Cumbrian NHS leaders urge people to have difficult conversations

Two leaders of North Cumbria Integrated Care's (NCIC) end of life care team have said that having difficult conversations about what is important to someone and what matters to them as they enter end-of-life care can make a difference to people.

A report included in papers for the September Board of Directors meeting called Learning from Deaths Q1 highlighted that within the NHS there is a need for earlier recognition of patients who are end of life, this is both a national and regional issue.

End of life, in this context, means the last 12 months of a person's life where there will be several indicators in primary care and a hospital setting that they have reached this point.

They will have been admitted to hospital, they'll likely have contact with their GP or nurse practitioner more frequently, and they'll more than likely be known to have a long-term condition.

Elaine Crooks, nursing lead for end of life care, said: "We know nationally that around 75 per cent of the population would say if they were in their last year of life, they'd want to know about it.

"So for us as an organisation, it's looking at that and thinking, 'how do we make sure patient and family wishes are known about?'"

Planning ahead ensures that a patient receives the care that they want and can also make things easier for family when their loved one nears the end of their life.

These are conversations that can be uncomfortable to have and can include whether or not to continue interventions, what the patient's wishes are regarding resuscitation, and if there are certain treatments that they would like to refuse.

The 2005 Handbook of Palliative Care says that recognising a patient is probably dying is perhaps the most important factor in achieving all the factors that we associate with a good death.

Dr Ruth O'Dowd, clinical lead for end of life care, said: "This is about enabling people to have those conversations, consider what treatments they may or may not want to continue with.

"We find it difficult because we tend to be looking for treatments and interventions to make people better. Sometimes what we have to do is recognize that more intervention is not changing the outcome and we need to shift much more in end of life

"We'd like to see those conversations happening earlier about what matters to you as a patient," added Ms Crooks.

"So in clinic settings, and long-term clinics, consultants having those conversations with people.

"But before that actually, as a nurse, I would encourage families to have those conversations."

It's important for someone to discuss more than just practical care options with their loved ones.

People should also be discussing what they would like for an end of life celebration, legal or financial matters, if there is a bucket list they would like to tick off, and the memories that they would like to make with each other.

Having these conversations can just generally can help a person open up emotionally about what they're going through and it can also empower them during a difficult time.

Dr O'Dowd said: "It's giving permission for someone to think about it.

"It's broaching that thing that allows an opening that actually releases a lot of unspoken feelings and thoughts and that is hugely powerful.

"It can make a huge difference to the way things can then move forward because you can talk about what you want, how you want things, what matters, what are the things that you want to prioritise."

Dr Ruth O'Dowd (left) and Elaine Crooks (right) have spoken about the need for conversations to take place to ensure patients can access what they want (Image: NCIC)

It isn't easy to open up conversations around death and dying, particularly if you don't know how someone will react.

But Ms Crooks says that most of the time, people know how they're feeling and it doesn't come as a surprise to them.

The best approach to starting the process of having sensitive conversations is to take it slowly and not jump in straight away with deep, heavy questions. 

"You've got to wait for cues, invites in, some people might not be ready so you just plant a seed," she said.

"There are lots of useful tools and prompts out there. There's some really useful tools that are free of charge on the Marie Curie website that actually takes you through practical things and then moves it to emotive things if somebody is practically focused."

Within NCIC, they have been working on improving the end of life care service in a number of different ways which includes introducing Dr O'Dowd as clinical lead, using nationally recognised resources to help identify when someone is nearing end of life, and having conversations with clinical staff about the difficulty of shifting to end of life care. 

They will also be holding training for staff in December to help them develop their confidence in having emotional conversations with patients about death by working with actors.

As well as this, Ms Crooks and Dr O'Dowd work with partners through the end of life partnership group to ensure patients are receiving a consistent quality of care across the board.

Dr O'Dowd said: "What we're trying to do is reduce the variability in the way we do things, so we know that we do it really really well in some areas and then we know there are other occasions where patients have an experience that's not as good as we would like.

"What we're trying to do is spread what we do in the other areas to reduce the variability and give patients a more consistent experience."

Staff who work with patients receiving end of life care also receive plenty of support from the trust to help them manage the emotional demands of their role. 

There are regular peer support sessions held, debriefs and after-action reviews, bereavement support, and wellbeing hubs at a local and regional level.

Dr O'Dowd and Mrs Crooks are keen to point out that although the job can have an emotional impact on staff members, it can also be very rewarding and a privilege to support people during difficult times.

"I liken it to midwifery, where do you get the experience of those most joyous moments of somebody's life but also those most difficult?" said Ms Crooks.

Dr O'Dowd added: "Whilst it could be really challenging dealing with end of life and having those conversations, at the same time, it can be hugely rewarding if you can open up a conversation to enable someone to think about what's really important to them, and how they want to progress with or perhaps without a treatment, and enabling someone to have a good death."