Talking about dying with a parent

This page is part of our guide to end of life care, in the section on end-of-life care at home.

The reason to ask early is that the choices only belong to your parent while they can still make them and tell someone. The NHS and the charities that work in this area call the conversation advance care planning. NHS England's universal principles for advance care planning, published in 2022 by NHS England with a coalition of health, care and charity organisations, describe it as a voluntary conversation, often several over time, about what matters to the person and what they would want in future. They also say that when it is done well, families are less likely to be left deciding for someone without knowing what that person wanted.

The guide below sets out the things most worth covering, with a first question for each. It is not a script, and your parent may want to talk about one and not another.

Where your parent wants to be is often the question with the most practical weight, because it decides what has to be arranged. If they want to stay at home, that usually means help in the house, a GP and district nurses who know the plan, and someone to ring at night. Choosing where to die goes through home, a hospice, a hospital and a care home, and what makes each one possible.

Hospice UK's advice on talking about death and dying is to talk face to face or on the phone rather than in a message, in a quiet place where you will not be interrupted, and to use clear words rather than euphemisms. Its Dying Matters leaflets suggest starting with a question, such as "Do you think we should talk about...?", and saying out loud that it is not easy: "We have never talked about this before, but...". Marie Curie's advice on starting conversations about the end of life is to take your cue from your parent and let them set the pace and tone.

If your parent does not want to talkSection titled If%20your%20parent%20does%20not%20want%20to%20talk

Some people do not want to talk about dying, and that is their right. The universal principles say plainly that nobody should be pushed or rushed into these conversations, that a person who declines should have that respected, and that the subject can be raised again gently later. Hospice UK notes that a parent who avoids eye contact or changes the subject may not be ready yet.

It can help to break the conversation into smaller pieces. A parent who will not discuss dying may be happy to say who they would want to make decisions for them, or which hymn they like, and each of those is part of the picture. If your parent is already unwell, you can ask their GP or nurse to raise it as part of their care.

Disagreements often start when people hear different things at different times. A little structure helps, especially where one child lives nearby and does most of the caring.

1. 1

   Ask your parent who they want involved

   Before anyone else

   Some parents want the whole family there, others one person. The universal principles put the person at the centre, including deciding who else takes part.
2. 2

   Share what was said, as your parent said it

   Soon afterwards

   Write it down in their words and share it with the people your parent agreed to. A written note is harder to remember differently later.
3. 3

   Hold a family meeting for the practical parts

   When decisions are needed

   Who takes the GP appointments and who covers which nights are family decisions, and your parent can join in if they want to.
4. 4

   Agree that their wishes come first

   Before any disagreement

   Agree that everyone will follow what your parent chose, even where one of you would have chosen differently.

Holding a family meeting about care has an agenda, and advice on keeping the meeting calm when brothers and sisters see things differently. If you cannot settle a disagreement, ask the GP or the palliative care nurse to talk to the family together and explain what is medically possible.

If a paid carer is involved and several of you want to follow what is happening, family members can each join the same PrimeCarers account with their own login, and the conversation with a carer who accepts a job includes the family members on the account, so nobody has to relay messages second-hand.

For most families the advance statement is the natural place to start, because it records the things in the conversation guide above and needs no forms. The NHS page on advance statements says it is not legally binding, but that anyone making decisions about your parent's care must take it into account. That duty comes from section 4 of the Mental Capacity Act, which requires anyone deciding in a person's best interests to consider their past wishes, and in particular anything they wrote down while they could decide. Compassion in Dying, a charity that helps people plan ahead, has a free advance statement form and guidance.

The other documents have their own guides. Advance decisions and advance statements explains how to make a refusal of treatment that doctors must follow, and how DNACPR and ReSPECT fit alongside it. Lasting power of attorney explains the health and welfare form, including the choice about life-sustaining treatment, and how to register it. GOV.UK's page on the types of lasting power of attorney confirms the health and welfare LPA can only be used when your parent is unable to make their own decisions.

NICE guidance on end of life care (NG142) says a person approaching the end of life should have a copy of their advance care plan where they live, or with them if they go into hospital, a hospice or a care home. Marie Curie's page on planning care in advance suggests having the plan recorded in your parent's health records, and says some areas have an electronic record that hospital staff and out of hours doctors can see. It varies, so ask.

If your parent's wish is to stay at home, somebody usually has to be in the house for the hours between the nurses' visits. On PrimeCarers, which is an introductory service rather than an agency, you choose the carer, talk to them first and agree the hours directly with them. When you are ready, you can search for carers near you and compare their rates. Carers there charge £18 to £25 an hour with our fee included, and live-in care starts at £1,050 a week; the cost of end-of-life care at home sets out the costs and what the NHS may pay for. Before a carer appears on the site, their identity and right to work are checked, they have an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and they are interviewed online. They are insured while they work. Any palliative experience on a profile is the carer's own account, so ask them about it.

Show the carer where the plan is kept and give them the district nurse's number. What a carer does at this stage sets out what a carer does at home and what stays with the nurses. The profile of the person being cared for in your PrimeCarers account also has a place to record lasting power of attorney details; recording them there does not change anyone's access to the account.

The Dying Matters leaflet on talking about dying when someone has dementia says the best time to start is soon after the diagnosis, because a lasting power of attorney, a will and an advance decision all take time to arrange. NICE's dementia guideline (NG97) says people with dementia and those caring for them should be offered early and ongoing chances to talk about lasting power of attorney, an advance statement, advance decisions and their preferences for place of care and place of death.

The Mental Capacity Act says the person deciding must consider your parent's past and present wishes and feelings, their beliefs and values, and must take into account the views of anyone caring for them or interested in their welfare, and of any attorney. So even late in dementia, what your parent says and shows matters. The universal principles make the same point: someone who can no longer take full part in planning may still be able to say what they like and do not like, and that should shape their care. Mental capacity and how it is assessed explains how capacity is judged, and lasting power of attorney and dementia covers the timing of the forms.

If talking is getting harder, ask about one thing at a time, on a good day, in the words your parent uses. The Dying Matters leaflets, including one on talking about dying when someone has dementia, are free to download. Alzheimer's Society has guidance on advance decisions and advance statements with dementia, and end-stage dementia care at home covers the decisions families face later on.