How to... Provide good end-of-life care

Get your approach to treating terminally ill patients right, advises the MDU's Dr Jacqueline Phillips.

Providing end-of-life care and treatment can raise dilemmas for a GP (Photograph: SPL)

Treating and caring for patients towards the end of their life can raise difficult dilemmas for GPs, not least because patients' and families' emotions may be raw.

Guiding principles
GPs need to be aware of the GMC's latest guidance Treatment and care towards the end of life, which came into force in July 2010. This revised publication explains what is ethically permissible and reflects legal changes, such as the Mental Capacity Act 2005. Patients approaching end of life are defined as those likely to die within 12 months.

The GMC's guidance explains the principles underpinning end-of-life care. It says that decisions about life-prolonging treatment should start from a presumption in favour of prolonging life, although the consequences for the patient must be considered.

Adult patients should also be presumed to have capacity to make decisions about their care.

Getting care right

Talk to patients about their condition or prognosis even if this difficult or distressing for them. Patients may appreciate the opportunity to invite a friend or relative to be present during the discussion.

Establish what information the patient wants you to share, with whom, and in what circumstances. This can help to avoid disclosures that patients might object to.

Time to reflect
Give patients adequate time to reflect and ask questions, and to change their mind. Ideally, give them opportunity in advance to consider what arrangements they would like in the final stages of their illness.

Make a note of the decision-making process concerning a patient's capacity, including discussions with the patient and their family.

Unwelcome details
If patients make it clear they do not want to know details about their condition or treatment, explain why you think they need to understand the options and ask why they do not want the information.

If they still do not want to know, respect their wishes as far as possible but explain what information you need to provide so they can give valid consent to treatment. When patients continue to insist they don't want to know, the GMC says you should explain the potential consequences and make a note of their decision and make it clear that they can change their mind at any time.

Capacity is key
For adults with capacity, GPs should identify clinically app-ropriate treatments likely to result in overall benefit. All treatment options should be explained, and the benefits, risks and burdens made clear. Patients have the right to refuse an option, even if this seems irrational.

If a patient requests treatment the GP does not consider appropriate, they do not have to give it, provided they have explained their reasonings and other options the patient might consider, including a second opinion or legal advice.

For adults lacking capacity, GPs should take into account whether the patient has made a legally binding advance decision or whether an attorney or legal proxy has been appointed. If no legal proxy exists, GPs are responsible for deciding which treatment will provide overall benefit. The decision should take into account the patient's views if they are able to contribute; anything known about the patient's wishes, feelings, beliefs and values; the views of those close to the patient and of the healthcare team (GMC guidance, paragraphs 14-16).

Advance care planning
GPs often help patients plan ahead about the arrangements they want in the final stage of their illness. They may need to advise patients about the option to nominate someone to make decisions on their behalf if they lose capacity, such as a lasting power of attorney (LPA) in England and Wales or a welfare attorney in Scotland, or about making an advance decision or directive.

A valid advance refusal, clearly applicable to the patient's present circumstances, must be respected, and is legally binding in England and Wales, and potentially binding in Scotland and Northern Ireland.

The GMC's guidance explains how to assess the validity and applicability of such decisions, and what to do if there is doubt or disagreement about the status of advance refusals. However, even if not legally binding, any statement of the patient's wishes should be taken into account when assessing treatment options (paragraphs 67-74).

Common queries
On average, the Medical Defence Union (MDU) opens six advice files a month on end-of-life care and deals with many more queries on its advice line. Queries relating to advance decisions, 'do not resuscitate' decisions and LPAs are most common.

Issues of concern include:

  • Advance decisions to refuse treatment, including how to decide if a patient has capacity.
  • 'Do not resuscitate' decisions, including complaints from patients' families who believed they should have been consulted.
  • LPAs - for example, patients asking GPs to help with forms.
  • Withdrawal of treatment, including how to deal with disagreements between family members over whether withdrawal was in a patient's best interest.
CPD IMPACT: earn more credits

These further action points may allow you to claim more credits.

  • Consider your practice's approach to treating patients who are terminally ill. Make sure all the GPs are aware of the GMC's revised guidance.
  • Does the guidance indicate the practice needs to change its procedures, for example, for ascertaining patients' wishes and ensuring these are recorded in their medical records? Hold a practice meeting to decide on changes needed and implement them.
  • Draw up or revise the practice's protocol for end-of-life care and make sure it is circulated to all GPs and staff.

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