Conversations around death – the last taboo

14th May 2021

FEAR, awkwardness and embarrassment…just a few of the reasons we tend to shy away from connecting with those who are dying or grieving. But avoiding the big conversations that matter can increase feelings of isolation, loneliness and distress. It’s not only relatives and friends who might find it difficult to talk about what’s happening; often those dying find it very hard to express what they are feeling or what they would like.

Reasons relatives and friends won’t talk about it may include:

• Fear of saying the wrong thing and making matters worse
• Fear of loss
• Cure collusion (refusing to face the truth, or pretending everything’s all right) with relatives, doctors and carers
• Fear of what other relatives might say
• The notion that professionals know best, so nothing is addressed
• Fear of own mortality
• Guilt/shame about what has happened in the past
• Denial – I can’t face the truth of what’s happening

People who are dying may not talk about it because of:

• Fear of being burden to family and friends
• Lack of privacy, particularly in hospital wards
• Inner conflict and unfinished business
• They may be clinging onto hope for a miracle cure

• They may feel as if they have wasted their life and are grieving missed opportunities
• They may be desperate to die.

• They may want to make contact with ex-partners or estranged family or friends.
• They may want to confess to things that have happened in the past, or to ask for forgiveness. This can be painful and upsetting for relatives, but it can also be powerfully healing
• They may also become irrationally angry, blaming and resentful towards you, or the medical and nursing staff, or the world at large.
• They may be missing relatives and friends who are unable to be with them
• Fractured, strife-ridden families
• Secrets that have never been shared
• Denial – I don’t want to face the truth
• Fear of upsetting relatives
• Never been a talker, and don’t want to start now
• Trusting the right person (a dying person may choose who they want to talk to, and this might not be a relative, trained nurse or doctor).

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.

Saying goodbye

Of course, dying people need appropriate physical pain control. But they also have what might be termed ‘soul needs’ – to feel heard, cared for, connected and emotionally safe. Dying people want to be understood and accepted like anyone else. Some people are fortunate in being able to approach their dying process at peace with themselves and with those they love. But that’s not always the case. People can be frightened, confused, unable to express what they’re feeling or what they need.

• They may be afraid to die
• They may feel they’re a burden to their friends, family or society
• They may be raging at the thought of being cheated of life
• They may feel lost and alone, and desperate for someone to ask how they truly feel
• They may feel angry and let down by their god.

lf your relative or friend is becoming anxious or upset and you feel unable to deal with it, do talk to the nursing staff. The person may not be able to tell you exactly what’s going on for them. Indeed, they may find it difficult to understand themselves. But they may be willing to talk to a nurse, pastoral carer, volunteer visitor, or particular friend.

Do your best to be there for the person who is dying, in any way that you can, but make sure you take care of yourself too. You may feel okay about being alone with the dying person. You may want and need company. But be aware that some close family members may find the thought of sitting with their dying relative too upsetting.

Saying goodbye in person is an important process for everyone. With gentle encouragement and support, anxious or frightened relatives can often overcome their alarm and find comfort in having done so.

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.

How to listen well

• While we know that face-to-face events may not be happening for a while yet, it is more important than ever for us to talk about death, dying and bereavement. You can still host zoom events, or if you wish, events in a safe and socially distant way
• This year, the week will focus on the importance of being in a good place to die
• Where people die is changing. More people than ever are dying at home in recent years, and the pandemic has seen this number leap by tens of thousands
• We have very little evidence about the quality of these deaths, and whether the right care and support was in place
• There is no right or wrong place to die; it will be different for everyone. But it is important for families to think about it, to talk about it and to plan for it.

As Dying Matters Awareness Week draws to a close, let us reflect that what really matters is that you’re creating a space for people to talk about being in a good place to die – physically, emotionally and with the right care in place.