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The Ethical Care Decision-Making Record – a cautiously optimistic response

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The Royal College of Physicians (RCP), together with the General Medical Council (GMC), have just released a new resource; the Ethical Care Decision-Making Record (ECDMR), which aims ‘to help clinicians, patients and their families or carers make decisions together about the levels of care that will be provided when a clinical decision is required.

People are not robots, where if something goes wrong, there is a simple binary decision to make; repair or throw away. The human body is complex, and each one is unique. People will respond in individualistic ways to the same physiological insult.

Therefore, it follows that if no two people are the same, it is impossible to directly transfer a decision for the management of one person to another without some slight modification.

Healthcare is a complex system dealing with people with complex problems that may fluctuate on a daily or hourly basis. Difficult decisions must be made (eg to escalate treatment or to stop), at times fairly quickly, without full background knowledge.

Discussions and decision making about the care of a patient may complex or may be straightforward. They may also be difficult, such as those when discussing the ceiling of care, the need for cardiopulmonary resuscitation, admission to ITU and when to consider end-of-life care, or when resources are limited.

Discussions will be influenced by culture, past experiences, societal expectations, faith and resource availability. Expectations may be unreasonable or unattainable. An intervention’s availability does not always mean it is appropriate, and explaining this, where denial of care may be at the forefront of others’ minds, can be very difficult. The recall of discussions is never 100 per cent. The individual’s or family’s recollection of what was said may frequently be different from that of the medical team.

This new resource is intended to help ensure that what is agreed between patients, their families and their medical teams is recorded to iron out some of the foreseeable ‘bumps in the road’.

On the face of it, the guidance appears to be appropriate, and there is much to commend it. The basis is that of distributive justice, ie the decision-making process needs to be just (transparent, equitable and fair) and result in minimal harm to the patient.

Documentation in medicine is key, and the ECDMR’s main purpose is to provide a structured format to facilitate discussion and documentation. The RCP recognises that the documentation is not appropriate for all circumstances and accepts it may require local adaptation.

The ECDMR is based on six principles: Respect; Duty of Care; Equity of Care; Accountability; Transparency, and Reasonableness. The document then suggests a four-question (4Q) approach of Indications which includes patient preferences, quality of life, and context. The guidance or documentation does not offer advice on how to decide on access to care if the expected care is not available or suggest how to portray this to family members.

However, the document then provides suggested prognostic scoring systems to assist in the decision-making process. However, it fails to note that these have no credibility or validity in assessing admission to ITU or where someone is old or at the extreme of illness.

On balance, the guidance appears to push towards the risk of mortality being an exclusion factor for the level of care. However, the literature suggests that disease burden and a previous low-performance score or the presence of frailty are better predictors of outcome. The guidance does not mention these factors, raising the concern that the drift will be towards denying older people the right to treatment based purely on age and not disease severity or premorbid function.

As Christians, we have some clear priorities. We know that God expects his people to protect the vulnerable and disadvantaged. As Christian doctors, we must remember that the patient before us, the person we are discussing, is a unique individual, created in the image of God, with their own intrinsic dignity and value, irrespective of their premorbid cognitive or physical functional ability. We must bear this in mind when applying ECDMR in practice. As the Psalmist reminds us, ‘Blessed is he who has regard for the weak.‘ (Psalm 41:1)

Documentation is key to good care. If a conversation is not documented, it may as well not have happened. Emergency teams will be called to review people in the emergency room, ward, or ICU. When someone has been in hospital for some time, knowing the original clinical decision thought process could help.

Having a structured format for recording family discussions is a good idea and should be welcomed. However, with many medical systems moving to an electronic record, it is questionable how this form would be integrated into commercial software.

The guidance that is provided to assist in completing the document may have the unintended consequences of limiting access of older people to more intensive medical support. As the RCP is looking for feedback from medical staff to help improve the ECDMR going forward, I would encourage doctors and other multidisciplinary team members to ensure that any concerns or shortcomings about the documentation or guidance are brought to the College’s attention swiftly.

 

David Smithard is a Consultant in Geriatric Medicine at Lewisham and Greenwich NHS Trust and a Visiting Professor at the University of Greenwich

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