Dr. Lucy Pain: why the way we talk about Dying Matters

It's never easy to talk to somebody about dying, but it's definitely something that you can gain skills in and gain confidence in over time. 

I think it comes relatively naturally to me because I enjoy talking to people and I hope that I engage with people relatively easily. But when conversations are potentially upsetting, there are certain things you can do that make that easier, both for the person you're talking to and for yourself. 

There are specific words and phrases you can learn which really help to communicate this sort of information in a way that is easy to understand.

In the context of palliative care, these conversations are often easier than in some other settings. That’s because when I meet people, they already know they have a life-limiting illness and they usually know they're quite close to the end of their life. So it's rare that I'm giving them totally new information. 

Although in any setting, I find that people who are ill generally have quite a good awareness of themselves and of their health. 

What I find makes it much easier for both parties is to explore people's own perception of their health – how they think things are going and what they think the future is likely to hold. And almost always they're correct. 

So I often don't have to tell them very much at all, and I can usually just agree with them and say that I share their worries and maybe give them a bit more depth about detail in relation to their health. 

On the whole, people can have pretty good self-awareness of their health and what the future is likely to hold.

I think giving people truthful information is extremely important in any setting, but especially healthcare. 

People notice when you're not being completely truthful and trying to hide something from them. And they won't always have the confidence to unpick that and ask you more about it. 

But I think the key is to ask people what they want to know, how much they want to know, how honest they want you to be with them, and then that guides you. 

If somebody says, ‘I'm really afraid, I don't want to know anything bad, I just want to focus on today,’ that's totally fine. 

If they say, ‘I think I'm really ill and I think I'm going to die in the next few weeks, do you think that's right?’ then it's much easier to plan for the future.

So I think as long as you've asked somebody what they want to know and how honest you want them to be, you can't go far wrong.

In my experience, it's usually harder and more upsetting talking to the family and friends of somebody who's dying than it is talking to the person themselves. Usually, people who are dying are actually quite aware of that and more comfortable talking about it than people might expect. 

What I observe is that often the family and friends of people who are dying find the whole process much more upsetting than the person who's dying themselves. So conversations about the future are usually (but not always) less distressing with the person who's dying.

The big difference between Palliative Care and other medical specialties is, of course, we know that our patients have an incurable illness and probably have a relatively short time to live. 

So it's impossible for the whole focus to be on prolonging life and medical interventions. You know that time is relatively short, and every day counts. You can't really avoid exploring that with your patients and their families, discussing how we're going to make the best of this time. And often that isn't medicine and interventions, that's usually other things.

Everybody's different. And in palliative care, that's particularly noticeable because of the way in which people choose to live their lives.

When people have a shorter time to live, every day counts. And the way in which they want to spend that time and the things that feel important to them are different. 

It's not for me to decide what matters for my patients. I have to ask them, I can't guess. So those conversations about what are the priorities, how can I help them, where do they want to be cared for? Those are really important.

I think there are obstacles to having good quality conversations from a variety of directions. Every person involved in those conversations has a role to play and can cause obstacles or make the conversations easier, starting with the healthcare professionals. 

Lacking confidence

Definitely some people lack confidence and feel anxious about having these conversations. 

Taking away hope

Something many people seem to worry about is taking away hope. I think this affects professionals, and often the friends and family of people who are dying. 

They worry that if they tell the truth and for example tell them that time is short, that person might lose hope and then they might have a worse quality of life, or die sooner. And that can be really difficult. 

Giving false hope

Sometimes professionals feel anxious about taking away hope and therefore try to be optimistic, which isn't always helpful in the long run. 

In my experience, and from talking to people who are living with incurable illness, actually giving false hope is much worse than telling the truth. If you give false hope, they might not have the opportunity to have that important conversation with someone or make plans they wanted to make. 

They might not do things they wanted to do because they didn't know that time was short.

And it’s all the more disappointing when they get really ill and the truth can’t be avoided any longer.

Causing fear

I think sometimes people are aware that those around them aren't telling them the whole truth. And I think that's scary. It causes fear. 

Different people having different needs

I think also that sometimes loved ones can try to inhibit those conversations. It's not unusual that friends and family say to me, please don't tell them the truth. Just recently I started trying to talk about the future with a patient and they just said 'No!' and stopped the conversation. So, in that situation, it's really important to try and separate people out. 

Then I can understand the different needs people have: the needs of the person who's dying, and the needs of their family, who might want to know different information. 

Not wanting to know

Of course, some people don't want to discuss the future and hear what it's likely to hold, and that's fine. 

I always try to explain, we have to make some decisions or plans for the future together, and you will need information to make those plans. So I try to balance it by explaining what information might help them to make a decision and then it's up to them if they want that information or not. 

They might choose to delegate decision-making to other people close to them and the professionals caring for them.

I've given a lot of thought recently as to why people are afraid of talking about death and of death itself. And I think you can break it down into a few rough areas. 

I think there's obviously fear about the thing we can't know about, which is what it's like to be dead. And no one can answer that question. 

And obviously there's fear from uncertainty. 

But actually a lot of what people worry about when you ask them – and I do ask people often – what exactly are you worried about, or is there anything particular that you're worried about? There are specific things. 

People often worry about what it might be like to die and how they will feel in the days or weeks before their death. And at the moment of death, and what symptoms they might get. Who's going to care for them? Will they be comfortable? 

What mostly seems to worry people is what will happen to their family. And often the practical things: what will happen to their house, to their property, who's going to look after their cat. 

And so usually, once you start unpicking what they are actually specifically worried about, usually much of it is about quite practical things that I can tell them about and help them with. 

I reassure people that we can control their symptoms. And actually, those aren't necessarily going to get any worse. I can describe the care available and that we can support them with personal affairs.

I think it would be interesting to ask the general public: what are you specifically afraid of when you think about dying?

The best words to use when talking about death and dying depend on the situation and the individual person.

Depending on the conversation you're having, the language you use can vary. If you need to tell somebody a very clear message, like perhaps somebody has died, or you think they're going to die in the next day or so, then it's important to use that word because you don't want any uncertainty. 

But if you're comforting someone and you've already conveyed that important fact, of course, then you can use other words like passing on, or late. 

And if you need to tell somebody a fact, then you may need to use those words like die and dying. 

But if you're comforting someone, I think it's okay to use more gentle language and use the words that they use. For example, a friend of mine refers to her late brother - so I do the same when I talk about her brother.

When people who are living with incurable illness start expressing worries for the future or mention the fact they might be dying, I see people, both professionals and their friends and family, trying to avoid that conversation and reassuring them. 

They say things like, ‘oh, but you're doing so well at the moment’, or ‘let's focus on the good things.’ And I feel that really disempowers the person who's trying to express something. They want to explore those worries. 

And actually, if you explore them, you might be able to allay their fears. You might be able to make them feel better. But all too often, people avoid the conversation and don't take those cues. So I'd really hope that Dying Matters Awareness Week will help people to take those opportunities to dive into a conversation.

Often people worry about causing sadness, and the truth is, if you're living with incurable illness or someone you love is living with incurable illness, you feel sad all the time. So talking about it doesn't cause that. The conversation might allow people to show their emotions more visibly, which can be uncomfortable to the person they're talking to, but you're not going to cause the underlying feeling.

That can be the same with bereavement. When somebody's grieving, nobody wants to talk to them about it, because they think, ‘oh, I don't want to upset them.’ They don’t realise that they're upset all the time, and that sharing those emotions helps.

During somebody's journey with incurable illness, they usually have multiple conversations, at different stages, about what the future is likely to hold. 

There isn't necessarily one big conversation of, ‘you are dying now.’ 

There's usually one where you are being told that you have an incurable illness. 

And then at some point, there'll be a conversation, perhaps, about treatment stopping, and that there's nothing further we can do to prolong life from this condition. 

Then there might be a conversation about time is now shorter.

Eventually there'll be a conversation that perhaps we’re in the last days. And those conversations particularly will be guided by what people want to know. 

So, it's not as intimidating as it might seem, because actually these conversations happen gradually over a period of time. You don't necessarily have to have one big discussion about everything.

In order for somebody to really make the best of the last part of their life, you need to explore and understand what their goals and values are. 

When people feel uncertain after conversations with health professionals, sometimes that might just reflect the fact that the professional is uncertain. 

And there's good evidence that we're not always very good at anticipating prognoses and it's difficult for us to be accurate. 

We might not always be able to give very precise information, and people always want that. They often will say, is it going to be today, tomorrow, the next day? I just don't know. There's no way of anticipating that. 

So, I think often when people come away from conversations feeling uncertain, it may just reflect the uncertainty of the professionals about what the future will hold

When people ask me about what the future is likely to hold, I always have to caveat it and say, I can't be sure, but I can say roughly. And we can usually work through together and figure out together some idea of what the future is likely to hold. 

The way that I deal with that uncertainty and try to support people through the uncertainty is by reassuring them. 

We reassure people that we'll be there with them, we're going to be caring for them, we're going to be addressing their symptoms and any problems they have. Really, just that we're there by their side, supporting them through it, and that we understand it's difficult.

Talking honestly is the best way to help someone live the last part of their life on their own terms. So that's why the way we talk about dying matters.