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Let's talk: information to support planning ahead

 

Supporting patient and carer conversations

We've worked with patients and carers to develop four short videos that explain how clinical decisions are made, options for place of care, how to plan when recovery is uncertain and do not attempt cardiopulmonary resuscitation decisions (DNACPR). Our aim is to support patients and carers to understand the different options available for managing their condition and to be involved in planning their care and treatment.

Do not attempt cardiopulmonary resuscitation (DNACPR)

This video explains cardiopulmonary resuscitation (CPR) and DNACPR orders.

  • Cardiopulmonary Resuscitation (CPR) and DNACPR orders - video transcript

    Cardiopulmonary resuscitation, usually called CPR, is a treatment used to try and restart somebody's heart when it stops unexpectedly. It's a treatment that involves pushing blood around the body by giving chest compressions which involve pushing very hard on the centre of the chest, blowing air into the lungs with a special bag usually via a tube that's inserted into the airway and sometimes we will also give drugs which are given either through a vein or sometimes using a special needle put into the bone, and electricity to try and get the heart restarted. CPR works best in people who were relatively well before their heart stopped. It doesn't work very well in people who are very frail or who have a lot of underlying medical problems which make it unlikely that we can resuscitate them successfully.

    Because it can cause pain discomfort and distress it's important to identify those who won't benefit from the CPR to protect them from receiving it. CPR is not a treatment for ordinary peaceful dying.

    CPR is something that you can talk to us about at any time and we will always talk to you about it if there are concerns as to whether it is an appropriate treatment for you. If you disagree with any decision that's made you can request a second opinion.

    It's possible that you won't be able to discuss your wishes and beliefs about CPR with the medical team because you're too unwell. If that happens the medical team will talk to those who are important to you about it. That means it's very important that you have talked to your family and friends about your wishes and beliefs so that the medical team can gather as much relevant information as they can before they make their decision.

    If you've made an advance decision to refuse treatment, a living will, that applies to CPR you must tell the team looking after you. If you've appointed a lasting power of attorney for health this person can refuse CPR on your behalf but they can't request it if we think that it might fail.

    When CPR is not going to be given, the doctors looking after you will fill in a form. This is called a 'do not attempt cardiopulmonary resuscitation' order, or a DNA CPR order. This is a communication tool that informs everyone who's looking after you that we're not going to give that treatment. If you are going home they will give you a copy of the form to keep at home. It's very important that health care providers who are coming into your home to give treatment are aware of that order.

    DNA CPR applies to CPR only. You can still come into hospital and receive all other forms of treatment. Please talk to your healthcare team for more information.

 

Planning your care

This video is intended to support patients and carers understanding of treatment escalation planning and options for preferred place of care.

  • Planning your care - video transcript

    If you are very ill and your health gets worse there are a number of things to think about. For example, you might want to consider where you would prefer to be cared for.

    Many of our patients would prefer to avoid coming into hospital and instead receive their care where they usually live. Many illnesses can be managed outside of the hospital or by coming to the hospital just for the day. You can access professionals, treatment and equipment where you are, through your GP. If you've planned to have your care at home you can still come into hospital if you change your mind.

    Most patients who come to hospital for their treatment are seen first in the emergency department, or A&E, before moving on to a general ward. Lots of treatments and procedures take place there so it can feel quite busy.

    Critical care, also known as high dependency or sometimes intensive care, is an area which can be very busy and involves very close monitoring. People who are admitted to intensive care may be connected to machines which provide organ support, sometimes known as life support. Some people may be sedated for a period of time during this treatment.

    The experience of being in intensive care is highly demanding on the body and the mind. That's why it's really important to consider if this is the right thing to do for the patient.

    Hospices provide care for people who have illnesses that won't get better. That includes conditions like dementia, heart and breathing problems and cancer.

    Some people assume that hospices only provide care to people who are very close to death but in fact lots of people choose to visit hospices for a short time to work on a symptom or a problem before going back home again. For example, someone with heart failure might choose to visit the hospice for a short time to work on their breathing problems and then they go back home.

    Lots of hospices also offer other services that you can visit just for the day.

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

 

Uncertain recovery

This video explains what is meant by uncertain recovery and advises patients and carers to consider what is most important to them, including place of care and acceptable levels of treatment.

  • Uncertain recovery - video transcript

    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 health care team. If you want more information please ask those looking after you.

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

 

Making decisions about treatment

This video aims to support patients and carers in understanding how decisions are made when offering treatment and how a patients capacity to be involved in decision making is assessed.

  • Making decisions about treatment - video transcript

    This short film talks about decision-making and planning treatment. Most people respond well to treatment but it is important to think about what you might want if you were to become very unwell. Your healthcare team are responsible for assessing your health. We need to know what is acceptable and what you might want so that we can make the right plan together.

    It is a good idea to communicate your wishes and preferences about your treatment, such as who to involve in discussions, the types of treatment you like to have and a place you prefer to be cared for so that these can be considered when planning your care.

    It's always assumed that people can make decisions about their care, unless there are concerns about their ability to do so. We assess this in four ways. So we would look at: if the person understands what's been said, we would look at their ability to remember what's been said, to weigh up the pros and cons and to tell us how they feel.

    You can refuse any treatment that's offered to you if you have the capacity to do so. Also, if you've made an advance decision to refuse treatment we will respect that too. lf you have made an advance decision you must show that to your care team so they know what you want.

    Decisions on treatment are based on science and evidence. Because of that you won't be offered any treatment that won't work for you. However, if you disagree with any plan that your team has suggested you can request a second opinion.

 

Peter's Story

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

Peter shares his wishes about medical treatments and why he chose to appoint a Lasting Power of Attorney for Health and Welfare and for Financial Decisions. Alastair describes how reassuring it can be to know what those close to you would want at the end of their lives.

If you have thought about your wishes, consider sharing with those close to you and your healthcare team.

Read our Let’s talk treatment planning patient information leaflet for more information.

  • Peter's Story - video transcript

    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 anymore.

    Message from Guy’s and St Thomas'  If you have thoughts about your wishes, consider sharing them with those close to you and your healthcare team. For more information, visit guysandstthomas.nhs.uk/LetsTalk

 

Additional resources

A lasting power of attorney (LPA) is a legal document that lets a person (a donor) appoint one or more people (known as 'attorneys') to help them make decisions or to make decisions their behalf. This gives the donor control over what happens to them if they have an accident or an illness and cannot make their own decisions (they lack mental capacity). Forms and guidance are available from the Office of the Public Guardian.

Coordinate My Care (CMC) is an innovative NHS service that builds medical care around the wishes of each patient. Plans are created with a healthcare professional (usually a GP) and then shared electronically with all healthcare professionals who might be involved in care and treatment.