By Kathryn Mannix, 31st August 2021
A recent blog post by Celia Kitzinger is a great review of a court hearing and the problems lying behind it, and it’s made me reflect on our attention biases.
It is, of course, a breach of guidelines if review dates for treatments and/or decisions pass without the required review taking place.
Technically, a decision might be supposed to have lapsed if it exceeds its ‘review-by’ date, but because cessation of treatments (or safeguards) should not take place without a review, the effect of a missed review is usually, simply, to carry on as before. It is commission by default.
What of missing the review of a ReSPECT form or a Do Not Attempt Resuscitation (DNACPR) decision? The vulnerability here is that, if the decision is deemed to have lapsed, then CPR might now be administered should the person collapse, not because the grounds for not proceeding have changed, but simply because of the failure to review the decision. Conversely, if the response to a missed review date is to carry on with the same decision, then if circumstances have changed that make CPR a desirable intervention when before it was not, carrying on beyond the review date risks omission by default of a now desirable treatment.
I wonder what checks and balances we can put in place to ensure that the case managers, care home managers, District Nurses, GPs, ward managers, or consultants nominally ‘in charge’ of a patient’s care do carry out reviews of these decisions using a best interests approach if P lacks capacity.
How can we enable people with Power of Attorney to receive a list of all decisions applying to P, with their review dates, so they can advocate for review and participate in the best interests process, especially as, in some cases, the person with Power of Attorney is (or should be) the Decision Maker?
Listing and reviewing treatments, decisions and prescriptions
In fact, simply making that list with dates of all the decisions needed for all patients would be a great start.
These things pass hidden in plain sight: care handovers and discharge summaries should include a list of all decisions and prescriptions in place, with their individual review dates.
After many years as a hospital doctor in palliative care, I understand how this gets missed.
After and during the course of an initial acute event, life-saving treatments are given (if not forbidden by an advance decision to refuse treatment) while the team assesses the impact of the illness or trauma, in the hope of good recovery. The best interests decision is often invisible at this stage: trying to save a life is assumed to be the right thing to do and nobody notices that, in effect, one or several best interests decisions have been made.
So now P has perhaps a naso-gastric tube or PEG; a central iv feeding line; a tracheostomy tube attached to a ventilator. These become ‘the new normal’ and there is an attention bias that assumes continuation of that norm.
Because withdrawal of a ventilator is so obviously potentially life-threatening, discussions of withdrawal usually trigger an appropriate best interests process. But it’s possible to move P’s care from ICU to ward, from ward to rehab, from rehab to long-term care or home, without re-examining clinically assisted nutrition or hydration, and so P’s treatment continues without re-examination. There is an attention bias that goes unnoticed and unchallenged.
I’ve often thought that clinically assisted nutrition and hydration should be subject to far more frequent review over its first few months, before it becomes accepted as ‘the new normal’ with associated attention bias towards continuing: at 48h; 1 week; 4 weeks; 3 months; 6 months. Each is an opportunity to review progress and to help loved ones to consider P’s known wishes and discuss them with the clinical team. At each best interests-based review point, the whole team and P’s loved ones can consider P’s quality of life as improvement/rehabilitation progresses or fails to progress.
An expectation of regular review and best interests discussions between care team and P’s advocates, attorney(s) or family would prompt examination of all aspects of the decision, and so reduce susceptibility to an invisible attention bias. Those discussions would also encourage the question that P’s father finally raised in this case: is clinically assisted nutrition and hydration in P’s best interests – allowing it to arise in a far more natural way, without seeming to be nihilistic or death-seeking, and without relying on family to raise it.
The Big Picture
Judges in the Court of Protection need to be aware of the Big Picture, both legally and medically, for the people who come before them. The Big Picture includes knowledge and understanding of guidelines for medico-legal decisions that require the attention of a higher court, lest those issues are overlooked when they should be noted and referred upwards. An attention bias towards ‘what we deal with here’ can overlook other aspects of a patient’s situation. That seems to have happened in this case.
The Big Picture a judge must be aware of also includes an understanding of medical decision-making that takes place not in the contemplative atmosphere of a courtroom but in the urgent hubbub of an Emergency Department, a Stroke Unit or other place of urgent care.
Urgent life-preserving decisions merit reconsideration as time passes, and judges need to understand how medical attention bias arises not as a personal failure of individual clinicians but rather as a human systems error.
Perhaps, as part of their training for their role, judges might benefit from joining us on ward rounds and spending shifts with us in the Emergency Department. It would be a fascinating exchange of insights to have a judge join us during best interests meetings when we are grasping for the most suitable decision for a person lacking capacity to decide for themselves, and whose loved ones may be engaged in the process or, alternatively, may be struggling to allow a decision to be made in a manner compliant with the Mental Capacity Act.
Joining us in the world of medical decision-making might be of huge benefit to judges who need to understand the process P and family, and clinical teams, have been through. It would help them to help us all, as we seek to maintain an overview of the care, protection, freedoms and treatments of people whose rights require our protection and diligence.
Kathryn Mannix is a retired palliative care physician. She campaigns to raise public understanding of the process of human dying and to encourage people to plan ahead, with their loved ones and medical advisers, to ensure their care and treatment aligns with their values and wishes. Her book about the way people live while they are dying, With the End in Mind, is a Sunday Times best-seller and was short-listed for the Wellcome Book Prize. Her book about navigating important conversations, Listen, will be published in mid-September 2021. She tweets as @drkathrynmannix