The case of baby MB is heart wrenching. At the age of 7 weeks his parents noticed that something was wrong with their newborn son, and they took him to the local children's hospital. He has been in the hospital ever since it was discovered that he has SMA type 1 - spinal muscle atrophy. The baby is on a ventilator and he is fed via a PEG tube. He is given intensive around the clock nursing, and he receives regular physiotherapy to help with his condition.
The case went to court because the baby's doctors want to end his life by withdrawing the ventilation, and the parents disagreed with the doctors. Thanks to the journalists at the BBC new the case was made public and so we, the public, have been kept informed about the burdens and the benefits faced by Baby MB on a daily basis. The baby's doctors and medical team believed that the best option available was to removed the ventilation and end his life. The medical experts brought in by each side, as well as the appointed guardian, all believed that based on the "iffy" notion of quality of life, a decision should be made to end his existence.
In a somewhat lengthy judgment, Justice Holman disagreed with the conclusions of the medical team, concerning what is meant by quality of life and whether or not the burdens of this baby's life outweigh the benefits. In part Justice Holman said:
30. There is thus a very formidable body of medical evidence of very high quality in this case which is all without exception, to the same effect. Although there is much detail in the various individual reports and also in the considerable oral evidence which I heard, I believe that the summary under the heading "Present Condition", and one or two further quotes from the first part of the Joint Expert Report gives a fair overall summary of the medical opinion.Present Condition
M has lived for a long time for a child with his condition (type 1 spinal muscular atrophy). The main reason for this is the very high standard of care he has received from his family and hospital staff. The experts believe that the continuous bowel antibiotics that he has been receiving may have played an important role in his long term survival. He is not in a persistent vegetative state. He is able to make some very limited voluntary responses to his environment. It is not possible to give an opinion about his cognitive function as this is impossible to assess. His responses vary both during the day and from day to day. These minor changes are not clinically significant and do not change the conclusions of our report. Most children with his condition would have normal cognitive function. Four of the experts had reviewed a recent video, which documents some movements in M. The presence or absence of these movements does not change our conclusions below. These movements are not a useful prognostic indicator for the long term and do not alter the long term natural history of the condition. It is very difficult to assess how much discomfort or distress M experiences. It is inevitable that some interventions particularly blood sampling, deep endotracheal suction, physiotherapy and bagging are uncomfortable for him. An assessment of his quality of life is very difficult. Two of the experts noted that assessment of quality of life in people with neuromuscular disorders by health professionals is often pessimistic…
We do not believe that medication (either anticonvulsant medication or analgesic and sedative medication) is impairing his awareness, responsiveness or motor abilities.
We were agreed that M's prognosis is very poor and that death is inevitable. We were agreed that a management choice should not prolong any distress and if possible be acceptable to the family."
Under the heading of "option 4", to which I will later refer, but which is the option of withdrawing ventilation and allowing him to die, the Joint Expert Report says "The experts all agreed that if only M's interests were being considered then this option would be in his best interests."
The judge has been very thorough in considering the evidence before him, and despite the overwhelming evidence of all of the experts in the case, as well as the conclusions of the guardian ad litem, he concluded that in this case, since baby M was cognitive then his life must have some value, and that includes the interaction that he has with his parents. In other words Justice Holman has disagreed with the experts that baby M would be better off dead and that the ventilation should be withdrawn. At the same time he stated that should the baby’s condition continue to deteriorate and further invasive procedures were required, then the doctors do not have to go ahead with such procedures, allowing the child to die naturally, rather than forcing his death because of the withdrawal of his ventilation.
This judgment on baby M is very sound. It is a judgment that is based upon case law, not just what is before the judge. Justice Holman even considered the case of Charlotte Wyatt and whether or not her case fitted the circumstances of baby M. He also considered a variety of other cases that had been brought before the British justice system, and he used as a part of his decision-making these other cases that have provided procedures for medical staff in hospitals where they are faced with patients who have no chance of recovering from their condition:
1
2. Of the many reported authorities which have been placed before me, the two which, in different respects, may most nearly approach the circumstances of the present case are Re C (A baby) [1996] 2 FLR 43 decided by Sir Stephen Brown P on 3rd April 1996, and Re C (A minor) (Medical treatment) [1998] Lloyd's Law Reports Medical, page1, decided by Sir Stephen Brown P on 18th November 1997. In the first case he did make an order giving approval and permission for artificial ventilation to be discontinued to a baby of 3 months, which would result (as in the present case) in immediate death. But in that case, as a result of meningitis, the baby had suffered "a serious degree of brain damage" and was "subjected to repeated convulsions due to the brain damage". She had what was described as "cerebral blindness" and could not see or hear in any normal sense of those terms. Sir Stephen said "It is almost a living death. She is not in a coma as medically defined; she has a very low awareness of anything, if at all". I could not use that description of M. Further, in that case the parents themselves agreed with the decision (see page 45 C).
13. In the second case, the child concerned, like M, suffered from Type 1 SMA. She, like M, was conscious. Further, she was able to recognise her parents and to smile. However, unlike M, she was only on intermittent positive pressure ventilation. The doctors considered, and the parents agreed, that she should be weaned off that ventilation before she became fully dependant upon it. The issue was whether, if or when she suffered a respiratory arrest, positive pressure ventilation should be restarted. The parents sought an order that it should be, but Sir Stephen Brown P declined to grant one, in part because of the well established principle that a court will not order a doctor to undertake a course of treatment which the doctor is unwilling to do (see page 5, left hand column); but also because Sir Stephen expressly held that it was in the best interests of the child not later to reimpose ventilation if needed (page 5, right hand column). Since the doctors considered that a respiratory arrest would be inevitable (see page 3) the case is very close to the present one. But it did not involve or contemplate the immediate death of the conscious child; and the actual withdrawal of intermittent ventilation was agreed to, and supported, by the parents.
There were other cases that were also considered by justice Holman in his decision. In each case there has been an established principle that the treatment is not invasive and that it will not have the effect of prolonging life in a very hopeless situation. Take for example the situation where someone presents to the emergency department and is at the point of being clinically dead at the time of presenting for treatment. The question has to be how far will the doctors go in prolonging life in such a situation because of the nature of the medical equipment that is available today? There are times when such procedures might be considered excessive, with the end result that a brain dead person is attached to a machine, and a relative has to give permission for the machine to be switched off. There are two legal implications that must always be considered: (1) has the action led to the death of the person via intentional homicide that would lead to charges for criminal behaviour; and (2) is the action likely to be seen as negligence by the patient’s family?
There are times when the prolonging of a life is an unnecessary burden upon the patient. Take for example the case of an elderly woman who is nearing her 99th birthday. She begins to have a series of heart attacks that are in effect the signaling of the end of her life. In such a situation there is a need to consider how far the medical team should go in attempting to revive this elderly patient before the lack of intervention might be considered negligent. At what point in time in this case would it be considered the revival of the patient to include procedures that are invasive and burdensome. There has to be a point in such a case where common sense prevails for the patient is at the end of her life, and invasive procedures should not necessarily be used if they are in fact a burden to the patient.
Keeping this in mind, one can see how Justice Holman has considered all of the angles relating to baby M’s condition and his prognosis. The NHS trust wanted to discontinue the treatment. The expert witnesses and the guardian ad litem agreed with the doctors and medical team of the case, that according to their standards the baby’s life is intolerable and therefore they should be allowed to remove the ventilator thus causing baby M to stop breathing. However, what was more important in this case is that baby M is cognizant. This has led Justice Holman to reach the conclusion that quality of life issues should not be clouded by the opinions of others with regard to what is to be considered tolerable or intolerable. As a result he concluded that the present treatment was to remain intact, but if the baby’s condition reached further deterioration such that he has a heart attack, then the doctors do not have to initiate invasive treatment for the heart attack, thus allowing the baby to die from natural causes rather than from a contrived cause, which is what the NHS trust had requested.
There are times when the prolonging of a life is an unnecessary burden upon the patient. Take for example the case of an elderly woman who is nearing her 99th birthday. She begins to have a series of heart attacks that are in effect the signaling of the end of her life. In such a situation there is a need to consider how far the medical team should go in attempting to revive this elderly patient before the lack of intervention might be considered negligent. At what point in time in this case would it be considered the revival of the patient to include procedures that are invasive and burdensome. There has to be a point in such a case where common sense prevails for the patient is at the end of her life, and invasive procedures should not necessarily be used if they are in fact a burden to the patient.
Keeping this in mind, one can see how Justice Holman has considered all of the angles relating to baby M’s condition and his prognosis. The NHS trust wanted to discontinue the treatment. The expert witnesses and the guardian ad litem agreed with the doctors and medical team of the case, that according to their standards the baby’s life is intolerable and therefore they should be allowed to remove the ventilator thus causing baby M to stop breathing. However, what was more important in this case is that baby M is cognizant. This has led Justice Holman to reach the conclusion that quality of life issues should not be clouded by the opinions of others with regard to what is to be considered tolerable or intolerable. As a result he concluded that the present treatment was to remain intact, but if the baby’s condition reached further deterioration such that he has a heart attack, then the doctors do not have to initiate invasive treatment for the heart attack, thus allowing the baby to die from natural causes rather than from a contrived cause, which is what the NHS trust had requested.
