When Families Disagree With Care: Capacity, Consent and Decision-Making
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A patient's condition has deteriorated and the clinical team is talking with their family about what happens next. One relative says, “Mum would never have wanted this.” Another wants every possible treatment continued.
If you are the student nurse in the room, it can sound as though somebody now has to decide which relative is right.
That is not how the decision is made.
The first question is not who the next of kin is. It is whether the patient can make this particular decision for themselves. If they can, their decision is the one that matters, even when people close to them disagree with it. If they cannot, the team has to establish what legal framework applies, whether the patient made any relevant decisions in advance, whether anyone has legal decision-making authority, and what is known about the patient's own wishes, values and beliefs.
The family may be central to that process without automatically becoming the decision-maker.
Start with the patient's own decision
Capacity is not a label attached to a person because they have dementia, delirium, a learning disability, mental illness or a serious physical illness. It relates to a particular decision at the time that decision needs to be made. A person may be unable to make one complex decision but perfectly able to make another, and capacity can change as their condition changes.
Before concluding that someone cannot decide, appropriate support should be offered. That may mean treating reversible causes such as delirium where possible, choosing a better time for the conversation, using communication aids, involving speech and language therapy or arranging a professional interpreter.
If the patient has capacity, relatives do not acquire a veto because they disagree. A capacitous adult can consent to or refuse treatment, including making a decision that other people regard as unwise. The clinical team still needs to explain the realistic options, benefits, burdens and consequences, but the patient's autonomy remains central.
So what does “next of kin” actually mean?
Students often hear “next of kin” spoken about as though it gives a relative automatic legal authority over healthcare decisions. For an adult, it does not.
A husband, wife, partner, adult child or other relative can be an important source of information about the patient. They may know how the person lived, what they valued, what they had previously said about treatment and what they would find acceptable. Their knowledge can be extremely important when the patient can no longer speak for themselves.
But being the closest relative is different from holding a formal legal power to make a particular decision.
That distinction is worth checking carefully in practice. In England and Wales, for example, a registered health and welfare Lasting Power of Attorney may have relevant decision-making authority once the person lacks capacity, but the scope of the document needs to be checked. Authority over life-sustaining treatment must have been specifically granted. A court-appointed deputy may also have relevant powers.
Scotland uses different terminology and legislation. A welfare attorney, welfare guardian or person authorised under an intervention order may have powers relevant to medical treatment, but again the actual scope of those powers needs to be established. The title alone does not tell you that somebody can make every healthcare decision.
When the patient cannot decide, their voice does not disappear
Imagine that the patient in our opening situation is unable to understand and weigh the information needed to decide about the proposed treatment. The conversation now changes, but it should not become a discussion about what everybody else wants for them.
What did the patient say when they were able to discuss these things? Did they ever talk about what mattered to them if they became very unwell? Is there a written statement, an advance decision or another form of advance care planning? What were their beliefs, priorities and fears? What can the family tell the team about the person behind the illness?
In England and Wales, the Mental Capacity Act 2005 requires a best-interests decision to consider the person's past and present wishes and feelings, beliefs and values, alongside the other relevant circumstances. The person should still be involved as far as reasonably practicable, and relevant family, carers, attorneys and deputies may need to be consulted.
A valid and applicable advance decision to refuse treatment can carry particular legal force in England and Wales. If it applies to the treatment now being proposed, it has effect as though the patient had made the refusal while they still had capacity. Additional legal requirements apply where the advance decision refuses life-sustaining treatment.
Scotland asks similar human questions, but under a different legal framework
This distinction is especially useful for Scottish students because it is easy to hear “best interests” used conversationally and assume it is the statutory test everywhere in the UK.
Under the Adults with Incapacity (Scotland) Act 2000, an intervention must benefit the adult and that benefit must not reasonably be achievable without the intervention. The option should restrict the adult's freedom as little as possible. The adult's present and past wishes and feelings must be taken into account so far as they can be ascertained, and relevant others should be consulted where reasonable and practicable.
For medical treatment under Part 5 of the Act, the responsible medical practitioner may issue a certificate of incapacity in relation to the treatment decision. This provides authority for treatment that is reasonable in the circumstances to safeguard or promote the adult's physical or mental health, subject to the Act and its safeguards.
If there is a welfare attorney, welfare guardian or other proxy with powers covering the proposed treatment, their legal role has to be respected. Scottish law also provides a specific dispute-resolution mechanism for some disagreements between the treating practitioner and a proxy. This can involve an independent nominated practitioner through the Mental Welfare Commission and, in unresolved cases, the Court of Session.
So although the practical conversation may look similar at the bedside, the legal reasoning underneath it is not simply the Mental Capacity Act with Scottish terminology substituted.
What about Northern Ireland?
The Mental Capacity Act (Northern Ireland) 2016 was designed as a combined mental capacity and mental health framework for people aged 16 and over, but it has not been fully commenced at the time of writing this article.
Phase One brought particular provisions into operation, including areas relating to deprivation of liberty, research and money and valuables. The whole Act should therefore not be presented as though it currently governs every ordinary treatment decision. GMC guidance continues to identify common law as relevant to treatment decisions outside the commenced statutory provisions.
For a student nurse, the safest lesson is not to try to carry four legal systems in your head during a difficult conversation. Know that the law differs across the UK, recognise when capacity or legal authority is central to the situation, and involve the registered and senior clinicians responsible for the decision.
What if the family wants treatment the team does not think should be offered?
This is where the language used around families can become unhelpful. A relative asking for “everything” may be frightened that stopping an intervention means abandoning the person they love. The clinical team may be trying to explain that a treatment is no longer capable of providing the benefit the family hopes for.
Listening to the family does not mean that clinicians are required to provide treatment they judge to be clinically inappropriate. GMC guidance is clear that even a patient with capacity cannot require a clinician to provide treatment that the clinician considers would not serve the patient's needs. The reasons should be explored and explained, and other reasonable options, including a second opinion where appropriate, should be discussed.
For a patient who lacks capacity, the discussion remains centred on the patient: what treatment could realistically achieve, what burdens it would impose, what is known about the person's wishes and values, and what the applicable law requires.
This is also why phrases such as “the family decided to stop treatment” can be misleading. Depending on the circumstances and jurisdiction, a legally authorised proxy may have a formal decision-making role, but ordinary family consultation is not the same thing as transferring the clinical decision to the relatives.
When the family and team still cannot agree
Disagreement does not automatically mean that anyone has behaved badly. Families may be processing frightening information at a different pace from the clinical team. They may have received mixed messages, misunderstood what a treatment can achieve or know something important about the patient's wishes that has not yet been heard.
Often the first useful step is another careful conversation. What exactly is disputed? Is everyone using the same words to mean the same thing? Has the prognosis been explained clearly? Does the family understand whether the discussion is about stopping one treatment, changing the goals of care or withdrawing all care? Those are very different things.
Depending on the situation, resolving disagreement may involve a senior review, another clinical opinion, an advocate, a multidisciplinary meeting, a case conference, local mediation or clinical ethics support where available. GMC guidance recommends trying to reach consensus while recognising the different legal authority held by the people involved.
There is not one universal UK staircase in which every disagreement moves from a ward meeting to an ethics committee and then to court. The route depends on the decision, the jurisdiction and who holds legal authority.
When a serious disagreement cannot be resolved, legal advice may be needed and a court or another statutory process may become involved. In England and Wales, significant disputes about decisions for someone who lacks capacity may involve the Court of Protection. Scotland has its own routes under the Adults with Incapacity legislation, including the specific section 50 process for certain medical-treatment disputes with a proxy. Northern Ireland has its own legal framework and court processes.
What does the nurse contribute?
You may not be the person making the legal or medical decision, but nursing observations can be important to it.
Nurses often spend more time with the patient and family than anyone else in the team. You may hear the patient express a preference during personal care that they have not voiced on the ward round. You may notice that they understand information much better in the morning than when they are exhausted later in the day. A relative may tell you about a conversation the patient had before becoming unwell. You may notice that two family members have understood the same medical discussion very differently.
Those details need to reach the appropriate registered nurse and clinical team. Record relevant information accurately and distinguish what the patient actually said from somebody else's interpretation of what they would have wanted.
During difficult conversations, listen to the language being used around the patient as well. “The family are being difficult” tells us very little. “The patient's daughter believes ventilation should continue because her mother previously recovered after a serious admission and she does not understand why this illness is different” gives the team something it can actually address.
The NMC Code asks nurses to preserve dignity, uphold people's rights, work in partnership, advocate for vulnerable people and follow the mental-capacity law that applies in the country where they practise. In a family disagreement, those responsibilities often show up in quiet ways: making sure the patient is still included, recognising a communication barrier, asking whether legal authority has actually been checked, passing on something important the patient said, or seeking senior support when a conversation is becoming unsafe or unclear.
Keep bringing the conversation back to the patient
Return to the family from the beginning. One relative says their mother would never have wanted the proposed treatment. Another wants everything possible done.
Neither statement can settle the question by itself.
The team needs to know whether the patient can decide now. If not, it needs to establish whether there is a relevant advance decision or legally authorised decision-maker, understand what the patient previously expressed, listen carefully to those who know them, consider what the treatment can realistically achieve and follow the law that applies where the patient is being cared for.
Sometimes that process leads to agreement. Sometimes it needs a second opinion, mediation, statutory dispute-resolution process or court involvement. Whatever happens, the patient should not disappear behind the disagreement.
That is probably the most useful thing to remember when you encounter one of these conversations on placement: the loudest voice in the room is not automatically the person who decides. Start with the patient, establish the legal position, and work from there.
References and further reading
Adults with Incapacity (Scotland) Act 2000.