Background

Overview

Disagreements between medical teams and patient relatives regarding an intervention, or lack thereof, in their best interests are common. Listening to and valuing their insights is crucial, as they will know the patient better. However, this must be balanced with the team’s responsibility toward the patient.

In the UK, no one can make a decision on behalf of a person with capacity. For people lacking capacity, extensive measures are taken to facilitate decision-making (such as recordings, visual aids, interpreters, writing things down etc.). In some cases, capacity loss may be temporary or fluctuate, and it may be possible to wait until it returns.

Capacity is decision-specific and it is always assessed separately for each decision. Lacking capacity in one area does not imply a lack of it elsewhere.

Best interests – who makes the decision?

Decisions for people lacking capacity are made by a senior, usually thepatient’sresponsible consultant, in the patient’s best interests. Any decision made in a person’s best interests should be the least restrictive option and some factors that should be taken into account when making these decisions include:

• Legal representatives: do they have a Lasting Power of Attorney (LPA) in health or an Advance Decision?
• Past and present wishes: have they mentioned anything in the past about similar situations?
• Input from close people: what are the opinions of their family, friends, carers etc.? – they will know the patient better. However, they do not make the final decision, only their views are factored in.
• Need for advocacy: if they have no other representatives (e.g. family and friends), they may need an Independent Mental Capacity Advocate.

The views of LPAs are considered, however, the medical team are not obliged to follow them if this is in the person’s best interests. If there is a disagreement, a second opinion from another senior doctor or the Court of Protection is sought.

Emergencies

In emergencies where consent cannot be obtained, immediate interventions are performed to prevent death or a significant decline in health. Sometimes, a second opinion from another senior doctor or medicolegal team may be sought, such as if family members unanimously agree that the patient would oppose life-saving treatments.

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

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 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:

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

Explore their understanding and ICE:

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

Explanation and discussion

How the decision was made

Check understanding first and then explain. Remember to chunk and check and tailor this to their ICE.

Discuss how the decision was made:

• Current events: do they know what’s going on?
• Decision reasons: why was this choice made? What is the team thinking about? (e.g. nutritional insufficiency, risks of getting worse etc.).
• How this decision was made: who was involved in making this decision? Explain (e.g. members of the multidisciplinary team such as speech and language therapists for unsafe swallows).

What the decision is

Discuss what the decision is:

• What the decision entails: for example, if a procedure is indicated
• Decision benefits: what are the benefits of this decision? (e.g. ensuring the patient is in comfort).
• Decision risks: what are the risks of this decision? (e.g. an invasive procedure carries the risk of infection).
• Risks of not following this decision: what could happen if this decision was not followed? (e.g. inadequate treatment or unnecessary treatment and causing discomfort).
• Serious complications and death: what could happen if the decision was not followed? (e.g. surgery may cause more harm than good and bring about death).

Best interests

Discuss why this decision is in their best interests:

• Why this is in their best interests: for example, other options may cause more harm than good. This decision was made based on the person’s wishes and values (if known).
• Decision necessity: explain that this decision would not have been considered if it were not necessary:
  • Preventing death/serious harm: If relevant, explain that this may be necessary to save their life or prevent serious harm.
  • Critical scenarios: if relevant, explain how critical the scenario is and the risk of dying without the intervention.
• Duty of care: explain that not going through with this decision goes against your duty of care.
• If possible, reassure with simple solutions: do not give false reassurance, make any promises, or offer something you cannot give. For example, if they are worried about pain, reassure them that the team will make sure to offer pain relief.

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?
• What would the patient want? – ask them what the patient would want them to do in this scenario if they could:

Negotiation and problem resolution

• If they say no: explain you can only factor this in, but the final decision still lies with the medical team. This is to avoid relatives/close ones making a very difficult decision.
  • If relevant, reiterate that in life-or-death scenarios, the intervention may still be done.
• Reassure about capacity assessments: stress that you always assess capacity before making these decisions in all patients.
• Ask if the patient has made an advanced directive: explain that this can deny treatment if explicitly stated by the patient and is legally binding.
• Ask if the patient has appointed an LPA in health: althoughthey can make decisions on the non-competent patient’s behalf, they still may not make the final decision if this is in the patient’s best interests.
• Explain the law: in the UK, if a person cannot consent/refuse treatment, the consultation in charge makes a decision in their best interests based on the person’s beliefs, views, and what is the least restrictive. Family members can voice concerns, but cannot consent to or decline an intervention on that person’s behalf unless they have been appointed as an LPA and doing this would be in their best interests.
• Offer a discussion with the consultant in charge and discuss with the family as well

If the patient asks what would happen if they tried physically stopping this decision (e.g. taking the patient out of the hospital), inform them that you would need to get hospital security involved.

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.