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Good communication and trusting relationships between nurse and patient are vital in delivering the best care for people with less survivable cancers
More than 450 people die from cancer every day in the UK, according to data from the charity Cancer Research UK.
Cancer Nursing Practice. 21, 4, 7-9. doi: 10.7748/cnp.21.4.7.s3
Published: 04 July 2022
Most of these patients will have had care from cancer nurses at some point – during or after the time they are told that their cancer cannot be cured. So what is the best way for nurses to speak to patients with a poor prognosis?
Maggie’s west London centre head and senior cancer nurse Sinead Cope says it is essential to be ‘clear but kind’. Good communication comes from building a trusting relationship with patients, she says.
Patients’ experiences will vary hugely as some people will live for many years with metastatic disease, often with ongoing treatment, while others will have only a short time between diagnosis and death.
There is evidence that some patients are living longer with metastatic disease – one US study suggests there are a growing number of women living with advanced breast cancer, possibly because of improvements in treatment and ageing in the population.
Establishing what a person understands about their illness builds a foundation for other discussions, experts say.
» In the UK, more than 9 0,000 people are diagnosed with one of the less survivable cancers every year, according to the Less Survivable Cancers Taskforce
» These cancers, which include pancreatic, oesophageal, stomach, lung and liver cancers and brain tumours, account for more than 40% of common cancer deaths
» Diagnosis for these conditions often comes late, meaning poor survival prospects for these patients
» Just 7 % of people diagnosed with pancreatic cancer are alive five years after diagnosis, 12% of those with liver cancers, and 19% with brain tumours
‘It can be helpful to try and understand the person you are speaking with, what they know about their illness, and how they view it,’ says Maggie’s west London clinical psychologist Troy Chase. ‘It means you can then have open and honest communication with them.
‘Just asking someone what they understand about their illness, what their doctor has told them, what their treatment options are, can put you on the same page.
‘You want to meet them where they are at – once you have that foundation, it allows a number of other conversations to happen.’
Information for healthcare professionals from Marie Curie suggests the following techniques can help nurses ensure they are understood during an appointment:
» Check what information the person knows already.
» Give small amounts of information at a time.
» Avoid using jargon.
» Avoid euphemisms as these can cause confusion – for example, say ‘dying’ instead of ‘passing away’.
» Avoid explaining things in detail – unless the person asks to know more.
» Check how much they have understood.
» Check how they feel after having the conversation – for example: ‘That was a lot of information, how are you feeling about it?’
Dr Chase adds that using the same terminology as patients can be helpful. ‘Don’t be too blunt and don’t over-medicalise – use their language.’
Being aware of a patient’s body language and seeing if they look anxious – this could be fidgeting, perspiring, biting their lip, breathlessness – can help to guide nurses as they speak.
‘Some patients will speak very quickly, some will just want to get out of the room.
‘It is good to slow them down. The nurse can explain their role, talk about how helpful they can be to that person and appreciate that in this moment the patient might be finding it hard to take in this information.
‘Consider saying “you can reach me on this number”, as a person’s willingness to be available and contactable can be helpful for maintaining and developing communication.’
Flashcards to help parents discuss their cancer diagnosis with their children have been developed by a nurse and her friend.
Nic Owen (pictured left), a respiratory nurse, and Jen Pope (pictured right), a design teacher, met at an event for younger women with secondary breast cancer and discussed how to talk about their diagnosis with their young children.
The available resources did not feel right, says Ms Owen. ‘The story books were very emotive which, given our positive approach to our diagnosis, just didn’t feel right,’ she says.
This led to the bright, colourful Little C Club cards, which provide an A-Z of cancer that offers children simple bite-sized chunks of information, and can be tailored to an individual family’s unique experience.
Ms Owen says: ‘The cards are relevant for any parent or loved one explaining cancer to a young child, whether it be breast cancer, lung cancer, stage 1 or stage 4.
‘As mums with secondary breast cancer, we know our cancer is not going anywhere, so it was particularly important that we presented the information in a way that would allow our children to grow with it.
‘It’s a resource that we can revisit as each card becomes more relevant and a tool that gives us and them the confidence to talk openly, ask questions and create an inclusive dialogue.’
Sometimes nurses may have to support patients after a previous appointment that has not been entirely clear, says Ms Cope.
Some doctors may avoid discussing whether the disease is terminal, giving a patient an unrealistic outlook; others are too harshly blunt, she says.
‘It’s important to be honest, and some medics aren’t that good at it. Then the patient will turn to a nurse that they have a relationship with to try to make sense of it.’
It is important that conversations about the terminal nature of a disease are had, she says.
‘What you don’t want are these conversations left until a time that a palliative care team is introduced.
‘Sometimes a healthcare professional may say that the terminal nature of a patient’s condition has not been discussed, as the patient never mentioned or asked about it.
‘But if you ask the right questions you will get a wealth of knowledge from a patient that shows they have a lot of awareness,’ she says.
Dorset County Hospital gynae-oncology clinical nurse specialist Hilary Maxwell, founder and chief executive of charity GO Girls, which supports women with gynaecological cancers, says honesty is a priority.
‘We have a responsibility to have a duty of candour. It is about being clear from the outset,’ she says.
‘There is a danger that if you give false hope it may cause someone more psychological distress and anger. So we need to be quite explicit, but in a way that is kind and compassionate.’
A patient’s needs, emotions and approach will fluctuate from day to day as they grapple with what they are facing, she says.
Working in partnership with the patient as they make decisions about treatment and other aspects of care is important.
‘The three key words for this communication are honesty, sensitivity and compassion,’ says Ms Maxwell.
‘Cancer nurse specialists are in a privileged position in this person’s life – and their family’s – and we have to be aware that they have a long history before we have ever come into the picture and be mindful of all this nuance.
‘We need to remain professional but personable.’
Marie Curie’s information for healthcare professionals is clear that talking about death is important with a patient who is terminally ill.
It can help patients to express their concerns and fears, and sharing these with another person can help to reduce distress and anxiety.
Patients are given the chance to find out more about their illness and what is going to happen to them, and this may reduce anxiety and help them to make decisions about their treatment and care.
It also gives people time to make decisions about practical issues, including making a will or making funeral plans, which can help them feel more in control and helps those important to them.
Patients may ask how long they have to live, but often there is not a clear answer as there are many factors in play.
‘It is rare that an oncologist will give a clear time frame, and the reality is we don’t know,’ says Ms Cope.
‘This response can be frustrating for people. Sometimes a doctor will say something like they expect it to be many months, rather than many years. Some patients absolutely insist on a time frame.’
Again, an individualised approach is needed here, Ms Cope says, as well as developing a trusting rapport with people.
Using this question as a springboard to discuss someone’s concerns may bring up issues that a nurse can help with, she says. It could lead to a conversation about treatment options, pain relief or the need for extra support.
Research has suggested that having hope can help to heighten quality of life for terminally ill patients, with a Brazilian study suggesting that terminally ill patients with higher levels of hope were more resilient.
Approaching conversations about dying
» Talking to someone with a terminal illness about dying can help them to express their concerns and fears, and make plans for what is important to them
» Talking about dying can be difficult, but there are things you can do to help make the conversation more meaningful for your patient
» If someone does not want to talk about dying, do not force them but let them know that they can talk to you later if they change their mind
» Be honest if you do not know something – you can try to find out and tell them later or ask a colleague for help
» Talking about dying can be challenging for healthcare professionals. Find out where to get support if you need it
Using the right body language
» If possible, sit at the same level as the person – if they are in bed, sit in a chair next to them rather than standing over them
» Remove any barriers between you. Don’t sit at opposite sides of a table
» Use open postures – for example, rest your hands on your thighs rather than crossing your arms
» Give them your full attention
» Nodding and leaning towards them can show that you are listening
» You can be warm and smile, but remember that you are discussing serious issues
Source: Marie Curie 2022
A Canadian study found that hope changes over time, and evolves in various ways depending on circumstances.
Patients may have hope for prolonged life when there is no further hope for cure or hope for a good quality of life when the possibility of prolonging life becomes limited.
‘Clinicians need to maintain some degree of hope while remaining as realistic as possible,’ researchers said.
Nurses agreed that, again, honesty is fundamental in these conversations. Ms Cope says: ‘It is about balancing hope with honesty.’
For someone with a poor prognosis, ‘there is hope that a new treatment may be found or your symptoms well controlled’, she adds.
‘Avoid trite statements such as, ‘At least it’s a beautiful day,’ Ms Maxwell says.
Nurses should also maintain the space for a patient to speak about their distress, she adds.
‘It is about being human, and making sure we listen extremely carefully and not look to soothe our own soul. We have to hear their anguish.’
Such conversations can be hard for the nurse as well as the patient. ‘We must acknowledge that we have these emotions, and not try and cover them up,’ says Ms Maxwell.
‘These conversations are exhausting and it is important that we, as nurses, recharge so that we never lose sight of what someone else might be going through.’
Cancer Research UK www.cancerresearchuk.org
Go Girls www.gogirlssupport.org
Less Survivable Cancers Taskforce lesssurvivablecancers.org.uk/the-less-survivable-cancers
Marie Curie www.mariecurie.org.uk
Marie Curie (2022) Talking to Someone About Dying. tinyurl.com/MC-talk-about-dying
Sue Ryder www.sueryder.org