What to say, how to say it and where to find help.

It’s not always easy to know how to talk about dying. Awkwardness, embarrassment and fear means we tend to shy away from connecting with those who are dying or those who are grieving. But when we don’t talk about what matters it can increase feelings of isolation, loneliness and distress. Here is some practical guidance, information and resources on: how to say goodbye; the importance of good listening skills; and what the dying may experience as death approaches. There is also guidance on ways to offer spiritual support.

Fear of talking

It’s not only relatives and friends who might find it difficult to talk about what’s happening. The dying themselves often find it very hard to express what they are feeling or what they would like.

Why relatives and friends won’t talk about dying

Many people are afraid of saying the wrong thing or making matters worse. It is usually better to say something rather than nothing. At least it gets the conversation started.

People are afraid of loss and talking to the one who is dying means that you have to face your own feelings of loss that will be inevitable when the time comes.

Talking means facing the truth. Once it is out in the open you can’t pretend that it is not there or it isn’t going to happen.

Many are afraid of what others might think or say about them. People are often judgmental but you need to do what is best for your loved one regardless of what others think or say.

Some think that the conversation should be left to professionals as they ‘know best’. Very often the best one to address such intimate and personal issues is the one who is closest and can really understand how the loved one feels.

Facing the fact that a loved one is going to die and talking to them about it means that you have to face up to your own mortality. One day you are going to be in the same position as them.

Like the ostrich who buries his head in the sand you may want to pretend that everything is going to be all right if you just ignore it.

Why people who are dying won’t talk about it

There are also quite a few reasons why the one who is dying might not want to talk about what is going to happen.

They often don’t want to be a burden to their family or friends. They feel that if they carry the burden alone they are somehow making it easier for others to cope with the inevitable.

There may not be somewhere private where the conversation can be started. This is particularly the case in a hospital or care facility where they are sharing a room and there is very limited access to a private area.

They themselves may be in denial and do not want to face the truth of what is happening to them.

The last thing they want is to upset those that they love. Often they think that the conversation will be too upsetting and they want to protect their loved ones from emotional turmoil.

Some people just do not know how to share their feelings. They have lived their whole lives without doing so and they are not about to start now.

Trust is essential when talking about such an intimate and personal matter and they do not know whom they can really trust.

The most important thing is not to push anyone into talking if they don’t want to. Just make sure they know you are willing to listen if and when the time is right.

How to open up difficult conversations

People who are dying usually know what is happening to them. Nevertheless, when a dying person believes relatives and friends can’t cope with the truth, it can be hard for them to talk about what they’re experiencing or ask for what they want or need. This can leave them feeling isolated and lonely, not knowing how to reach out or say goodbye.

So, how can a meaningful conversation happen?

A dying person might sometimes help indirectly by throwing out ‘tester questions’ to check if you are willing to engage with them. They might, for example, ask you, ‘What do you think happens to you after you die?’ They might ask if you think there is life after death. They might ask, ‘Do you think God really exists?’.

On the other hand, you yourself may want to broach the subject of death with your relative or friend, but don’t quite know how, especially if death has never been mentioned before. One of the easiest ways of opening up the subject is to ask your relative or friend who they would like you to contact if they became very seriously ill. This conveys that you know they may not recover and are willing to talk about it. It also gives them the space to decide whether or not to respond.

If you don’t feel quite ready to have this kind of conversation and you’re in a hospital, hospice or care home setting, talk with the nursing staff so they can offer appropriate support.

Spiritual support

Spiritual care at the end of life is now recognized as part of good palliative care. Many people die without a religious or spiritual belief and this must be respected. But research shows that the nearer we come to the end of life, the more questions can arise about the meaning and purpose of our existence.

Don’t be afraid to knock on the hospital chaplain’s door. They are there to provide help and support whether it’s for your dying relative, or you need to talk about things that are distressing you. You can also ask for pastoral support to be organized for the dying person by hospice and care-home staff. Chaplains will arrange for prayers to be said, and last rites to be administered if the dying person is a Christian. They will also arrange for other faith ministers, priests or rabbis to visit or talk with the dying person.

How to listen well

Stay calm: you may also feel embarrassed by this kind of emotional intimacy, or fearful of seeing your relative or friend cry or become helpless and vulnerable. Breathe slowly to calm yourself.

The most important gift you can give to a dying person is to listen. Here are a few golden rules of good listening which can help you open up communication:

Be respectful: none of us truly knows what is going to happen after death, whatever our religious or spiritual beliefs. So it’s important not to force our viewpoint onto the person. This is their experience.

Be honest: often in difficult situations we tend to search for the ‘right’ or clever thing to say. Or we deny what’s happening, or make a joke of it. While such reactions are very understandable – humor has an important place too, even in death – dying is a profound process that just needs us to be there, and perhaps hold a hand. The act of sharing ourselves openly and honestly can be very liberating and soothing for the dying person.

Use engaged body language: don’t be afraid to look your relative or friend in the eye. Be alert and attentive to what they are telling you, and the way they are saying it. Listen to their tone of voice and be aware of changes to their facial color; their willingness to engage with you; their willingness to meet your eyes.

Watch their body language: is what they are saying really what they mean? Are they asking you something with their body language that they are not expressing with words? If so, invite them to tell you what they really want to say.

Keep grounded: ground yourself by physically feeling your feet firmly on the floor. This will help you to be present and accepting of what is happening.

Try leading questions: you can also gently ask leading questions to find out how they are feeling, such as, ‘If you become really ill, would you like me to sit with you?’ or ‘If you become ill, what medical care would you like?’ or ‘Have you ever thought about what you want to do with your belongings?’ or ‘Have you thought about what kind of service you would like at your funeral?’ Again, this provides the dying person with the choice to respond or not.

Try indirect questions, such as ‘I wonder whether there’s anything you want to talk to me about?’ or ‘Perhaps there’s something bothering you which you want to tell me about?’ or ‘What can I do to help you at the moment?’ This gives your relative or friend the choice to respond, or to say no. Providing choice is empowering. They may decline initially, but will know the door is open if they want to talk about it later. Indirect, exploring questions give the signal that you are safe to talk to, and that you care.

Use short statements: these can also provide comfort. You might say, ‘If there ever comes a time when you want to talk about something or you feel frightened, please do tell me’. This gives your relative or friend permission to talk in his or her own time, without expectation.

Don’t fear tears: it’s okay to cry; crying is a natural response to emotionally charged situations. Being brave enough to express your grief can have a powerful healing effect on your relationship, as well as giving your relative or friend permission to grieve for the life he or she is leaving behind.

Be quiet! Don’t feel you have to talk all the time. Just being there quietly at the bedside is important, and can often be surprisingly peaceful.