19 March 2016

When physicians say "No"

Your next steps

This post is for parents who find themselves in the situation of being told that treatment will not be offered to their child even though they think that treatment is in their child's best interests.

This is likely to be the experience of most families who want invasive treatments for a child with trisomy 18 in the UK.

Want this in the UK for your child with trisomy 18?
Expect opposition.

The first thing to know is that there is clear guidance for physicians on this subject. They have both professional and legal obligations in resolving the conflict between you. The onus is not on you to manage the conflict. However, many families find themselves in the situation that physicians are failing to manage the conflict appropriately.

They may find that health professionals will neither support them in their desires for higher level treatment nor take active steps to oppose the current treatment level they are providing, thus putting the child in the position of receiving what we have termed 'torture care': where the medical care is inadequate and causing suffering, but there is no plan either to provide the appropriate medical support in order to relieve suffering, or to implement a full-on palliative care plan. The parents may find that health professionals escalate behind their back, threaten them, or suggest moving to extremely high-level steps (like court) without trying more moderate approaches (like mediation). They may find that physicians imply that they are difficult, failing to protect the child's best interests; putting the child through suffering. They may use guilt as a technique for manipulating parents. Many parents feel caught up in a place of manipulation and game-playing.

This should not be the case. When you (as a parent) and a physician do not agree on what is in the best interests of your child, this is simply a disagreement. The physician is not 'arrogant', or wanting your child to die. You are not 'difficult', or failing to prioritise your child. You simply disagree. If you can both acknowledge that what each of you want is what is best for the child, but you disagree on what that is; if you both accept that either, or neither, of you may be 'right', and that you now need to work together to try to resolve this conflict with mutual respect - then this should be an easier situation. (It will never be easy.)

Parents: I acknowledge that you may find yourself in a situation in which your physicians are not willing to take the approach that 'this is a disagreement that needs to be resolved', instead implying that you are wrong, and rather than working with you with mutual respect, they seem to be actively working against you. I don't assume that all physicians live up to their professional obligations; in fact, I know they don't. However, I would strongly suggest that you do your best to aim to work with the physicians and to employ an attitude of wanting to resolve the conflict. Regardless of how they behave, and despite the fact that the obligation lies with them. Nobody wins if you get into a war, least of all your child. Take the high ground (and forgive yourself when you can't).

Links to the official guidance for physicians from the General Medical Council (GMC) and Royal College of Paediatrics and Child Health (RCPCH) are available here.

So what are the key things you need to know?

  • As a parent, the general presumption is that you have the right to make medical decisions on behalf of your child, unless either they have the capacity to do so themselves (unlikely for a child with trisomy 18) or you lack the capacity to do so.
  • Physicians are under no legal or professional obligation to provide treatment that they do not feel is in the child's best interests.
  • The best interests of the child should be the centre of any decision, and should be the focus for you as parents and for the clinical team.
  • 'Best interests' take into account not only clinical factors, but also wider issues such as social circumstances, overall prognosis, quality of life, emotional impact, etc. Be certain when asking for or discontinuing treatment that you are sure that this is best for your child. It can be hard to separate your own interests, and pressure from health professionals, family and friends, etc. from the best interests of your child when decision-making. Taking time to think decisions through carefully, whenever possible, is important.
  • Generally the presumption is that treatment should be continued (or provided) in pressured situations where there is not sufficient time to make the decision. So if, for example, your child was in severe respiratory distress and required intubation, this should be provided, thus allowing time for clinical assessment and joint decision-making between yourselves and the medical team. The exceptions to this are if the treatment is unlikely to be successful, or if the resulting burdens for the child are considered to be too much. Some physicians may defend inaction in the case of a child with trisomy 18 on the basis of those exceptions.
  • If you and your healthcare professionals disagree, the onus is on them to work towards consensus with you. This is generally done through full and frank discussion so that you can understand the benefits and risks of the proposed treatments, your child's individual clinical situation, and the likely prognosis both with and without treatment, as well as the reasons why the medical team do or do not want to provide the treatment. The discussion should also enable the healthcare team to understand and assess why you do or don't consider this treatment to be in your child's best interests. Often, such discussion will enable you all to reach a mutual agreement.
  • If you cannot reach consensus, then the healthcare team may involve outside services in your discussions. This may include an advocate or a religious leader. If, for example, you are objecting to withdrawing treatment for religious reasons, a religious leader may be able to represent your point of view to your healthcare team. An advocate is there to help you express your views more clearly to the physicians. If you feel overwhelmed or beaten down during discussions, I would suggest asking for the early involvement of an advocate.
  • Both the medical team and yourselves are entitled to request second opinions on your child's treatment at this point. While there is no legal right to a second opinion, it is considered good practice for the healthcare team to seek them when a disagreement arises. You may feel that a second opinion suggested by or requested through your healthcare team is unlikely to be balanced, and may choose to seek outside second opinions through other channels.
  • If you continue to disagree, the medical team may seek formal mediation between them and you. In some trusts, parents can initiate this process themselves. Mediation is particularly helpful when mutual respect and the ability to work together has broken down, and you seem to be at deadlock. Nobody wins in this situation. Mediation can often help to break the deadlock, and move people back into working together and focusing on the child's interests over their own conflict.
  • The medical team may seek an ethics opinion from their own or another hospital's clinical ethics committee. This opinion is admissible in court. It would be good practice for parents to be able to input into the ethics committee. However, in many hospitals, this is not standard practice. If ethics is suggested, or if you are concerned your case is heading this way, I would suggest you initiate contact with the chair of your ethics committee and ask for involvement. If the details are not available on your own hospital's website, you can find them on the UKCEN (UK Clinical Ethics Network) website.
  • If you continue to be unable to reach agreement on what is in the child's best interests, there is an obligation on the part of the hospital to ask for a legal opinion. Initially, they will likely seek advice from their own legal team as to the likely outcome if they were go to court for an opinion. I would strongly suggest that parents who are in a prolonged disagreement with their medical team on treatment seek their own legal opinion wherever possible. Sadly, with the current restrictions on legal aid, access to lawyers for most families in these challenging situations are severely restricted.
  • If the medical team feels that the outcome of a legal process will go in their favour, then at this point they should escalate the case to court for a judicial opinion. They have been unable to resolve the conflict between themselves and the parents; they feel their opinion about whether to withdraw, withhold or initiate treatment is in the child's best interests, and that the child is suffering due to the parents' decisions. They should move to seeking a judge's opinion in a timely fashion.
  • Parents: you too can choose to ask for a judge's opinion, especially if physicians are denying treatment. Initiating court proceedings yourself often works in your favour. If you feel your child is suffering because of significant delays in managing the conflict between yourself and the physicians, there is a moral obligation on you to seek a legal opinion if you are in a position to do so.
  • The court's opinion about what is in the child's best interests will usually dictate the treatment that is provided or withdrawn.
  • The timescale for this process, from the beginning of a conflict to a court opinion, varies depending on the urgency of the situation, the willingness of the medical team and the hospital management team to escalate and move forward, and the parents' engagement. I would suggest strongly that delays in this process cause only harm to children, and that all parties should move through this process in a timely fashion, in order to reach agreement with minimal delay.

In a pressurised situation

  • As previously mentioned, generally, good practice in a pressured situation is to provide treatment and then take time to assess and make decisions in the usual way. However, there are exceptions to this.
  • In a situation in which parents and physicians have a disagreement in a very pressured situation, for example when a child needs urgent surgery in the middle of the night and physicians are refusing to provide this while parents feel it is in the child's best interests, then, if consensus cannot be reached in an appropriate timescale - which may be within minutes or hours - there should be immediate escalation for an urgent court opinion. This can be arranged over the phone, day or night. Parents can initiate this process, although the professional obligation to do so lies with the medical team.
  • If an emergency court opinion is sought and given, the decision will usually be reviewed formally in court the next day.

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