values and go head to head with accountants.”
Joey, above, is a child with complex medical needs.