Talking to someone recently diagnosed with a terminal illness

Please be aware - this information is for healthcare professionals

If you provide nursing or social care to someone who has just been diagnosed with a terminal illness, you are in a unique position to support them at a critical time.

Receiving a terminal diagnosis can be incredibly overwhelming. As well as the emotional impact, the patient and their family are likely to have anxieties about practical matters, such as finances, employment and the health and social care arrangements they need to make.

It’s important to be aware that the person may have already started grieving, and may not be aware of it. They may have thoughts of loss regarding their future and their role in their family. Their loved ones may also have started grieving.

You can use the suggested discussion points below to start talking to the patient about their circumstances. They may help you understand their practical and emotional needs, so you can take active steps to accommodate them. The discussion points may also help the patient navigate their own thoughts about what they are going through.

Use your expertise and judgment on what’s appropriate in order to develop a rapport with the patient. These points should be used as a guide, not a checklist. 

1. The patient’s understanding of their diagnosis

It’s important to give the patient a chance to tell their story. It may help you get a sense of how well they understand their diagnosis, and how they are taking the news.

Talking to you may be a relief, or they may not be ready yet. Try and let the patient do the talking and don’t interrupt. Your body language is also important and nodding occasionally and trying to maintain eye contact can help make sure they know that you’re listening. Don’t be anxious to fill any silences – give the patient time to think.

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2. Their feelings about their diagnosis

Everyone will have their own response to being diagnosed with a terminal illness, so be prepared for a range of possible reactions. They may feel numb, or in shock. Anger, fear, guilt and sadness can also be common reactions. Avoid giving false reassurances, or saying that everything will be OK. Instead, try to actively listen and empathise. Tell them about available support, and reassure them that they won’t have to face their diagnosis alone.

Another possible reaction is disbelief, which is a normal reaction to hearing bad news. If you are concerned that disbelief has changed to denial over time, consider contacting the person’s GP or specialist nurse. A referral to a counsellor may also be an option.

Encouraging the patient to read our information about feelings and how to cope with them may help

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3. Questions about their diagnosis

The person may have a lot of unanswered questions about what happens next. Don’t give any answers you’re not sure of. Instead, explain that you can’t speak beyond the scope of your qualifications, but you can offer to request a follow-up consultation with another professional from the team.

Find out if the patient was given contact details for a specialist nurse at the hospital during the appointment. You can also encourage them to read our advice on talking to their doctor and preparing for appointments

If you feel you don’t have the medical knowledge to answer questions about the person’s diagnosis, it would be best not to ask this question.

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4. Current concerns or worries

You should try to give the patient a chance to voice their worries. Never assume you will know the answer. Make sure the patient knows you’re listening and respond where appropriate.

Think about what you can do to help them, whether it’s providing reassurance, empathy or information. If you offer to get advice from other members of the multidisciplinary team, make sure this is followed up. You could also look into any local support available, such as a palliative care psychologist.

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5. Emotional support 

It can help to encourage the person to think about the people in their life who can provide support. It also gives you an opportunity to understand who might be involved in supporting and caring for the person. This helps with care planning – not just for the person with a terminal illness, but also for their loved ones.

Looking after the whole family is an important part of palliative and end of life care. There may also be people in the patient’s life who they would like around at this time. They may also have a relationship with a care professional such as a GP.

Relationships can be complicated and this will be an emotional time. You might be able to help facilitate conversations that the person finds difficult. If the patient has spiritual or religious beliefs, they may benefit from speaking with a faith leader, or a friend with the same beliefs.

This is also a good time to reassure the patient that they can talk to anyone in their health and social care team, at any time. You can also tell them about the support available from Marie Curie. We’re here to talk to anyone who is affected by a terminal illness

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6. Support for friends and family  

Carers, family and friends should also be considered when providing person-centred, holistic care at the end of someone’s life. Asking about friends and family may help you understand who is part of the patient’s support network. This may lead to constructive conversations with family members about their needs and preferences. 

It would be a good idea to find out if there are any children or young people who may need information or signposting to relevant support.

It’s really important that family and friends know that there is information available to support them. You can signpost them to our information about being there for someone with a terminal illness

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7. Managing the patient’s care  

It’s really important that everyone who receives a terminal diagnosis has the best quality of life possible. Navigating the palliative and end of life care system can be difficult.

By asking about how the patient wants their care to be managed, you can find out how much they understand about who will be managing their medical and nursing care. Sometimes, the information given at outpatients’ appointments may be overwhelming and important things can be forgotten.

The patient may need another appointment to clarify some issues. This could be with their GP, rather than their specialist, if this is more convenient. You could suggest that a friend or relative goes with them and writes down what is said.

It may also a good idea for the patient or their carers to write down their questions beforehand to take to appointments.

The patient and their family may find it helpful to read our information about talking to their doctor and preparing for appointments

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8. Advance care planning

Having a conversation early about advance care planning can be very helpful, although  thinking too far ahead may be difficult for some people. You may find it helpful to reassure the patient that while they don’t have to make any decisions straight away, planning ahead may give them peace of mind that they are prepared for the future and that their wishes will be considered. It is also important that they are aware that they can always change their mind about their wishes.

The patient and their family can read our information on planning ahead, which includes advance care planning

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9. Practical support

Practicalities like food shopping, meal preparation and child care may be concerning the patient. Sometimes, people don’t want to worry others or even admit that they aren’t coping with day-to-day tasks.

By encouraging the person to talk to you about these issues, you may be able to help them find practical ways to meet their needs. You could try to find out about any local services that may be able to provide practical help, such as delivery of frozen meals or Marie Curie Helper volunteers. There may be another parent or friend of the patient who can do the school run. If it seems appropriate, you may want to consider referring the patient for an assessment for a care package to help with daily personal and domestic activities that they may be finding more difficult to manage on their own.

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10. Allowing the patient to open up

It’s important to give the person permission to talk about anything else that is concerning them. It could be a small problem that you could help with, or 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. You may be able to suggest support from a faith leader or close friend, particularly if spiritual issues arise.

You should make the person aware that, while your conversation is confidential, you may need to share any concerns with other professionals if safeguarding is an apparent issue.  

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