Talking to someone with a terminal illness about death
Please be aware - this information is for healthcare professionals
A person with a terminal illness may have many questions. Some of these may be difficult or distressing for them to discuss, so it is important to listen and respond sensitively to any concerns. You may find the person turns to you because of your role and because they know and trust you.
Some difficult topics may come up that you may not feel you have the expertise to deal with. You don’t need to have answers to every question – and sometimes, there may not be a solution to a problem.
It can help to plan ahead by finding out as much about the person as possible before you visit. Think about some of the questions or worries that they may have, and have a plan for how you’ll respond.
Don’t assume that you know how a person is feeling though – let them tell you. Also, never lie to the patient or give them false hope.
Above all, try not to avoid talking to your patient about their terminal illness because you’re worried or afraid. It’s vital the patient feels listened to and supported at this difficult time. If you don’t feel you have the knowledge and expertise to have these conversations with a patient, you could speak to your manager about accessing training that could help.
What are some common worries and questions that people who are living with a terminal illness have?
Everyone is different and will have their own experience of living with a terminal illness. Commonly, people may worry about or ask you:
- whether they are dying
- when they will die
- whether they will lose control
- if they will suffer
- how their loved ones will cope
These types of questions can be difficult to answer, and may make you feel uncomfortable. However, it’s important not to panic and try to address the questions as best you can. It might be tempting to give an answer that you think will make someone feel better, but this can make dealing with difficult questions even harder and can be damaging for the patient.
It’s important to remember that your focus shouldn’t be on giving the ‘right answer’, but on allowing the patient to express their concerns. If you don’t know the answer to their question, it’s ok to say this; you can refer them to their GP or district nurse for further support.
You might find it helpful to read The Irish Hospice Foundation’s information on dealing with difficult questions, Am I dying? Responding to difficult questions .
The patient may be dealing with strong emotions such as fear, anger or guilt. They might be worried about issues in their relationships with family and friends. It’s also a time when people may think about the meaning of or their purpose in life – thoughts that may be related to spirituality or faith and religion.
The specialist team at your local hospice or specialist palliative care team at the local hospital may be able to provide courses on handling difficult conversations. You could also ask to sit in on a visit from the specialist nurse to observe how they work. They generally use a reflective style. For example, if asked “Am I dying?”, the response might be “What makes you ask that?” Often, the person asking already has the answer, they just want confirmation.
What do I say if the patient asks me about dying?
The first step is to try and understand more about how they are feeling. For example, if someone tells you they’re afraid of dying it’s important to acknowledge that feeling, and ask them to tell you more. You could also try to find out what they think would help address their fears.
Don’t impose your own solutions unless asked. Give the patient time to share their concerns and acknowledge all of them, not just the ones you think you can help with. You may feel that you want to hold the person’s hand or put your arm around them. Remember this may be reassuring for some people, but not for others.
Be honest when you feel you can’t answer a patient’s questions. You can offer to put them in touch with someone who will know more, such as a doctor or specialist nurse for medical issues, or a counsellor or chaplain for emotional or spiritual questions.
The patient doesn’t want to talk about dying. What should I do?
People with a terminal illness may go through periods of denial, which may not necessarily be a conscious decision. Sometimes they may not want to talk about their illness. You should always be guided by the patient, so try not to force them to acknowledge the situation if they aren’t ready to accept the reality of their condition.
Some people may give subtle clues that they are thinking about death, without mentioning it directly. They may say things like, “I don’t know what to do” or “I’m worried”. Try to give a gentle response. Although it may be tempting to give the patient hope, it could be damaging to play along with or encourage denial (this is known as collusion).
If you have difficulties with these types of conversations, talk to another member of the multidisciplinary team such as the patient’s GP, district nurse or a clinical psychologist.
I don’t want to talk about dying. What can I do?
Looking after someone who is dying can be hard to cope with emotionally. So it’s important to look after your own mental health.
Build strategies to help you cope, such as making sure you have breaks from work. If you feel stressed, anxious or upset, you could try talking to your line manager or other colleagues either one to one or through clinical reflection meetings. This can be a good way to offload. You could also speak to an occupational health professional.
It might be a good idea to look into any available communication training, such as a workshop in handling difficult conversations.
If the patient has had a lot of fears or anxieties around death over a long period of time, it might be worth seeing if it’s possible for the two of you to sit down with another professional in your team, for example a specialist palliative care nurse. This will provide both you and the patient with an extra source of support and allow you to see how other professionals communicate with patients in situations like this. If you choose to do this, you should find out whether the patient would like any of their family included in the conversation.
The patient has asked me to help them die. What should I say?
Assisted dying is the act of helping another person end their life. This is against the law in the UK. It is also against the law for an organisation to give out information about how to end life or to give out contact details of other organisations overseas where assisted dying is legal.
Some people may have suicidal thoughts. If so, they may not even use words like ‘suicide’, ‘die’ or ‘death’. They may instead say things like, “I just don’t want to go on.”
Expressing these thoughts does not necessarily mean someone wants to take their own life. However, they should never be dismissed.
If the patient is having thoughts about suicide or assisted dying, try to provide a listening ear and empathy. Where possible, you should provide the patient with information about coping with their feelings, such as our information about dealing with difficult emotions for people who have been diagnosed with a terminal illness.
Finding out more about the choices they can make about their care may also help some people maintain a sense of control. They may find our information on refusing treatment or making an Advance Decision not to attempt CPR helpful.
It’s also important to tell your manager about the issue and notify any relevant colleagues in the multidisciplinary team. If you believe the patient is at imminent risk of suicide you should contact emergency services and stay with the patient.
Points to remember
- Listen and respond sensitively to any questions or concerns that the person may have.
- Acknowledge and respect all of their fears and worries, not just the ones you think you can do something about.
- Prepare well. Try to find out as much as you can about the patient before you see them.
- Be honest, and remember it’s ok to not to know the answer to every question.
- Only give answers you are sure about.
- When you don’t have an answer, talk to colleagues and find out who can help.
- Tell the patient’s GP and notify any relevant colleagues in the multidisciplinary team if you think the patient is at risk.
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