Talking about dying: tips and reflections

We’re really pleased that you’re reading this page. Because by doing so, you’re finding out about why it’s important to have honest, timely conversations about dying – and you can help others, too.

You may be here after taking our ‘Talking Matters’ quiz, where you guessed how 1,000 recently bereaved people felt about the language used around death and dying during their experience of a loved one dying.

If you haven't, then feel free to take the quiz now, and then return to this page, if you’d like! (warning: there are spoilers on this page)

To help process what the quiz results are telling us, we enlisted the help of Dr. Lucy Pain, Palliative Care Consultant at North London Hospice. She shares her reflections on the results, along with stories and learnings from her years working with patients at the end of their life, and their families.

She’s also written some tips for you on how to talk about death and dying with healthcare professionals, and family members. These will help empower you to have those challenging conversations when you need to.

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We asked 1,000 recently bereaved people whether healthcare professionals clearly told them that their loved one was likely to die.

• 41% of respondents said that healthcare professionals were very clear their loved one was going to die.
• 27% said they were somewhat clear, but were left with some uncertainty about the likelihood of them dying. 
• 9% said they were not clear and they didn't understand that this was what they meant.

Dr Lucy Pain reflects:

“It’s reassuring that people usually come away from these difficult conversations with a reasonable understanding that their loved one is likely to die. 

Ideally conversations about prognosis take place a number of times between diagnosis with an incurable illness and death, with plenty of opportunity for questions to be asked. 

Unfortunately, it’s often difficult for health professionals to give an accurate prognosis and some of the respondents’ uncertainty may reflect this. 

But, discussing death and dying is a key skill that all health professionals should receive training in.”

We then asked our bereaved people whether their healthcare professional explained to them that their loved one was dying at the right time.

• 34% of respondents said health professionals shared clear information with them at the right time. Many people said this made it easier to talk about death and plan for the end of life.
• 9% said that they did not clearly explain early enough, by which point they had figured it out themselves, or were optimistic about their prognosis. 
• 11% also agreed that not being told early enough, which left them confused about what was happening.

Dr Lucy Pain reflects:

“It can be difficult for health professionals to know what individual people want to know and when, everybody is different and sometimes members of one family have different needs. 

There is often anxiety from both family members and health professionals about causing harm by taking away hope. 

In fact, giving false hope can be more damaging by taking away the opportunity to plan and make the most from the precious remaining time. 

Respondents mentioned how upsetting it was being given ‘false hope’ or information having been ‘sugar coated’.”

We asked what type of language they would prefer health care professionals use to talk about terminal diagnoses and dying.

• 33% of people said that they would prefer euphemistic language. 
• 45% of people said that they would prefer direct language like ‘dying’, or ‘died’. 
• 21% said that they were unsure, or had no preference.

Dr Lucy Pain reflects:

"Hearing really bad news, for example that you have an incurable illness, is always going to be incredibly painful. 

It’s notoriously difficult to absorb complicated information when being given bad news, so health professionals try to ensure the information they give is clear and concise. 

Nobody wants to come away from a serious conversation having misunderstood what they were being told. 

For these reasons, when health professionals need to share a very important message, they try to use very clear language delivered with compassion and kindness."

We asked how well healthcare professionals interacted with them during the final period of their loved one’s life.

• 62% of people said that they thought healthcare professionals interacted very well, or quite well, with their loved one, them and their family. 
• 21% of people said that they felt the communication was ‘average’. 
• 10% said it was ‘quite poor’ or ‘very poor’.

Dr Lucy Pain reflects:

"Developing relationships with my patients and their family or friends gives me huge pleasure. It’s such a privilege to support people through these difficult and very personal times. 

Everyone has their own individual communication style and preferences which lead to variation in all relationships, including those with health professionals. 

Events like Dying Matters Awareness Week are a great opportunity to promote communication skills to health professionals, in addition to empowering people to be more open with friends, family, colleagues and clinicians."

We asked whether our respondents thought the Covid-19 pandemic had changed how they prefer to talk about death and dying.

• 19% of people said that, after the pandemic, they now prefer to use more direct language about death and dying. 
• 14% of people said they now prefer euphemistic language. 
• 43% said that it’s made no difference either way.

Dr Lucy Pain reflects:

"The Covid-19 pandemic has changed so many aspects of life forever. So many families experienced tragic losses and had traumatic experiences. 

Because of the huge number of deaths, almost all health professionals had to become much more familiar with caring for dying people and talking about death and dying. 

As with most things, everyone is different. The language families and friends use about death and dying has usually been passed on from generation to generation. 

Although many people became more accustomed to talking about death and dying during the pandemic, I’m not surprised that it didn’t have a huge impact on the language used by individuals outside of healthcare."

We asked people to tell us about their experiences and views on discussing care at the end of life with professionals. Here are some of their comments: 

• “Healthcare professionals were amazing from start to finish.” 
• “They told us when they knew. They did it in a professional way which supported the family and their time scales matched.” 
• “They said “palliative care is all we can provide.” I know what that means, but I suppose a lot of people wouldn’t.” 
• “Information was given which often proved incorrect or sugar coated, they made it look better than it was.” 
• “No one really ever said it to me – they just assumed it was obvious, I think.” 
• “Healthcare professionals talk in a different lingo with big confusing words that make you more upset and not understanding what is being said or happening.” 
• “It’s easy to get caught up in healthcare terminology that nobody understands…being direct eliminates doubt.” 
• “I like this softer side, it’s a delicate time. I know they need to keep professional, but these softener words are nicer to deal with.”

Dr Lucy Pain reflects:

"I’m so grateful to the respondents for sharing their valuable experiences. It’s no surprise to see that although there is some positive feedback there is always room for improvement. 

I notice that although some people prefer ‘softer’ language, others share their distress when information about prognosis and end of life care hasn’t been shared clearly. For this reason, I encourage professionals to use clear language, delivered with kindness and compassion. 

It’s also vitally important that we ask people what they want to know and when, but professionals won’t always get it right so will always be grateful for questions. 

Nobody should ever feel embarrassed about asking for more information or clarity – if you haven’t understood it then the professional hasn’t explained it well enough. 

Don’t forget that professionals can only realistically share important information with their patient and one or two key family members, who would generally be expected to share this information with anyone else who needs to know. 

Sharing bad news with friends and family can be difficult. If you aren’t sure how to tackle these conversations, the professionals caring for you will be happy to offer advice and support."