Working with families and friends

Doctors and medical students tell us one of the most challenging aspects of end of life care can be dealing with a patient's family and friends' anxieties. This includes helping them to come to terms with the situation, and finding the best way to involve them in decision-making. Effective and sensitive communication is vital but circumstances can make this difficult.

Uncertainty is inherent in end of life care decision making. A patient’s condition may fluctuate, and those around the patient are often trying to maintain hope, while facing the realities of a loved one dying.

Supporting and involving your patient’s loved ones is an important part of any doctor’s role. We know it’s not easy to make sure those close to your patient* get the support they need. Helping them feel their wishes are respected, while not losing sight of the patient’s wishes and preferences can be a challenge.

Here are some points from our guidance and suggestions of other resources that can help you.

Being clear about the role of those close to the patient

The people close to your patients are often keen to help their loved ones make choices about their care. Many patients will value having help from someone they trust to communicate their wishes. Some of those close to a patient may want to participate in their treatment and care.

In some cases, they may have legal power to make decisions when your patient lacks capacity to make their own choices (paragraph 17). This can present a range of uncertainties around how much you need to involve some people. This may include sharing confidential information with them to help provide a good standard of care.

You must respect a patient who has capacity's wishes about who they do, or do not, want involved in or informed about their care. Our guidance has advice on sharing information and how to respond when someone close to a patient wants to discuss their situation (paragraphs 64–66).

If those close to the patient do not have legal authority to make decisions on their behalf, it is important to be clear they are not being asked to take responsibility for treatment decisions. Their role is to advise you on your patient’s wishes, preferences, beliefs and values to help you make a decision (paragraph 22). We know from feedback that this can be an area of confusion for families and carers in particular. Our guidance may help you reflect on your approach to involving family and carers. You can also find more resources and support from other organisations.

Planning ahead for family/carer involvement

Involving your patient’s loved ones can be easier if conversations about a patient’s wishes and preferences happen early on in the care pathway. The healthcare team and those close to the patient can then be aware of their wishes when making decisions.

Advance care plans help people who are facing possible deterioration in their health understand what the future might hold. They can think about what's important to them and who they may want to make decisions for them if the time arrives where they can no longer express a preference or make their own decision.

Advance care plans also help healthcare staff to make decisions with confidence. They can help them work with a patient’s family or others close to them when they are not clear about what the patient would want (paragraphs 50–55).

Read more advice and guidance on approaching advance care planning conversations.

Explaining uncertainty and avoiding misunderstanding

Emotional distress in situations where patients are approaching the end of their life can provoke different reactions in different people. This can lead to misunderstandings and conflict between family members or others close to a patient.

People may draw incorrect conclusions from the terminology used by healthcare staff. ‘Palliative treatment’ could be misunderstood as something to reverse or slow deterioration in a patient’s condition, rather than something to treat and manage symptoms.

Conversations around CPR and clinically assisted nutrition and hydration can be particularly difficult. Evidence shows the public’s knowledge about the realities and clinical complexities around these interventions is poor.

Misunderstandings about a patient’s diagnosis or treatment can be avoided by taking time to provide careful explanations. Taking extra steps to find and provide resources to help patients and their families absorb complex or distressing information may also help. See our guidance (paragraphs 28-29, 31–36) and examples of the resources available in our resources section.

Resolving disagreements

When dealing with families and friends, it is possible disagreements will arise about the best course of action for the patient. Most disagreements can be resolved by:

  • Seeking advice from a more experienced colleague
  • Obtaining a second opinion
  • Involving a Nominated Practitioner (Scotland)
  • Holding a case conference
  • Involving an independent advocate
  • Using local mediation services

In the case of significant disagreement, you should seek legal advice on applying to the court for an independent ruling or, if in Scotland, the appropriate statutory body for review.

You can find more advice about this in our guidance (paragraphs 47–48) and the resources section.

Footnote

When referring to family and friends and those close to the patient we mean anyone nominated by the patient, close relatives (including parents if the patient is a child), partners and close friends, paid or unpaid carers outside the healthcare team and independent advocates. It may include attorneys for property and financial affairs and other legal proxies, in some circumstances.

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