by Professor Dominic Wilkinson, @Neonatalethics
Professor of Medical Ethics, Consultant Neonatologist
Our society has good reason to provide special treatment to people with severe brain injuries and their families.
But our current “special treatment” for a group of the most severely affected people with brain injuries leads to devastating, agonising, protracted and totally preventable suffering.
Consider the following cases:
Case 1. Sally has severe progressive dementia. She is no longer able to communicate, and does not recognize any of her family members. Sally had previously spoken with her family and told them that if she were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Sally’s doctor has been called to her nursing home because she has pneumonia. Although the infection could be treated with antibiotics, the doctor and family together decide not to. Sally dies a few days later.
Case 2. Sandra has suffered a severe head and spinal injury in a car accident. She has been in intensive care for several weeks, but there is no sign of improvement. Her brain scans show extensive damage, and it is likely that if she survives Sandra would be severely disabled. Sandra had previously spoken with her family and told them that if he were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Although Sandra could be kept alive for some time if treatment continues, the doctors and the family together decide to stop life support. Sandra dies a few minutes later.
Case 3. Susie suffered a severe brain injury months ago. She was left in a vegetative state. She has no response to those around her. Susie had previously spoken with her family and told them that if she were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Susie’s family wish to stop the artificial feeding that is keeping her alive, but her doctor explains that a decision would need to be made by the courts. There are long delays before and during the court application procedures. Four years after her brain injury, the court authorizes withdrawal of artificial feeding. Susie dies some days later.
These cases are fictional, though the last one (Susie) is based on a real case (Miss S), which went to the Court of Protection in England and Wales earlier this year. In the real case, a set of avoidable factors meant that decisions were delayed for more than three and a half years. An important paper, released today in the Journal of Medical Ethics, analyses the cause and consequences of the delays. The paper describes in vivid detail the distress and desperation of Miss S’s family.
Why so long?
The biggest reason for the delay is because, in England and Wales, life and death decisions for patients like Susie are treated completely differently from decisions for other patients. Since the famous House of Lords case of Tony Bland, it has been lawful to stop artificial feeding in patients who are in a permanent vegetative state. However, the way that law has been interpreted requires cases to go before the court. The process of gathering documents, medical reports and expert assessments inevitably takes time. Although decisions can sometimes be made quicker, it is not unusual for life-prolonging treatment to be continued for years before a decision is finally reached.
Why so different?
But why should Susie’s case be treated so differently from those of Sally or Sandra?
It is not because there is something especially legally or ethically troubling about decisions about life-prolonging treatment. Doctors and families make decisions like these for many, many patients every day. They are not required to go to the court.
It isn’t because there is something special about the permanent vegetative state. The brain problems in Sally and Sandra’s case are, if anything, less severe and more uncertain than in Susie’s – yet they do not need to go to the court.
It isn’t because there is something special about making decisions that will lead directly to a patient’s death. In Sandra’s case, and in many other cases in intensive care, doctors stop ventilators or stop drugs, meaning that the patient dies within minutes. Only in exceptional cases would intensive care doctors be required to go to the court for permission to stop treatment.
The reason for special treatment in Susie’s case is because this is a decision about artificial feeding rather than a decision about a ventilator or about antibiotics. But as the judges concluded in the Tony Bland case, artificial nutrition is a medical treatment, like any other. And like all medical treatments, it will often be good to provide, but sometimes will do more harm than good.
Decisions about life support for patients with dementia and severe brain injury are not easy. In every case, doctors and families should carefully weigh up the risks and benefits of continuing treatment, and take into account the patient’s wishes. Where there are particular difficulties in reaching decisions, or particularly unusual features, it may be necessary to go to court. But for the vast majority of cases, that is not necessary.
Cases about artificial feeding in vegetative patients are currently treated as special cases. But there is no ethical justification for such special treatment. Long agonizing delays in decision-making cause massive unnecessary suffering to families who are already traumatised and grieving. They also lead to huge and unnecessary expense for the health and legal systems.
The law is clear. If life-prolonging treatment would benefit the patient, is available and affordable and would have been what they wanted, it must be provided. If it isn’t in the patient’s best interests, and wouldn’t have been desired it must stop. Now.
, Kitzinger C. Causes and consequences of delays in treatment-withdrawal from PVS patients: a case study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32 J Med Ethics Published Online First: 23 September 2016 doi:10.1136/medethics-2016-103853
Maintaining PVS patients against their former wishes is unacceptable practice because it creates unnecessary suffering to families and unnecessary expenses for the health system. Is there any reason associated with the patients’ interests to believe it is a form of cruelty? Can it be considered harmful to the patient? The answer to these questions seems to depend on how we conceive Susie’s interests. Is not to experience life under these circumstances in her best interests? In principle, her vegetative condition doesn’t allow her to experience life (or death). If we want to claim that this special treatment is cruel to her, we would need to argue that her interests are being frustrated in any other way. They are, if we think that irreversibly unconscious people, (and, some argue recently dead people as well) retain some sort of surviving, or posthumous interests, based on their formerly expressed vital preferences (she had the preference not to live that way). Can a treatment be cruel if it only harms an irreversibly unconscious individual’s ideal about life?
Cruelty is usually attributed to something that inflicts actual pain or actual suffering. But PVS patients do not experience suffering at all. If this is true, that would lead to the conclusion that the “special treatment” PVS patients often receive is form of cruel punishment, but only to her family members? However, this leads to a conclusion which is hard to swallow: if the only interests that are at stake are those of the family, maintaining the feeding tube would be acceptable in cases where the family requests it. What about those cases where the family wants hydration and nutrition be maintained but the patient had previously rejected that treatment?
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