CARE AT THE END OF LIFE: A guide to best practice, discussion and decision-making in and around critical care
CHAPTER 3: Communication, Confusion and Conflict
Key Points
- End of life considerations on critical care can lead to strained relationships between clinicians, patients and families.
- Poor communication and perceived lack of empathy are the main reasons for conflict.
- Sufficient time for effective communication should be planned for.
- Mediation (from within the hospital and external) can help minimise conflict.
- Recourse to legal intervention (usually via the Court of Protection) may occur when an impasse has arisen
Recommendations
- Avoiding firm predictions (positive or negative) can minimise conflict.
- Honesty and empathy in communications are essential.
- Clear, contemporaneous documentation can aid future discussions.
- Use of key phrases can assist in conveying uncertainty and build understanding between critical care teams, patients and families.
- Learning from previous case examples can help staff deal with new cases and dilemmas and should be incorporated into local clinical governance structures.
3.1 Understanding conflict, confusion and communication
Confusion and limited communications about withdrawal or withholding treatments is one of the main causes of both perceived and actual conflict (Azoulay et al., 2009). This can be between ICU teams and families, between different clinical teams or within the same clinical team. Clear, honest communication from the point of admission onwards can help minimise disputes. In most circumstances conflict can be resolved by sensitive negotiations, good listening, timely second opinions and other expert opinions. Religious and other external support can also be invaluable if the conflict is between families and clinical teams. It is essential that teams move away from a paternalistic approach and take into consideration the opinions of what families consider the best interests / wishes of the patient would be (Macfarlane et al., 2018).
If difficulties persist a more structured approach becomes necessary with the likely involvement of hospital legal and management teams (Turnbull et al., 2019). Discussions should focus on attempts to lay out plans that families and clinical teams can agree on. Meetings should be clearly documented in case notes and minuted (recording of verbatim comments rather than interpretations of what has been said). Copies should be available to all.
Nevertheless, occasions will still arise where communications completely breakdown with polarised viewpoints about best interests. At such junctures applications may be made to the Court of Protection. This is a long, drawn-out process that may destroy relationships between the parties. It is expensive and takes clinicians away from clinical roles for significant periods of time. For example, the recent paediatric intensive care case of Charlie Gard took 11-months to resolve, being finally rejected at the European Court of Human Rights (EHCR). After the court case clinicians were back at the bedside having to implement that decision in the presence of the child’s family (Mayor, 2017). Inevitably such processes create significant amounts of moral distress for all concerned (Henrich et al., 2017).
Conversely, the use of mediation is a flexible, cost-effective process where a neutral thirdparty (mediator) facilitates discussions and negotiations. The process remains with the parties and if a conclusion can be reached, the implementation is faster and has ‘buy-in’ from everyone. This greatly reduces the possibility of a post-hoc review (coronial investigation or clinical negligence litigation) where a “forced decision” may have been perceived to have occurred. Accessing mediators is straight forward: NHS Resolution has two approved panels of mediators that can help (Trust Mediation and Centre for Effective Dispute Resolution). The Faculty of Intensive Care Medicine also has a small database of medical mediators and the Medical Mediation Foundation is a not-for-profit organisation specialising in medical mediation.
Even if critical care clinicians have no direct involvement in a case they may be invited to act as expert witnesses. In such circumstances the judge may invite expert witnesses to provide evidence. If called upon to fulfil such roles clinicians must be aware of and declare any potential conflict of interests (General Medical Council, 2019). Conflicts could be financial, professional or personal. Lack of consideration of conflicts of interest can cloud judgement, potentially result in the wrong outcome for patients and create loss of trust between clinical teams and families resulting in significant reputational damage. It is therefore the professional responsibility of clinicians to maintain high standards of probity by declaring such conflicts (General Medical Council, 2019).
3.2 Useful Phrases
Useful Phrases
A Consultant in ICM was asked to review a frail 82 year-old-patient with chest sepsis who had been in hospital for 10-days after a urinary tract infection. They were hypotensive with an acute kidney injury but continued to have capacity. “Hello, my name is……. I’m one of the critical care doctors and I’ve been asked to see you because the doctors and nurses on the ward have noticed that your blood pressure has fallen.” “What’s your understanding about what’s been happening?” “How do you feel about that and how have you been over the last few months/years?” “What do you think might happen if your condition worsens again/further? How do you feel about that?”
Talking to the families of patients who are continuing to deteriorate despite escalating ventilatory, cardiovascular and renal support.
“I’m sorry as a stranger to have to talk to you at a time like this, but it’s very important that I explain about what is happening to (insert name.) But before I do, have you any queries of your own?”
“I’ve consulted with my colleagues and it’s clear that everything we’ve done and are doing is no longer capable of saving their life. She is now dying.”
“A lot of the things we do to save a patient’s life can potentially be unpleasant for the patient. We’re very conscious that if we keep doing them to a dying patient, we could be committing a great indignity/unpleasantness towards them.”
“Our intention now is to do everything we can to ensure (patient’s name) is free from pain and distress and focus on comfort. We may not be able to remove all the tubes and machines as this in itself may sometimes cause discomfort, but we will review as we go along.”
“We can’t predict an exact time of death but in these circumstances patients who are like (insert patient’s name) are likely to die within the next 24-48 hours.”