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A message from our Head of Services, Lizzy Rodgers, about coronavirus/Covid-19 and reports that people with cancer are being asked to agree not to be resuscitated if they become seriously unwell.

Recently we’ve heard from women with ovarian cancer who have been contacted by their GP to discuss what might happen if they became seriously unwell with Covid-19 and needed to be resuscitated. You might have heard about a decision called a DNACPR ('do not attempt cardio pulmonary resuscitation'), or a DNR ('do not resuscitate') and seen that it’s been high on the news agenda. Conversations about resuscitation and what happens at the end of someone’s life can be really hard to deal with at any time, but with the ongoing situation with Covid-19 these conversations may feel particularly pressured and upsetting.

Target Ovarian Cancer firmly believes that decisions made about treatment must be made between individuals and their doctor/treatment team. There should be no blanket contacting of women with ovarian cancer to discuss DNACPR/DNR. Where this is not the case we have, and will continue to, raise it with the appropriate organisations as an issue of the utmost importance.

We absolutely oppose any policy that puts undue pressure on women with ovarian cancer to make decisions about whether they would choose to be resuscitated. The fact that this has happened is unacceptable. We have raised our concerns and have written to NHS England to ask them to review how conversations like this should be handled in light of the current outbreak.

Why have women been contacted by their GPs about resuscitation?

The NHS have recognised that it’s very important that any healthcare professionals are aware of people’s wishes if they become very unwell due to Covid-19. They sent a letter to GP surgeries saying that “In regard to those patients who are the most vulnerable, we should encourage them to discuss their individual wishes and concerns regarding their treatment preferences should they develop Covid-19 symptoms and record those preferences in an advance care plan.” Some GP surgeries have started contacting people by phone to discuss what their wishes might be should they become very unwell. 

Many of us find conversations about becoming very unwell or dying difficult, and while these conversations can be valuable to make sure that our wishes are clear and respected, they need to happen at the right time, with the right people, and be handled in the way that’s right for each individual. In the past, if and when they were needed, conversations like this usually happened face to face with a specialist treatment team at hospital, at a time that was appropriate and right for each person. 

The Covid-19 pandemic has meant there have been significant changes to how things are working, and we are aware that a number of women with ovarian cancer have been contacted who do not feel that this was relevant to them, and who say that they have felt pressured into making decisions about end of life care, and particularly about resuscitation (DNACPR/DNR).

What is DNR/ DNACPR and where does it come into this?

DNACPR stands for 'do not attempt cardio pulmonary resuscitation', sometimes called DNR or 'do not resuscitate'. This is a discussion between you and your doctors to decide that you do not want doctors to attempt to restart your heart should it stop. This decision is then recorded in your medical notes so everyone is aware of your wishes. Sometimes the doctors may advise you that resuscitation would be unsuccessful, or some people feel that they do not want to be resuscitated as it would mean they would need to endure intensive treatment when they are already unwell. A discussion about resuscitation/DNACPR/DNR often takes place as a wider discussion about wishes about what might happen at the end of someone’s life – this process is sometimes called ‘advanced care planning’.

These are difficult discussions, and it’s very natural to be surprised or shocked or upset if resuscitation or advanced care planning is raised during a phone discussion with your GP. It might be particularly shocking if you are well and don’t feel that the discussion is relevant to you. No one should ever feel pressured into having a discussion about their end-of-life wishes or whether they want to be resuscitated. Our Support Line is here if this has happened to you, and you want someone to talk to.

Will I get a call and what should I do if I get one?

You might be concerned about receiving a call, and worried about how this will make you feel. It’s important to know that we have been reassured that it is not NHS policy that all women with ovarian cancer should be called to discuss resuscitation, and so far we are only aware of a small number of women who have received calls about this.

If you do receive a call, there are a few points that you can keep in mind:

  • It’s likely that different GPs are making different decisions on who should be contacted to discuss this. Ask your GP on what basis you have been called and make sure they are aware of your individual situation.
  • If you do not wish to discuss this with your GP or anyone else, tell them. You could let them know that now is not the right time, or that you need to take some time to think about things.
  • No one should make you feel guilty for making a decision one way or another, or making no decision at all. While your GP or other healthcare professionals may provide advice or give you their recommendations, you have the right to have your wishes respected.

Where can I find more support?

The Target Ovarian Cancer team are here to support you with any questions you have about coronavirus/Covid-19, any aspect of ovarian cancer treatment, or if you just need a chat. 

You can reach us on 020 7923 5475 from 9am until 5.30pm Monday to Friday, or contact us via email. Outside of these hours, you can find more information and support on our website, including our In Touch group for women with a diagnosis of ovarian cancer.