Trial project helps patients with lung cancer to plan ahead for the future

Patients with lung cancer are being encouraged by nurse specialists at Musgrove Park and Yeovil hospitals to start thinking about the future while they’re in good health.

Our lung cancer teams at MPH and YDH each have three nurses, a cancer support worker, cancer navigator, and a coordinator, and the team works closely with our respiratory and oncology consultants, as well as specialist surgeons in Bristol.

Most of the patients seen by the team are referred by their GP urgently with suspicion of lung cancer, and our specialist nurses support the patient through their investigations, diagnosis, treatment, and after treatment.

Angie Yarde, our lead lung cancer clinical nurse specialist at MPH, says: “The prognosis for our lung cancer patients is not always good, sadly, so it’s vital that they start thinking about their future care as soon as possible, rather than leaving it until they’re too unwell.

“When we were contacted by Miss Jo Morrison, a consultant gynae-oncologist and the co-chair of a trust-wide group set up to discuss end-of-life care, to become involved in a project that aims to solve this very issue, we jumped at the chance.

“A letter was carefully designed, which we sought feedback from a number of community ‘Death Cafés’, and trialled giving this to patients, alongside a conversation about advance care planning.

“I feel that it’s really important that patients aren’t just sent an impersonal letter about whether they’ve thought about the future. It’s much better to use those in-person or telephone conversations we have with them on a regular basis, as an opportunity to talk about what can be difficult subject.

“There are so many things included in the letter that people just don’t always think about, not just the bigger things like funerals and wills, but also the smaller practical things like computer passwords.

“Along with the letter we give out two patient information leaflets, one with a link to Marie Curie, which supports patients to work through their wishes, and the other is the Somerset Advance Care Planning document, which talks more about the power of attorney and how it works.”

The team set about introducing this new approach on a trial basis, involving patients and their next of kin every step of the way.

“During the trial we did a follow-up call with the patients a couple of weeks after they had the letter,” Angie continues.

“We asked them questions about the letter and information they had received, which included: i) whether it prompted them to take action; ii) whether they’ve had conversations with their family; iii) what they like about it, and what we can do better; iv) whether there’s anything else they wanted to add or to know about.

“A lot of patients can get really anxious even thinking and talking about the future, and that’s very much the starting point of what we’re trying to achieve.

“I think the beauty of this letter is that it can reduce the anxiety for the patient, because once you’ve thought about it and written it down, and let your loved ones know, then it’s no longer something you need to worry about.

“When people are ill and coming towards the end of their life, it’s something they probably don’t want to think about at that point, and it’s so much better to have dealt with it early before it reaches that stage as it’s less stressful.

“Much of the feedback we had about whether they liked it included feeling that it’s nice to know that they could talk about advance care planning. Others said that it encouraged them to start thinking about things.

“And since we began the trial, our Yeovil Hospital lung cancer nurse colleagues have also become involved, and it’s being extended to other specialities too.”

Lottie Garland, our lead lung cancer clinical nurse specialist at Yeovil Hospital, adds: “We’re grateful to our nursing colleagues at MPH for sharing their experience from the initial trial.

“We believe the most powerful impact of this information was encouraging an open conversation between loved ones. Sharing their thoughts and wishes, whilst sometimes difficult, is often accompanied by great relief and being able to move forward.

“At Yeovil Hospital we took part in the ‘patient feedback’ part of the trial, where patients who were further on from initial diagnosis told us they would have benefited from having this information sooner.

“During the trial we noticed the timing of this information at initial diagnosis was overwhelming for some patients, but despite this, we recognise that we shouldn’t delay in providing this information.

“By delivering it with a sensitive approach, it allows the thought process to begin, in the knowledge that any wishes made can be changed.

“As a lung cancer nurse specialist, it’s helpful to have such comprehensive user-friendly written information to give to the patient and those who matter to them, with reliable support and useful website links.

“We recognise we are in the early stages of providing this information, but know with time and experience, this important service will greatly enhance patients and their loved ones’ quality of life beyond the diagnosis.”

Miss Jo Morrison adds: “This project first came about because there we were starting to see a rise in the number of people requesting emergency weddings, with our colleagues being asked to witness wills when people were extremely unwell.

“These have major legal and family implications, especially if done in a hurry when someone might not be well enough to consent to these major life events.

“In certain circumstances, it was too late to be able to arrange things because the person was too unwell to do so, which was upsetting for everyone involved.

“We wanted to help signpost people to things we are all really good at putting off and all should have in place, whether we have a life-limiting illness, or not – sadly, none of us knows what lies around the corner.

“This was something I was really passionate about, having seen the real and long-term damage that a lack of power of attorney, wills made before marriage which were no longer valid, out-of-date wills where circumstances had changed over 50 years, and dying without a will (intestate) has caused to those in my own family and to close friends.

“Helping people to leave their affairs in good order is a kindness to those they leave behind and can help the bereavement process.

“It was interesting that the major feedback we had was that 'I wish I’d had this earlier' which encouraged our lung cancer nurse specialist team to be braver and have these important conversations earlier in someone’s illness."