"she really looked so unhappy and uncomfortable. She spent most nights in bed with me and then during the day she was having no, very little quality of life"
'Quality of life' is a measure of the balance of good and bad things in someone's life.
People use the words 'quality of life' in different ways. The simplest way to understand it is that 'quality of life' refers to the balance of good and bad things that someone faces. There are good things like pleasure, or comfort, happiness, or satisfaction, but there are also bad things like pain, discomfort, frustration, sadness and distress. We can think about the balance of good and bad things in someone's life at one point in time, or over a longer period or in the future. Because different people find different things enjoyable or unpleasant, and weigh them up differently, quality of life can vary a lot between people in similar circumstances. For decisions about life support treatment we are thinking about the quality of life of a child from their point of view. It is not about comparing one person's life with someone else's.
"he was always happy, always smiling like right to the last day, the last evening. He was very sick but he could still manage a smile"
Yes. It is appropriate, and important to assess a child's quality of life when we are making decisions about their medical treatment. Quality of life is a part of all decisions in medicine
We use quality of life all the time when we are caring for children. For example, when we are choosing which treatment to give a child we try to weigh up the good and the bad of different choices. We work out which option will give them the best quality of life. One example is when we are deciding whether or not to perform surgery for a child. For example, a child may have some difficulty walking. An operation would cause them some short-term pain and discomfort, but would help them to walk more freely. When we weigh up the risks and harms of surgery against the benefits for the child we are making an assessment of the child's quality of life with and without surgery.
All treatment has risks and benefits.
However, people disagree about whether quality of life should be a factor in decisions about life-saving treatment. Some people worry that using quality of life might lead to discrimination against disabled people. Other people, though, make the point that ignoring quality of life can also lead to discrimination against people with very serious health problems. When a child has a terminal illness and is dying doctors and families usually work hard to make sure that the child is comfortable and that invasive treatments and tests are avoided. But this is also a type of quality of life decision - weighing up the good and bad things for the child.
For every medical treatment we need to think about the potential benefits and harms of treatment. Sometimes treatment does more harm than good for the child.
"And in the end … we chose quality over quantity, which was a very hard decision to make…we felt that it would be very unfair to the personality of that human being [to put her through chemo or radiation]"
No. There are different types of decision, and these mean different things for life support treatment.
There are three main types of 'quality of life' decision for life-saving treatment.
Treatment does more harm than good because of side effects.
Sometimes life-support treatment causes very serious side effects. For example breathing tubes can be very uncomfortable or even painful for the child. Strong drugs can make a child feel very sick. Often those side effects can be treated. It may also be worth the side effects if the treatment can bring the child through their illness. But sometimes the side effects of treatment are so severe that they outweigh any good effects. The treatment becomes harmful for the child. If that is the case it is important to recognise the need to stop that treatment. There may still be other types of life support treatment that wouldn't cause as many problems for the child, and would be appropriate to provide. For example, parents and doctors may decide that the side effects of the ventilator or of CPR are too great, and so these treatments will not be used. However, in the same child antibiotics, oxygen and suction would not cause side effects and could be used.
Treatment does more harm than good because of a child's health problems.
Some children have illnesses that can't be cured. There is often a lot that can be done to make a child feel more comfortable even when there is no cure. There are palliative care doctors who specialise in treating bad symptoms. However, rarely, even with the best palliative care some children are left feeling sick, uncomfortable, or in pain most of the time. One example might be a child with a bad form of cancer that has spread throughout their body. Another example would be a child with a very severe skin condition from birth leading to blistering with the smallest touch. For these children, there comes a point where it becomes important to focus treatment on the child's comfort, and to avoid any treatment that could prolong the child's suffering. This may mean stopping or avoiding all forms of life support treatment.
Treatment does not benefit the child.
Finally, some children have forms of brain damage that are so severe that they have little or no awareness, and have no prospect of improvement. For example, this might be the result of a very bad car accident, or children may have been born with a major problem with the development of their brain. When this happens, although medical treatment may be able to keep the child alive, it can seem to those who care for the child that the child does not get any benefit from treatment. The child is not aware of themselves nor of their surroundings. The child may not be suffering, so treatment is not necessarily harmful. But neither does treatment seem to provide any benefit for the child. In this situation, parents and doctors may come to decide that only treatments focused on the child's comfort should be provided.
"it would not have been fair…ventilated the whole time. Existing on a machine. That wasn't Lucy"
Quality of life is important in adults and children, but is sometimes harder to assess in children
Sometimes, when we have done all that we can to improve someone's quality of life, they remain very seriously ill, uncomfortable, and in pain. Adults in that situation will often decide that they do not want treatments that will prolong their discomfort. A seriously ill child or baby may not be able to speak to us, but those who are caring for them sometimes feel that the child would not want further intensive treatment. This is the reason why quality of life is important for decisions about life support. If we ignore quality of life for children, it means that we give them treatment that very few adults would be prepared to endure.
There are some differences for decisions made in children. One difference is that decisions in adults can be easier. Adults can often tell us whether or not they want treatment provided. Or we may have a good idea what the adult would have wanted. But very young or very seriously ill children can't tell us what life is like, and can't tell us what they want us to do. We have to imagine ourselves in their shoes, and that can be very difficult. Sometimes decisions for young children are extra difficult because we can't be certain what their future will be like. But at other times, doctors can be very sure what future problems the child will face if they survive. (See
Life is very precious. But people who believe that all life is sacred can also be concerned about a child's quality of life.
Sometimes people compare the idea of 'quality of life' with that of 'sanctity of life'. They worry that a decision to stop life support treatment based on 'quality of life' undermines the value of life itself, or expresses a lack of respect for life. They might worry that their religion does not allow them to make decisions based on a child's quality of life.
But a 'sanctity of life' approach does not require doctors to provide all possible treatment to save human life. What is more, careful attention to the risks and benefits of life support treatment is quite compatible with someone viewing life as precious and sacred. All of the major religions have supported the idea that medical treatment sometimes only serves to artificially prolong dying.
John Quilter, philosopher at the Australian Catholic University has written: "The doctrine of the sanctity of life, properly understood…does not imply that quality of life considerations are irrelevant." His colleague, Catholic bioethicist Dr Bernadette Tobin made the point, "Sometimes you will better respect the sanctity of someone's life by letting her die, by improving the way she dies, and by improving the way that she dies, than you will be prolonging her life with treatments that would be futile or overly burdensome".
You may find it helpful to speak to a hospital chaplain, or to an expert from your religion to talk about these concerns. (See also
Religion and life support).
No. But it is important to make sure that decisions are not influenced by fear or biased attitudes towards people with disability.
One concern about quality of life decisions is that these might represent a form of discrimination against people with disability. This is because sometimes doctors and parents decide not to provide life-support treatment to a child with a very serious illness or disability, though they would have made a different decision if the child did not have those health problems.
But different decisions do not necessarily mean that there is discrimination. We use the word 'discrimination' to refer to unfair choices. It is unfair when someone doesn't get a job because of their race, gender or religious views. But it would be fair to make a decision about life support because the risks or harms of treatment outweigh the benefits. When a child is seriously ill or has a very severe disability this can make life support treatment more risky or more harmful, or it can reduce the benefits from treatment. If that is the case it is understandable and appropriate that decisions are different.
One important thing is to make sure that doctors and parents are not affected by unduly negative attitudes towards disability. Parents are often fearful or distressed when they discover that their child is going to have a serious illness or disability in the future. But sometimes that fear comes from lack of knowledge about what life will really be like for the child. Doctors, too, can sometimes have negative views about life with a serious illness or disability.
You may find it helpful to look at some written information about children with the sort of health problems that your child is facing. There are research studies that have tried to measure quality of life in children and adults with serious health problems, and you could ask if these are available. You could ask your child's doctors whether you can speak with specialists who care for children with those problems. There may be a chance to speak to parents of children with the same problems - sometimes there are support groups available with parents who have been in a similar situation.
"everyone's situation is very different even if your child has the same condition"
People have different views about what quality of life would be acceptable for themselves or for their child. However, almost everyone agrees about some decisions.
Different people find different things enjoyable or unpleasant, and weigh them up differently. So someone's assessment of their quality of life can be quite different from another person in similar circumstances. This makes decisions about life support tricky. Doctors can have quite different views from parents about a child's quality of life. The child might have different views again, though we often do not know what they are. This can sometimes lead to disagreement about whether or not life support should be provided.
It can be helpful to explain to your child's doctors what is important to you in thinking about quality of life. You could talk about your hopes and fears for your child, the good things that you would like them to experience, and the bad things that are important to avoid.
In general, because there may not be a right or wrong answer about how to assess a child's quality of life doctors will usually be guided by parents' views. If parents feel that a child's quality of life is acceptable, doctors will often be prepared to provide life support treatment even if they personally do not share that view. But the child himself or herself may not necessarily share their parents' views either. There are some situations where very few or no adults would choose life support treatment for themselves, for example, if they were in very frequent pain not relieved with treatment, or were permanently unconscious with no prospect of recovery. In those situations doctors may feel that it is unreasonable to provide life support treatment even if parents want it to be provided. (See
Agreement and Disagreement)
- What are the risks and benefits of life support treatment for my child?
- If my child survives, what would everyday life be like?
- Is there any scientific evidence on quality of life in this condition?
- Is there a support group for the problems that my child is facing?
- Is there anyone I could talk to, to help me understand what life would be like for my child and my family?