End-of-life care: tips for communicating with carers

Over the last decade, national carer organisations have increasingly recognised the particular nature of caring for someone as they approach the end of life, and some specific support has been created, for example, the End of Life Carers Project run by Carers Network.

This has encouraged local carer organisations to recognise carers of those approaching the end of life as being in need of specifically developed, targeted services.

Many of the challenges faced by carers are the same whatever the stage of an illness or disability, but at end of life their urgency and significance are magnified.

Communicating with carers as needs increase

Carers’ needs can change as the cared-for person’s condition progresses, and practitioners should encourage open discussion between all involved. Sometimes the needs of carers conflict with the needs of the person nearing the end of life, so practitioners will require skills in facilitating difficult conversations.

End-of-life carers may want information about their loved one’s prognosis and symptoms, and what to expect as death approaches.

Equally, they may find the only way to cope is to ignore the inevitable. This can be difficult if they are required to have discussions about advance care planning, such as resuscitation, artificial feeding or active treatment coming to an end.

This is especially pertinent if the person they care for lacks capacity to make relevant decisions for themselves or the carer has lasting power of attorney for health and welfare.

The person nearing end of life may want help to organise their will, plan their funeral or discuss arrangements for dependent children.

Again, this can work well if the carer is in the same place emotionally, but it can be painful for both if they are not. If the cared-for person and carer are parents, and the carer wants to make forward plans or prepare the children, it can be very difficult to talk to their children about what is happening if this goes against the other parent’s wishes.

Practitioners will have to think how best to communicate with the carer about matters such as options for a preferred place of care and of death. Should it be at home, in a hospice or in hospital? What are the practicalities in each case? These are not always easy questions to ask or answer.

Tips for communicating with carers as the person nears end of life

• Enable a conversation about end-of-life concerns, both between yourself and the carer, and between the carer and their loved one. Practitioners may worry about offending or upsetting the carer (or the cared-for person), but the worst thing is to say nothing.
• A good place to start can be to ask more general questions about difficult conversations. For example: “In your family, how do people begin difficult conversations?”; “In your household, if someone wants to talk about a sensitive subject who is usually the person to initiate that?”
• We have come across many families/couples who want to talk about difficult or painful matters but wait for a time when it will feel easier. In our experience, the time for it to feel easier never comes. Practitioners should gently probe the possibilities here, perhaps suggesting that planning for dying can be done in the same way as we plan for other unwanted events, like an accident or a burglary. We make an insurance plan and then put it on the shelf to be brought out as and when.
• You may encourage carers to reflect on the personal cost of ignoring the inevitable. You can ask: “If you didn’t have to worry about upsetting them, is there anything you would like to talk about with them?” And if they tell you, you can answer: “What do you think would happen if you were unable to have that conversation with them?”
• The only exception to the rule of persevering with discussions along these lines is if there are reasons to suspect that the carer is abusing the dying person, in which case local authority safeguarding procedures should be followed.

Professionals need skills in initiating and engaging in conversations that are often avoided because they are so difficult. By modelling these conversations, we can encourage individuals and communities to be less frightened of death and more ready to become involved in end-of-life care.

Useful resources to share with carers in end-of-life situations

• Hospice UK’s information and support resources and advice from its Dying Matters campaign.
• Carers UK’s helpline, 0808 808 7777, which is available, Monday to Friday, 9am-6pm.
• Healthtalk.org’s section on caring for someone with a terminal illness.

The guide also covers applying the law on assessment, support planning and review to support carers at this difficult time. Inform Adults subscribers can access the full guide here.

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