Shared decisions must be at the heart of the consent process

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Dr Chris Hammond from Leeds, UK

The procedure was performed to treat an ulcer, and it slowly improved, but it still hasn’t healed completely. The patient tells me that his previous procedures were appalling: painful, long and frightening. He’s clearly anxious about having another one, and yet he’s ready to do it all over again.

The patient is here because a follow-up ultrasound showed stenosis of the stents. The protocol was started, an angioplasty was booked, a pre-evaluation took place and arrangements were made. We go through the consent process together. He signs the form, we transport him to the angio room and off we go.

Thinking about my patient’s interaction with this small part of his care, what strikes me is how much the process deprives him of his rights: his role seems passive in the face of an inevitable and growing momentum that takes him away. leads to monitoring and from there to subsequent angiography.

Aside from the uncertainties involved (Does he need angioplasty? What if nothing is done?), It is unclear what opportunity there has been to explore his hopes and his expectations for this treatment. Why did we call him here? What does he want? What do we want? Are they the same things? Even the language used (“consent”) creates a feeling of passivity. It implies that something is done to the patient, not done with him.

Growing complexity

Healthcare decision making is becoming increasingly complicated due to an aging and co-morbid population, the management of imaging results with an unknown natural history, and a multitude of technological treatment options. competing with different risk and benefit profiles over time and for different patient cohorts. Add to this the substantial uncertainties in the evidence for each of them.

In the face of these changes, it seems essential that patients have the opportunity to consider their options and – perhaps more importantly – to reflect on their broader preferences and how they might weigh their treatment options in the context of these. It is delicate, time consuming and sometimes uncomfortable for everyone to accompany patients, especially if the discussions are about the nature of the risk or the inevitability of a limited lifespan.

The UK General Medical Council’s guidelines on consent emphasize information sharing, but it also emphasizes the importance of dialogue and (essentially) finding out what matters to patients, their “wants and fears. … and their needs, values ​​and priorities. “The Montgomery Judgment 2015 created a legal precedent effectively requiring such a dialogue. Clinicians are notoriously poor in this area, and patient surveys often identify information gaps, misunderstandings, and assumptions – by both patients and clinicians – about the motivations and drivers of care. In retrospect, it is not uncommon for patients to regret their decisions.

Additionally, as the complexity of treatment increases, an individual’s health care is divided among teams of specialized technicians, each with their own area of ​​expertise. Treatment pathways become “protocolized” and a patient’s relationship shifts from a relationship with an individual to a relationship with an organization.

When a patient sees different professionals at each stage of their care journey, there are few opportunities for the development of rapport and the confidence that gives them the freedom to express their preferences and to question the assumptions that arise. underpin its care. Each individual interaction adds momentum towards a predetermined outcome that they might not want. Paradoxically, as the complexity of decision making increases, the opportunity for dialogue exploring decision making decreases.

What could we do differently?

Decision support tools are being explored to help patients navigate the complexities of high-risk surgical decision-making. In the meantime, I am struck by a personal analogy about a complicated decision I had to make recently. Many conceptual issues when making an investment decision are similar to those posed by patients about healthcare: the trade-off between short-term and long-term outcomes, the nature and magnitude of the ‘uncertainty in these and the use of an expert complicated data and communicate them in a meaningful way and the willingness to delegate part of the decision-making.

But what was very different about my decision making is what my financial advisor and I did before we started talking about specific investments. We spent a lot of time evaluating my attitude towards risk, my perspective on ethical or green investments, the time frame on which the investment was required, and the context of investing in my other priorities. It was only then that we moved on to the discussion of potential investment vehicles.

I ended up accepting the adviser’s recommendation. I am not sure I fully understand all the details. I certainly couldn’t quote the numbers. But I’m sure I trust my advisor’s recommendation knowing he knows my prospects.

There are similar (albeit limited) models in healthcare. The UK Resuscitation Council’s Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) and the US Physician Orders for Life Sustaining Treatments (POLST) processes encourage patients and clinicians to discuss their personal care priorities and management options for emergencies towards the end of life (frequently, but not exclusively, i.e. cardiopulmonary resuscitation [CPR]) in the event of cardiac arrest or other treatment limits such as transfer to an intensive care unit.

These conversations are difficult to have, but their importance lies not only in the outcome, but also in the process itself which explicitly demonstrates that patients retain their free will and that healthcare organizations recognize and care for it. appreciate.

Can we adopt similar models of consent more widely? Perhaps. We need to develop practical techniques and questions that explore broader perspectives with patients. However, the basic prerequisite is that we are curious about what our patients want and on their terms, not ours. We must offer them the time, space and support to help them express these desires, and we must listen to them, understand them and take them into account before negotiating a decision.

Emphasizing consent as a technical exercise in sharing information is a narrow and meager understanding. Ideally, consent is an exploration of the patient’s values ​​and priorities, and then a contextualization of the therapeutic choices offered in light of those priorities. Unfortunately, this is often logistically impossible.

My patient’s angioplasty was quick, technically successful, and apparently painless. I put him back in surveillance. Is this what he wanted? I do not know. I’m sorry to say, I didn’t ask.

Dr Chris Hammond is Consultant in Vascular Radiology and Clinical Manager of Interventional Radiology at Leeds Teaching Hospitals NHS Trust, Leeds, UK

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