Making decisions about end of life care

What decisions need to be made at end of life?

As someone nears the end of their life there will be important decisions to make about their treatment and care. They may be able to make those decisions for themselves, but that is less likely. 

These decisions may include whether they should be resuscitated if their heart or breathing stops, as well as whether to accept blood transfusions, tube feeding or antibiotics for infection. 

They may also include where the person wishes to die, and whether any religious practices should be observed at or after their death.

How are decisions made at end of life?

Many people – including health and social care professionals – find it difficult to talk about these issues in advance. Often the person’s next of kin assume that they automatically have the final say on decisions, if the person has lost the ability (known as ‘mental capacity’) to make them. However, this is not the case.

If the person with dementia has previously had open discussions about their future decisions, wishes and preferences (advance care planning), it will be much easier to act on these when they are no longer able to decide for themselves. The person may have expressed these using one or more of the following:

• Advance decision (or advance directive in Northern Ireland) to refuse treatment. This is a legally binding document.
• Advance statement of wishes (for example, in a ‘Preferred priorities for care’ document). This is not legally binding, but it should be taken into account.

Who can make end of life decisions on behalf of a person with dementia?

If the person is in England or Wales they may have made a health and welfare Lasting power of attorney (LPA). If not, a health and welfare deputy may have been appointed by the Court of Protection (though this is much less common). 

The person appointed as their attorney or deputy will have the power to make decisions about the person’s care and treatment. They should discuss these decisions with health and social care professionals and act in the person’s best interests.

They may be able to refuse or consent to life-sustaining treatments on the person’s behalf if their appointment specifically includes that power. 

Health and welfare LPAs and deputyships are not currently available in Northern Ireland.

What happens if the person has not set out advance care planning?

If the person has not made a relevant advance decision, or if there is no LPA or deputy for health and welfare, decisions about the person’s care and treatment will be made by health and social professionals.

These health and social care professionals must act in the person’s best interests and should involve you in decisions about the person. They should also take into account the person’s feelings and wishes, including any that are included in an advance statement or in the person’s care plan. They should discuss things with you in a sensitive and straightforward way.

While certain medical treatments can be refused, nobody can refuse (or be refused) basic comfort and care (for example, pain relief or washing) or demand that a particular treatment is given.

Can health professionals decide not to resuscitate a person at end of life?

The doctor in charge of the person’s care may decide that trying to resuscitate them if their heart or breathing stops would not be in their best interests. Often this is because it’s unlikely to be successful.

The doctor will then make out a DNACPR (do not attempt cardiopulmonary resuscitation) order – sometimes just called a DNR (do not resuscitate) or DNAR (do not attempt resuscitation).

The doctor should discuss this decision and the reasons for it with those close to the person (such as carers, relatives or close friends), or with any advocate appointed by the hospital or local council if the person doesn’t have anyone to speak for them. They should also consult with any health and welfare attorney(s) or deputy.

In cases where there is doubt or disagreement over what is in the person’s best interests, it may sometimes be necessary to make an application to the Court of Protection (or the High Court in Northern Ireland) for it to decide.

Considering cultural, spiritual or religious beliefs and practices at end of life

When a person is in the later stages of dementia and nearing the end of their life, their care should be based around how they are feeling, and any cultural, spiritual or religious beliefs and practices.

Everyone supporting the person (including care professionals) should use their knowledge of the person and any advance care planning the person has put in place.