Profile
Name: Ms V
Age and gender: 34-year-old female
Situation: Has suffered multiple injuries including traumatic brain injury, in a road traffic accident. After several months in an intensive care unit, where CANH was initiated, she is transferred to your ward.
Ms V is a 34-year-old woman who suffered multiple injuries, including traumatic brain injury, in a road traffic accident. After several weeks in an intensive care unit, where CANH was initiated, she is transferred to your ward. After an initial recovery, you see minimal improvement in her condition over four months. You and your colleagues agree that you should carry out a best interests assessment, and you start to speak to the family about what views Ms V might have of her current situation.
For some patients with multiple or complex injuries or conditions, care will be undertaken by a range of different specialties. It is important to establish early on who has overall clinical responsibility, and who, therefore is the decision-maker. (Section 2.3)
Best interests discussions should have already started long before this point: the Royal College of Physicians’ clinical guidelines on prolonged disorders of consciousness recommend that best interests discussions should begin as soon as possible, within four weeks of the original injury. Beginning these discussions – which you can do before a formal diagnosis has been made and before the full potential for improvement has been assessed – does not mean that a decision will be made imminently. It means that those close to the patient are aware of all the options available and can start to think about what the patient might want. (Section 5.2)
Ms V’s parents and her long-term partner are the people who have been most closely involved with her care. You ask to meet with them altogether, and explain, that although Ms V has made an initial recovery, you believe that her future potential for recovery is limited. You explain that you need to explore with them whether it is in her best interests to continue to receive CANH.
Her parents are horrified by the prospect of stopping treatment. They demand, as Ms V’s “next-of-kin”, that she continue to receive CANH. You explain to them that because Ms V has not appointed anyone as a health and welfare attorney, they are not authorised to make that decision. In the absence of a valid and applicable ADRT, the decision must proceed on the basis of her best interests and that it is your responsibility, with the family’s help, to make that assessment. You ask them to start to think about what they think her wishes would be in this situation, and the types of things she would take into account in making a decision for herself if she were able to do so.
There can be some confusion amongst family members as to their role in making decisions for a patient who lacks capacity, and many still believe that as “next-of-kin” they have a particular legal status. It is important to clearly explain to family members at the outset how the decision-making process works, and what role they will play within it. As the clinician with overall responsibility for her care, you have responsibility for making the decision, in her best interests. (Section 2.3) The BMA and RCP have a leaflet that can be given to families and friends explaining this information and their role in the decision-making process.
Even where family members do have decision-making powers, they cannot demand or insist on medical treatment that is deemed clinically inappropriate.
Ms V’s partner tells you that she had never contemplated being in this situation, and they had never had a conversation about death or dying. From her you learn that Ms V was intelligent, was part way through completing a masters degree, and wanted to work with children. She describes her as popular and outgoing and that she loved going to concerts and music festivals. She tells you that Ms V was fastidious about her appearance, and rarely left the house without having her hair and make-up done – even to go down to the corner shop. She believes that Ms V would be “mortified” at being seen by friends and family as she is now and would be especially troubled by her young nieces and nephews finding it “scary” to visit her.
In some cases, particularly where they were previously young and healthy, patients will have given little thought to what they would want in this particular situation. Instead, evidence about aspects of the patient’s personality, character or they way they lived their life should be considered to see if they provide a clear indication of what their views would have been. Decision-makers should not speculate on what the individual’s views might have been in the absence of reliable evidence. (Section 2.6)
When talking to those close to the patient about the patient’s wishes, feelings, beliefs and values, it is important to be clear about whether those are in fact the views of the patient, or whether those close to them are expressing their own views. Asking for examples or evidence to back up statements, or seeking views from a number of people can be a helpful way of testing the information. (Appendix 1)
The decision must be about what is in the best interests of the individual patient, not what is best for those close to them. But you can consider the impact of the decision on others, as long as this would have been a relevant factor for the individual patient themselves. (Section 2.6)
She is adamant that even the best case scenario described would not be acceptable to Ms V, and that she would not want to be kept alive “like this” and would “rather be dead”. She tells you that Ms V’s best friend has text messages they exchanged after watching a documentary about the Hillsborough Disaster in which Ms V described Tony Bland’s situation as “no way to live”.
Under the Mental Capacity Act 2005, decision-makers must not be motivated by a desire to bring about the patient’s death. A family member using an expression like “they would rather be dead” does not equate to such a desire, and should not be interpreted as such. (Section 2.6)
It is important to speak to a wide range of people who might have relevant information about the patient. In some cases, this may go beyond immediate family and it can be helpful to ask the family or healthcare team whether there is anyone else that should be involved. How wide this consultation will be will depend on the individual circumstances, but should be proportionate to the consequences of the decision being made. It is for the person responsible for making the decision to make that judgement and be able to justify it – and they should not be motivated by a desire to achieve a particular consensus or outcome. (Appendix 1)
Anything relevant that the patient wrote down – in texts, e-mails, letters, or social media – can be useful evidence of their views and opinions on their current situation. These should be carefully assessed to determine whether they are throwaway remarks or evidence of more firmly held beliefs or wishes. (Appendix 1)
Her parents disagree, however, and say that Ms V was brought up as a Catholic and shares with them a strong belief in the sanctity of life. They tell you about her volunteer work as a young woman with children with severe learning disabilities, which they believe shows how valuable and worth living she thought all lives were. They accuse Ms V’s partner of lying to you, and ask that you do not involve her anymore in discussions, particularly seeing as they were not married or in a civil partnership.
It is important not to dismiss or discount information, simply because it does not fit with what you have heard from others, or because it does not align with your opinion of what is in the patient’s best interests. You should listen to everybody and make your own judgement as to what weight to give a particular view. Asking for examples or evidence to back up statements or seeking views from a number of people can be a helpful way of testing the information. (Appendix 1)
The views of “blood relatives” do not carry greater weight than those of others, and it is important to be clear about this. Your role is to hear from those involved in caring for the patient or otherwise interested in their welfare, and to make your own judgement as to how much weight to give to certain views.
While these discussions are ongoing, you ask a specialist in prolonged disorders of consciousness (PDOC) from a nearby Trust to assess Ms V in order to establish her level of awareness and her potential for future recovery.
The Royal College of Physicians’ clinical guidelines for prolonged disorders of consciousness are clear that assessment must be carried out over a period of weeks by a trained PDOC specialist, using one or more of the structured assessment tools recommended in the guidelines.
The importance of obtaining a precise and definitive diagnosis of either VS or MCS has reduced over time as in practice, it is information about the patient’s current condition, their expected recovery, and the level of certainty with which this can be predicted that is most important in determining what will be in the patient’s best interests. A full assessment is still important to assess this and to be able to make a prediction of the best, worst, and most likely scenario for recovery to inform the best interests decision. (Section 5.1)
To assist with decision-making, you convene a formal best interests meeting, involving the healthcare team who have been caring for Ms V, and also her partner, close family members and Ms V’s best friend. You and the PDOC specialist provide clinical information about Ms V’s condition, including that you still do not know the full extent of her potential for recovery, and that it is possible she may make some further improvement.
You explain that, although it will be impossible to say with certainty exactly what that improvement will look like, the specialist evaluation will more provide more information about her level of awareness and potential for future recovery. Whilst encouraging a discussion about the patient and what her views are likely to be, you advise that it would be best to wait until all of this information is available before a decision is made.
Best interests meetings are not a requirement of the Mental Capacity Act 2005, but it is good practice to convene more formal best interests meetings where a decision will have serious consequences for the patient. These should involve all those who will be able to contribute to decision-making. (Appendix 1)
Part of the discussion between the healthcare team and those close to the patient should include an honest but sensitive discussion of the fact that it is impossible to predict with absolute certainty how anyone will respond to treatment and what level of recovery can be expected. It can be useful for doctors to speak in terms of the best, worst, and most likely scenarios in terms of recovery for the patient. (Section 2.5)
In some cases there will be clear evidence that the “best case scenario” in terms of recovery will not provide a quality of life that the patient would find acceptable. In these circumstances, it would not be in the patient’s best interests to continue to receive CANH until that level of recovery has been achieved and all possible clinical assessments have been carried out. (Section 5.2)
Similarly, where a patient has been in PDOC for some time and has stabilised, the situation will become clearer and the likely level of recovery can be predicted with more certainty. At this point, a shorter and more detailed assessment may be more appropriate (Sectin 5.1).
Ms V’s parents and her partner and her best friend reiterate what they have already told you about what they think Ms V’s view of her current situation would be. You also hear from some of the carers and therapists who have looked after Ms V for the two months she has been on the ward. They say that she does not appear to be distressed and that she seems to enjoy some things, such as people talking to her or listening to her favourite music. Ms V’s partner disagrees, and is worried that Ms V is all too aware of her current situation – she says that when she played Ms V one of their favourite songs, she saw her become agitated.
You should seek to hear from other members of the care team who have been involved in caring for the patient. In particular, they may be able to share their perceptions of the patient’s current positive and negative experiences. This, plus all of the information and evidence provided about the patient’s wishes, beliefs, feelings and values, should be carefully assessed in relation to the most realistic prognostic evidence available. (Appendix 1)
Ms V’s parents become emotional during the meeting when the issue of withdrawal is raised. They are horrified by the prospect of “starving her to death”.
It is important to provide honest information about what withdrawal of CANH will look like, and what patients’ families should expect. It is particularly important to set out a detailed plan for withdrawal and end-of-life care, and it can be helpful to involve specialist palliative care colleagues in this discussion. This should include explaining how pain and other symptoms will be managed. (Section 2.10)
It is impossible to be absolutely sure what, if anything, patients experience during the withdrawal of CANH, but we do not think that patients feel hunger or thirst. However, medication and mouthcare is provided just in case, so we can be sure they are not experiencing any symptoms or distress. Interviews with families, conducted by the Coma and Disorders of Consciousness Research Centre, after CANH has been withdrawn, indicate that patients’ deaths appear “peaceful”.
It is clear from this meeting that the relationship between Ms V’s parents and Ms V’s partner is extremely strained, and that they are unlikely to agree with each other. You arrange another meeting, with an independent chair, and you subsequently involve a mediation service in the process. It is clear that agreement as to what is in Ms V’s interests will not be reached as long as Ms V’s parents and her partner are in dispute. You seek legal advice from your Trust solicitor who advises that the Trust will need to initiate an application to the Court of Protection to determine whether continuing CANH is in Ms V’s best interests.
Where there is any uncertainty or disagreement about the patient’s best interests, this should be addressed promptly. It can be helpful to seek a second opinion, hold a case conference or, where available, involve local mediation services. If these options fail to resolve the issue, you should seek legal advice to decide whether an application to the Court of Protection is necessary. (Section 2.9)