Background

Overview

In the UK, only the patient can make healthcare decisions if they have capacity. You may encounter stations where a relative discusses a decision made by another relative. These discussions require tact and care to preserve confidentiality, as you may not know if the patient is comfortable with this being discussed. Avoid disclosing sensitive information and build upon what the relative already knows.

Patients with capacity are given information about an intervention that is of overall benefit to the patient, including its benefits, risks, complications, and the choice of no treatment. The patient weighs up these factors and decides if they would accept any of the options, including no treatment. Provided they have capacity, their wishes must be respected, even if the reasons for doing so may seem unwise.

A patient may ask for recommendations, and this may be appropriate if the clinician feels it would be beneficial, however, they should not be coerced into making a choice.

As always, capacity is decision-specific and is always assessed separately for each decision when needed. Lacking capacity in one area does not mean the patient with lack it in another.

OSCE Tips and Scenarios

Possible scenarios

Some scenarios include:

• Relatives disagree with a person with capacity declining/accepting treatment.
• Parents disagree with a person with Gillick competency making a decision about contraceptives.

Tips for the station

Never make assumptions: having dementia or any other condition that could predispose to lacking capacity does not mean they lack capacity. You must assess capacity each time for every decision, as it is decision-specific.

Check for breaches of confidentiality: where possible, always ensure that you have checked for any evidence of the patient stating that discussions with family, friends etc. would be against their wishes. In OSCE stations, the instructions will state whether such wishes have been expressed.

Be clear about serious complications and death, don’t beat around the bush: you must actively explore their understanding of serious and life-threatening risks including death. During the station, these phrases, including saying ‘death’ outright, must be said. Being unclear about this may instantly fail you. Discussing death can be awkward or difficult to articulate nicely, however, it is something that must be discussed.

Know what you would do next and the limits of your competence: don’t offer something you are not able to do, and when discussing the next steps, always remember whether you need to discuss this with a senior or another team.

Mistakes people make

Some mistakes made include:

• Not exploring their perspectives: failing to explore the background leading up to now, their viewpoints and concerns, and not acknowledging these.
• Not exploring expectations and negotiating: failing to explore their expectations and preferences, and failing to negotiate and suggest a plan of action.
• Lack of clear consultation closure: failing to conclude the consultation with a clear plan moving forward and leaving them uncertain about the next steps.
• Monologuing and/or jargon: engaging in one-sided communication rather than facilitating dialogue and discussion with understandable language.
• Inadequate responses to questions: struggling to confidently and accurately questions that arise and failing to address concerns, leading to confusion and dissatisfaction.
• Failing to mention death: explaining that a possible decision carries the risk of death can be tricky, however, it is essential the patient understands this risk in scenarios where it may be a possibility and must be said. Do not paraphrase this (e.g. ‘pass away’) and be clear, using the word ‘death’.
• A lack of knowledge and an over-reliance on seniors and leaflets: depending excessively on senior advice or leaflets to compensate for knowledge gaps and underestimating their responsibility in patient care.
• Not understanding professional limits: offering to perform tasks beyond their grade level and not knowing the limits of their competence.

Key Communication Skills

Explaining

Maintain confidentiality: only work with what the relative knows and what they say and avoid sharing any further information unless you are certain that the patient is fine with this. If they push you, explain the principles of confidentiality and the law.

Never launch into explaining straight away: keep things patient-centred and use ideas, concerns, and expectations (ICE) throughout. Try to avoid collecting them all at the start and instead, ask about them and address them as they arise.

Chunk and check understanding: after each segment of information, ask if they understand, such as by asking “Does that make sense?” and “Is there anything else you’d like to ask about that part?”.

Avoid all medical jargon – explain everything in words that the general public would understand (e.g. saying an ‘underactive thyroid’ instead of ‘hypothyroidism’).

Be honest, clear, and sensitive, and never beat around the bush: everything the patient needs to know must be said, however, this should be done sensitively. This includes explaining the risks of serious or life-threatening complications and death and actively saying these words.

Empathy

Empathise appropriately and put a positive spin where possible: reflect the patient’s emotions and give reassurance, but do not give false reassurance or promise something you can’t guarantee. Also, reassure the patient that you’ll try your best to help them. For example, if a patient says they are worried about their diagnosis, you could say “It is natural to be worried about a new diagnosis, but we are here to help and address any concerns you might have”.

Acknowledge their feelings but avoid collusion: for example, if a patient is angry towards a colleague, you could say “I can how this situation can make you feel that way”. Avoid taking sides.

Consider the need for a breaking bad news approach: always explore the events leading up to the current situation to gauge what the patient knows and has experienced before explaining anything. For example, a patient has had a series of tests for possible cancer and is anxious about the result but does not know why they were given the tests.

Potential Ideas, Concerns, and Expectations

Some ideas, concerns, and expectations include:

• “Can’t you just do it anyway?”
• “But they have dementia, surely they can’t make that decision?”
• “Can I have a second opinion?”
• “What are the alternative options?”
• “What happens if I say no?”
• “Why don’t I have the right to make the decision for them? I’m their son/daughter.”
• “I am worried about them being in pain”.
• “I am worried about them not sleeping properly”.
• “So you’re not doing anything to treat them?”
• “What stops me from taking them home?”
• “Why is something so drastic being done?”
• “What happens if this is not done?”

Approach

Introduction

• Wash hands and introduce yourself: your full name and role.
• Confirm their identity and if they are the nominated next of kin: their full name, relation to the patient, and preferred name.
• Explain the purpose of the conversation and gain consent: “I’ve been told would like to discuss X’s care today, is that correct?”

Background

Explore their background and understanding:

• Events leading up to now: what has happened so far?
• Their current feelings: how are they feeling now?

Explore their understanding and ICE:

• Understanding: what is their understanding of what is going on?
• Ideas and concerns: is there anything they are worried about?
• Expectations: what would they like from this consultation?
• Confirm the direction of the conversation: “So you would like to discuss the care of your father. Is that alright?”

Explanation and discussion

Capacity assessments

You may need to explain how capacity is assessed. Remember to tailor this according to ICE and their understanding:

• Understanding: we check if patients can understand information regarding the decision. This includes its risks, benefits, complications the risks of not going through with the decision, and alternatives. We also make sure to try every method possible to help with understanding, such as visual aids, interpreters, writing things down etc.
• Retention: we check if patients can hold on to this information long enough to make a decision and help them if needed, such as by writing things down, video recordings etc.
• Weighing up pros and cons: we check if the patient can weigh up the pros and cons before making a decision.
• Communicating the decision: we check if the patient can communicate this decision.
• Repeating back: we make them repeat each of these back to us in their own words to check their understanding.
• Checking for mental state problems: we also check for anything that might influence their decision, such as dementia.
• If they have capacity, the decision is respected: if after discussing these, the patient says yes or no, we have to respect this decision. They have the right to do so, even if people think it might be unwise.

Perspective after discussion

Explore their perspective after discussion:

• Current thoughts: what do they think now? Do they still disagree?
• Explore why they disagree: is there still something that needs explaining?
• Acknowledge how they feel, but don’t take sides: “I can imagine this may be difficult as it does not match what you would’ve hoped for them to do”.

Negotiation and problem resolution

The relative may still disagree. Some steps to consider include the following:

• Explain the law: we cannot do something against a person’s will if they have capacity. An example of where capacity would not be necessary would be if it was a life-threatening scenario and they were unconscious and waiting for them to make a decision is not feasible. The law states that a decision cannot be made on a competent person’s behalf.
• Be firm but sensitive: ultimately this needs discussing with the patient present as the law states that no one else can make a decision on their behalf.
• Ask how they would feel if it were them: “If you were in a similar situation and you did not want treatment, how would you feel if it was given to you against your will?”
• Explain that capacity is decision-dependent: in some scenarios, the relative may mention that the patient has a condition that could impair capacity (e.g. dementia). Explain that capacity is always checked separately for each decision where needed. Lacking capacity for one decision does not mean that the patient will lack it for another.
• If relevant, explain that you cannot share any information: without the patient’s permission, we cannot share any more information that the patient hasn’t told them. However, we can still listen to their concerns and address them as best as possible without sharing information without consent. Confidentiality is only broken if the patient is a danger to themselves or others. Even then, this may not be to the relative and instead, the police or a colleague.
• If asked to, you cannot treat the patient without their consent.
• If they ask about any interventions: this can only be done if the patient consents to them discussing it on their behalf. You can explain this in a general sense, but make it clear that you are not disclosing whether the patient is undergoing this or not (unless the relative already knows).

Problem resolution

Propose some simple solutions:

• Offer to meet together and discuss: you could try arranging an appointment with the relative and patient together to discuss this, however, this can only be done with the patient’s consent, and they may still insist on the same decision.
• Reassure if possible: For example, if they are worried about pain and the patient has declined treatment, reassure them that the team will offer pain relief (unless they decline that too). Do not give false reassurance, make any promises, or offer something you cannot give.

Summary and concluding

Summarise and clarify what has been discussed:

• Confirm what has been said: “So to summarise, you would like to have an appointment with the consultant in charge to discuss this?”.
• Reassure: that the patient will still be given as much support as possible

Check understanding and ICE:

• ICE: has this been addressed/acknowledged?
• Invite them to ask questions: do they have any?

When finishing:

• Senior discussion: inform them that you will have to discuss this with a senior first.
• Offer leaflets, early follow-up, and a future contact: such as yourself or another relevant team member.
• Thank the patient and document the discussion.