Overview

Treatment planning for seriously ill patients

If you have a long-term (or chronic) condition, we always think about which treatment is most likely to help you recover. However, it's also important to think about what happens if the treatment is not successful.

If you have already thought about this, please consider sharing your feelings with:

  • your close family or friends
  • anyone in the team who looks after you

Our aim is to support you, your carers and your loved ones to:

  • understand the different options for managing your condition
  • be involved in planning your care and treatment

This short film talks about planning ahead and what we might do if someone is seriously unwell and we are not sure if they will get better in spite of treatment. We call this uncertain recovery.

There are times when we may give a treatment to a person and we don't know if it will work. This may happen when a person has been living with an illness or a condition for a while and then get something sudden, like an infection. The person may be so sick that they could die, but they could also respond to the treatment.

All treatments are regularly monitored and reviewed and if it becomes clear that a treatment isn't working or that it's a burden for a person, then it might be stopped.

If you are facing uncertain recovery, it's really important to think about how and where you would like to be cared for and to share this with those close to you and the healthcare team. If you want more information, please ask those looking after you.

Please talk to your healthcare team if you would like more information.

Peter's story

Supported by our specialist nurses Winifred and Louisa, our patient Peter and his son Alastair share their experience of talking about dying and planning ahead.

Peter shares his wishes about medical treatments. He explains why he chose to make a Lasting Power of Attorney for health and welfare and for financial decisions.

Alastair describes how reassuring it can be to know what people close to you would want at the end of their lives.

Peter – From the moment you're born, there's only one end I'm afraid - you don't go on forever. I'd like to: I enjoy life. Planning for one's death is just part of life, anyway. We're going to go in the end, sometime.

Winifred Yeboah, renal supportive nurse – Most people tell us that they wish to die at home, surrounded by family and friends. However, the choices they make means that this does not always happen.

Peter - My dear wife, she died April 2017. One moment she was there, the next moment she'd gone. Pat and I, we used to sit opposite and we would discuss death, I can't say endlessly, but quite a lot. So we discussed what we would want to do, depending on the situation that came to us.

Alastair (Peter's Son) – When my mum died, it was very sudden and completely unexpected. The fact that we knew what Mum wanted in some ways made it a lot easier.

Peter – When the children raised the idea of a Lasting Power of Attorney, I thought, "well, it's the best thing to do whilst I'm still sane" and so I had no compunctions whatsoever. I told solicitors,"I want a new will and I want Lasting Power of Attorney both for health and welfare and also for financial affairs" so that whilst I'm still able to make that decision, to go ahead and do it. I'd want life-sustaining treatment if it was eminently treatable and I would be okay afterwards. I was told I've got prostate cancer, but just a small shadow and probably controllable. Every 12 weeks it takes a few moments for the injection and that keeps the prostate cancer problem at bay, so far. With resuscitation, I think it depends on the degree of capability. One reads of cases where they're just going on and on and on. If it's a hopeless case, I wouldn't want to live. No point.

Winifred – People tell us the sort of treatments they would like and would not like. For example, some people would not like putting tubes down their throat. Another thing that people often think about is resuscitation or cardiopulmonary resuscitation (CPR). CPR can save lives, but for those living with poor health it isn't always the right thing to do. Apart from the medical choices, it is helpful to consider the little things that are important to you, like where you would like to be cared for: at home, hospice or hospital; things that make you smile - could be food, smells, photos - or family that gather around you.

Peter – I'm an optimist, so I always think that the best of things will happen, you see. Keep cheerful. I know I've done the right thing for my family. They are not going to be worried any more.

Making decisions about your treatment and care

Your care team is responsible for assessing your health and deciding which treatments are best for you. We always talk to you about your condition and options for treatment. This helps us to understand what is important to you.

You can say yes or no to a treatment that we offer you. However, you cannot insist on having a treatment that will not help you or may cause you harm.

If a treatment does not work or becomes a burden, we may stop it. We always talk to you about this. It’s important that we decide the right plan together.

You need to think about what you might want if you became very unwell. We then know how you would like to be cared for. 

Read more about planning your care in advance.

Useful information

For more information about making a health and welfare lasting power of attorney (LPA), please visit: www.gov.uk/power-of-attorney

For information about creating an Advance Decision to Refuse Treatment or an Advance Statement, please visit: www.mydecisions.org.uk

Let's talk

We know that conversations about planning ahead can be a lot to take in.

At Guy's and St Thomas', we aim to improve the experience of patients, carers, staff and the general public by talking about and preparing for death, both in hospital and in the wider community.

Our staff are trained to have these difficult conversations with you, so that you can plan together.

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Do you have any comments or concerns about your care?

Contact our Patient Advice and Liaison Service (PALS)

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