Module 3: Best Interests
3.6 A test scenario
Below you will be taken through an exercise to practice applying your knowledge in a scenario. If you work for an organisation that has commissioned live seminars alongside this online learning, then this is one of the exercises we’ll use in the group session. In any case, try working through this exercise as an individual or, even better, with your team.
Continuing Professional Development
- Read the scenario and make some notes in answer to each of the questions that follow – ideally do this in discussion with colleagues
- You may want to check back through earlier units to inform your answer or look at this one page BMA infographic to help
- Once you are satisfied with your own responses, then look at the answers we suggest and compare for any differences, gaps or additions.
The Scenario
A 28 year old patient, Peter, was seriously brain injured in a ski-ing accident. He is probably vegetative or maybe minimally conscious (no recent testing has been done).
He is DNACPR and not for return to intensive care. These decisions were made when he was admitted to the care home nearly three years ago. The most recent decision about CANH was when the PEG was fitted. The decision is recorded on a form headed “Best Interests” as “Patient unable to swallow; mother gives consent; understands patient will be more comfortable with PEG than NG”.
His mother and one of his two sisters visits regularly. One of his sisters says to you that Peter “would rather be dead” than kept alive like this. She says “Mum will never agree to stopping treatment because she’s hoping for a miracle but I know he wouldn’t want this”.
Q1: Does there need to be a best interest review of P's treatment?
Is a review necessary? Why? Can you spot any problems with the record of how decision were originally made? Which decisions should be reviewed?
A1: Our answer (only click here after making your own notes)
There should definitely be best interests assessments of all of the treatments the patient is receiving, including CANH, medications and therapies. The decision that Peter is not for resuscitation and not for return to intensive care should also be reviewed.
Decisions need to be regularly reviewed and updated because a decision that was right for the patient at one point in time is not necessarily right for the patient some months or years later. Professional Guidance about CANH says that these decisions should be reviewed at least once a year (more often if necessary).
The patient’s clinical situation changes over time (eg in this case has Peter moved from VS to MCS? or is it now clearer than ever that he is in PVS?). There can also be new or different information from family members (eg in this case the statement from the sister, and, in any case, family members’ views about what the patient may want often shift over time as they get a clearer sense of the patient’s condition and prognosis).
There are also glaring problems with the existing record of decision-making. A best interests decision needs to give weight to the patient’s own wishes and what he would decide for himself if he were able. The so-called ‘best interests’ decision made three years ago does not refer to the patient’s own views at all. It also incorrectly states that his mother ‘gave consent’ to the PEG: as you know, next of kin are not legally entitled to consent to treatment on behalf of an incapacitated adult. It seems that the initial decision to fit a PEG was not made in compliance with the MCA’s requirements for best interests decision-making and that family members may have been misinformed about their own role. But even if the decision had been made correctly three years ago, a review is overdue.
Note: do NOT delay initiating a best interests meeting just because you think more information might be needed about diagnosis or prognosis (thought you could take action to seek this information in parallel if you think it will be helpful). In the best interest meeting the patient’s family/friends can be asked about what quality of life would be acceptable to the patient (being specific about the sort of things this means). There can also be a discussion about what is currently know about the best-case scenario likely. This discussion will then inform best interest decisions about whether, and how much, fine tuning of the diagnosis/prognosis is necessary.
Q2: Who should initiate the process of a best interests review?
If a review is necessary who should initiate it? You? The sister? The key worker? The GP? The patient’s consultant?
A2: Our answer (only click here AFTER making your own notes)
You should initiate the start of the process. The patient’s sister spoke to you and gave you information about what the patient might have decided for himself in this situation. In any case, whether or not she had spoken to you, it is obvious that a review of the patient’s best interests is overdue in relation to all the decisions that have been made about life-sustaining treatment. You may not be the lead decision-maker and may feel it is not your role, but every healthcare professional is charged with being part of the process that ensures a patient is being treated in their best interests. (And it should certainly NOT be left up to family members to do this!).
You should alert the relevant person to the fact that a review of best interests decisions is needed and that you have relevant information from the sister about the patient’s wishes. The relevant person will usually be the GP or Consultant with overall responsibility for the patient’s care. (If you are anxious about approaching this person directly, you might want to consider talking to other members of the MDT or the patient’s key worker first.)
Q3: What are the challenges in getting an assessment about whether CANH is in the patient's best interests? How could they be overcome?
Think about what would need doing to get this assessment, and an action plan to ensure this happens, including anticipating any obstacles or delays.
A3: Our answer (only click here AFTER making your own notes)
The person leading the best interests review will need to assemble information (including both up-to-date clinical information and information from consultation with those who care about the patient and are interested in his welfare – one person to consider consulting, for example, is the second sister). For a review of CANH the proper process needs to be followed involving a second opinion (Details of this are spelt out in the BMA guidelines).
There are lots of challenges though even before getting to this point! It can be hard to be the person initiating the assessment. It’s common to find that nobody is willing to accept the role of “the decision-maker”. Nobody owns this process. It can be simply assumed that CANH is in the patient’s best interests because without it he would die.
Also some staff may have conscientious objections to discontinuing treatment and rather than declare this and withdraw from the best interests process may actively obstruct the process (eg by failing to hand over responsibility to someone else).
Hierarchies and levels of expertise (and simply having the time to do the necessary work) can also get in the way. Sometimes GPs feel that because a decision was previously made by a Consultant to insert a feeding tube, it is not up to them to consider withdrawing it. There may be a view that it’s too difficult to raise the subject of whether or not CANH is in the patient’s best interests because the family are (reportedly) not in agreement.
You will probably have other observations of challenges in your own setting. We hope that you have ideas about how these challenges can be overcome. We strongly recommend engaging with the detailed professional guidance about CANH produced by the British Medical Association and Royal College of Physicians and endorsed by the General Medical Council. This will help everyone to understand the process. It is available on the BMA website www.BMA.org.uk. There are infographics and flowcharts you can put up on noticeboards and use to inform team discussion, and podcasts you can use to enhance your own understanding.
You’ve now completed the third module. Congratulations.
