Rebecca Langley was just 30 when she was diagnosed with stage three bowel cancer in 2017, needing surgery to remove her colon and four tumours.
But a severe reaction to the chemotherapy, given six weeks after the surgery, led to Rebecca having two seizures and a series of four cardiac arrests, landing her in intensive care for seven days fighting for her life.
Though she’d enjoyed four and a half years with what doctors call ‘No Evidence of Disease’, at Christmas 2021, she had another cancer scare (fortunately a false alarm). This confirmed her wishes for future treatment should be set out as part of a process called ReSPECT.
As a result of having CPR during her four cardiac arrests, Rebecca suffered four fractured ribs, a fractured sternum and three fractured vertebrae.
‘There was a time when the pain had started to become overwhelming and although I didn’t want to die, I wished I didn’t exist. I don’t think I’ll ever get over that trauma.’
She is now helping the charity Resuscitation Council UK (RCUK) campaign for more people to take control of their healthcare choices, particularly when it comes to emergency care and treatment.
She carries a copy of RCUK’s ReSPECT form everywhere she goes. This form, based on conversations with a clinician, allows people to express what is important to them in the event of a future emergency, when they may not be able to speak for themselves. It also helps those close to the person to know what they want should they chose to share the information with others. Most importantly for Rebecca, it allows an individual to mark on a spectrum how much they would want life sustaining treatment, over their comfort being prioritised.
‘I love being able to choose along a scale of how much treatment I would want. My priority is comfort, and quality of life, over life-sustaining treatment.
‘I love the fact that it has a summary of my medical history what’s important to me, and something about care preferences on the back.
‘One acquaintance put on hers, “the patient would like to be near the window if possible so they can tell the difference between night and day.” which I thought was really nice. The ReSPECT form allows you to give a summary of what you value most and what you want to avoid.
‘As a society we need to get better at talking about these sorts of things and healthcare staff need to get better at bringing them up in medical settings.’
She hopes to encourage more medical staff who struggle to start such conversations, to try to engage more in this sort of conversation. ‘I have a friend with stage four cancer. No one has sat with her and talked about end-of-life care. The fear of talking about this, is as prevalent amongst healthcare professionals, as it is with the public. When recently talking to nursing students, I mentioned that they are with patients 12 hours a day; find out what they want and be their advocates. They need you to speak for them.’
The best thing we can all do, according to Rebecca, is plan ahead. ‘Whatever your choices are, write them down. By the time you’re in an emergency it’s too late, you probably won’t be able to say what you want.’
Though she has stated as part of the ReSPECT process that she does not want CPR again, even to save her life, she remains grateful for being given a second chance. ‘When I was in intensive care I dreamt of being able to walk or jog 5km within a year,’ Rebecca says. ‘I weighed only 42 kilos and was dependent on machines and medical staff to keep me alive. I was in so much pain, and so weak, I thought that was too adventurous. But I got back to running and did a half marathon within 18 months of leaving hospital. Now I’m just trying to live as normal a life as possible.’
Talk to your GP about having a conversation about what is important to you and complete a summary of this on a ReSPECT form.
Notes for editors
Sudden death from a cardiac arrest is one of the leading causes of death in the UK and cardiac arrest can strike anyone, at anytime, anywhere.
There are around 30,000 out-of-hospital cardiac arrests in the UK per year, treated by the ambulance service, and only 1 in 10 people who have one will survive.
Resuscitation Council UK is the UK-wide charity whose purpose is to save lives through effective, appropriate resuscitation for all.
RCUK is leading the development and UK wide implementation of ReSPECT, an emergency care and treatment planning process for patients and health and care professionals to discuss and record agreed recommendations for care and treatment in a future medical emergency. It includes but is not limited to recommendations about CPR, and is designed to be applicable for all patients whatever their age and circumstance and in all care settings, from hospitals to hospices to community and ambulance services. Most of all, it is designed to encourage an informed and open conversation between patients and their health and care professionals ensuring that realistic recommendations for a future emergency reflect what is important to a person as much as possible.