Talking to someone living at home
Please be aware - this information is for healthcare professionals
The majority of the public have said that, when the time comes, they would prefer to die at home.
But this does not always happen, and many people living with a terminal illness still die in hospital or in a hospice. Sometimes this may be appropriate. However, it may also happen due to circumstances that could have been avoided if the person had been given the right support and information during the course of their condition or illness.
If the patient is currently living at home, asking them some questions about their circumstances may help you understand their needs so you can take active steps to accommodate them.
Use your own expertise and judgment on what’s appropriate in order to develop a rapport with the patient. Below are 10 discussion points that you might want to raise with the patient. These points are here to act as a guide, not a checklist.
1. Changes to the patient’s condition
As the end of life gets closer, a person will likely be aware that their symptoms are changing and that they are less able to carry out simple tasks. Talking about this gives the patient a chance to talk about their concerns. It also gives you an opportunity to discuss things like how they’d like their symptoms to be managed at this point, and if they need any further support to complete daily activities.
2. Choosing where to be cared for
National Institute for Health and Care Excellence (NICE) guidelines state that everyone living with a terminal illness should have the opportunity to discuss and develop a personalised care plan for current and future support and treatment.
This plan should include information such as where they want to spend their last days and hours. Everyone in the multidisciplinary team has a role in helping a person with a terminal illness to explore their options.
Find out if the patient has an advance care plan. If not, talk to their GP or district nurse to see if they can help the patient create one.
You can also refer people to our information on choosing where to be cared for.
3. Support at home
You should consider whether your patient has any carers or family involved in their care when providing person-centred, holistic care at the end of life. This means that you should be thinking of the person as a whole being, considering their spiritual and psychological needs as well as their physical ones, while respecting their wishes.
Talking about this may help you understand who is part of the patient’s support network. It may also lead to constructive conversations with family members about their needs and preferences.
It’s really important that any carers, family members or friends know that there is information available to support them. You can signpost friends and family to our information about being there for someone with a terminal illness.
4. Support for family and friends
Loved ones may also need help and support. Many people with a terminal illness worry about becoming a burden, so talking about this also gives the patient a chance to express any concerns that they might have. You can reassure them that help is available for their loved ones, and offer to help them find out more.
5. Doctors and nurses involved in the patient’s care
It’s important that people living with a terminal illness and anyone caring for them are aware of the health and social care professionals who may be involved.
This involves colleagues from the GP surgery, social services, the specialist palliative care team, district nurses and possibly the local hospital. Navigating the care system can seem complicated and it can be difficult to know who to contact for what. See our guide to services to find out more.
You can also signpost your patient to our information about who is involved in their care.
6. Plan for emergencies
There should be a plan in place to manage symptoms, such as pain, that require immediate attention, especially at night or weekends. This may help to avoid unnecessary trips to hospital and minimise distress.
Everyone on the multidisciplinary care team, including your patient and any family or friends involved in their care, should know about this plan.
The plan should outline who to contact and how to reach them in an emergency. If there is a paper care plan in the house, make sure that any contact numbers listed on it are current and up to date. It may help to add a brief outline of role responsibility alongside the numbers.
Most areas in the UK have access to a call system, often referred to as a Lifeline. This is a button that can be pressed to summon help in an emergency. You may be able to assist with completing the paperwork to order one for your patient. The paperwork should be available from the social services department, or may be downloadable from their website. Try to encourage the person to wear the button or carry it with them. Some people prefer to use a mobile phone to carry around – check that it is charged when you visit.
7. Everyday activities
When someone has a terminal illness, their needs change over time. Although this is usually a gradual process, sometimes changes can happen very suddenly.
You may be the first person to notice that they need adaptations to their home or new equipment. Before the person receives any equipment or has adaptations made to their home, they will need to be assessed by an occupational therapist. You should contact the district nurse, specialist nurse or GP about this.
It may be difficult for some people to admit and accept that they need help. If you think your patient may benefit from further emotional or psychological support, contact the district nurse, specialist nurse or GP.
8. Hydration and nutrition
As people get closer to the end of life, they often lose weight, have difficulty swallowing or lose their appetite.
There are many reasons why they may be eating and drinking less, including physical and psychological issues. So it’s really important for health and social care professionals to take a sensitive approach when supporting their patient to manage hydration and nutrition issues.
If your patient hasn’t already had an assessment for difficulties eating and drinking, contact the district nurse, specialist nurse or GP.
9. Looking ahead: the patient’s thoughts on their future
People with a terminal diagnosis are likely to feel a range of emotions throughout the course of their condition or illness. These may include sadness, fear, anger, guilt and regret.
Some people may be waiting for the opportunity to talk about how they feel, and you may be able to provide a listening ear. Alternatively, they may wish to talk to a chaplain or counsellor. These may be based in the hospice or specialist palliative care team. If you’re not sure how to put them in touch, ask your supervisor or the GP.
Your patient may ask questions about when they might die and what it will be like at the end. If you don’t know or can’t answer, signpost to the district nurse, specialist nurse or GP. It is important that you don’t speculate or provide inaccurate information.
Our information on talking to someone with a terminal illness about death can help.
10. Allowing the patient to open up
It’s important to give the patient permission to talk about anything else that is concerning them. This could be it a small problem that you could help with, or to a significant conversation about approaching the end of their life. Remember to take the time to understand the person’s needs, provide a listening ear and take active steps to understand and meet their care needs.
Make the person aware that, although your conversation is confidential, you may need to share any concerns with other professionals if safeguarding is an apparent issue.
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