Patient wishes

Exploring wishes

Following on from the communication section above, collaboratively establishing what a patient wants for their care is essential.

If they have capacity and can communicate, open questions can be useful, such as ‘given what I’ve told you about your health right now, what are your thoughts about what lies ahead and how you want to be treated?’

If they are unable to communicate, you could get advice from a family member about a patient’s final wishes, saying ‘if your mum could talk to us now, what would she say she wanted?’ or ‘did your mum ever mention before how she wanted to be cared for if her health suddenly declined?’

Framing the conversation around what elements of care will or will not be helpful for a patient is better than a narrowly conversation specifically on withholding treatment such as cardiopulmonary resuscitation (CPR)4. Inappropriate escalation of care within the hospital, such as to the intensive care unit, should also be explored and documented.

Pre-existing documentation

Some patients may have formally recorded the outcome of any previous decisions in an advanced care plan (ACP). This requires that a patient had capacity at the time the document was drawn up.  A range of types exist20,21:

Advance Statement

This is a written statement setting out a person’s preferences, wishes, beliefs and values about any aspect of their future health or social care. It could include where they would prefer to be cared for, what treatments they would like, and what their priorities of care would be (such as pain control and being cared for at home prioritised over hospital care, even if treatment might be more effective there). It is useful as a guide to an individual, and must be taken into account, but is not legally binding.

Advance Decision to Refuse Treatment

This sets out in writing treatments that an individual does not wish to receive if they are unable to communicate or lose capacity. It is legally binding if valid, applies to the current healthcare situation, and was drawn up in compliance with the Mental Capacity Act 2005 (for England). Each treatment must be individually named, with the circumstances in which the patient wishes to refuse it, for it to be included within the scope of the document. These were formerly known as living wills.

Do Not Attempt CPR decision

A DNACPR decision relates solely to CPR in the event of a cardiac arrest and does not exclude any other intervention. Its narrow scope limits its usefulness. A more comprehensive approach to individualise treatment limitations is the Resuscitation Council’s ReSPECT form (Recommended Summary Plan for Emergency Care and Treatment) which emphasises discussion, shared understanding and shared decision-making for care in emergencies.

Lasting Power of Attorney for Health and Welfare

A lasting power of attorney (LPA) can be appointed for either health and welfare, property and financial affairs, or both. It is important to confirm that a health and welfare LPA specifically has been appointed. To be valid, the LPA must have been drawn up voluntarily when the individual had capacity, then registered with the Office of the Public Guardian. If the patient subsequently loses capacity, the attorney can make binding decisions in the donor’s best interests on life-sustaining treatment, medical care and daily routine. If conflict arises between an advance decision to refuse treatment and a lasting power of attorney, an application may have to be made to the Court of Protection or similar for a one-off decision.

Electronic Documentation

The patient may have an entry either on the Electronic Palliative Care Co-ordination System (EPaCCS) in England, or an electronic summary care record with their GP that contains information on their wishes.

These elements of advanced care planning vary in their legal status between countries and regions of the UK. Consult your hospital palliative care colleagues or legal advisor if there is any doubt.

Lack of capacity

If a patient lacks capacity and has no valid advanced care planning in place, decisions must be made by clinicians in the patient’s best interests, guided by family members or loved ones, in accordance with the mental capacity legislation that applies in your jurisdiction.

Organ donation

Part of ascertaining a patient’s wishes may be a discussion around organ donation.

Legislation varies across the UK22. Since 2015 in Wales, if a patient has not registered a donation decision (either opting in or out), they will be considered to have no objection to organ donation – called ‘deemed consent’. Scotland has a similar approach called ‘deemed authorisation’ since 2021. In England, since 2020, individuals are assumed to agree to organ donation unless they have indicated that they wish not to donate – an ‘opt out’ system. Northern Ireland in contrast has an ‘opt in’ system only at present, where individuals must indicate that they wish to donate their organs, though this is due to change in 2023.

If a patient in your ED is receiving end of life care, it may be appropriate to discuss their case with the Specialist Nurse for Organ Donation (SNOD) to consider suitability and further steps.

Learning Bite

Exploring a patient’s wishes for end of life care is essential. A range of documentation can help with this process, so remember to ask if any exist.