There may have been a change in your condition that has led doctors and nurses to think that you may be dying. They will talk to you and your relatives, friends, carers about the diagnosis, what treatment (if any) could reverse the changes, and what they think the future might hold. This news may be a shock to you or a confirmation of your thoughts. It is important that you and your relatives, friends, carers feel able to talk openly with the doctors and the rest of the Practice multi-disciplinary team to voice any fears or concerns. All members of the Practice multi-disciplinary team are committed to caring for you in a manner which is respectful of your expressed choices.
What is an end of life care plan?
Care plans are developed by your healthcare team and you at every intervention. The aim is to deliver the care that you need and want at home. An end-of-life care plan reflects medical decisions, your insight and wishes (as well as those of your relatives, friends, carers) as to your care and support at this time. It does not dictate any specific intervention or any specific withdrawal of treatment but will be written specifically for your needs and reviewed regularly. Some people have appointment a lasting power of attorney for health to speak for them when they become unable. Please let us know if you have one.
GP will make medical decisions based on medical evidence, the prognosis and what interventions may be beneficial to you. These medical decisions will be discussed with you and form the treatment escalation plan. This may include a ‘do not resuscitate’ order. These are medical decisions but you should request a second opinion at any time if you disagree.
The rest of the care plan reflects your care needs, any symptoms that you have (for example, pain, breathlessness or agitation) and how they should be managed. Your wishes (and those of your relatives, friends, careers) and any specific care needs you have will be noted. This may include trying to meet your wish to be at home or in a hospice. This is meant to guide the healthcare team as a whole in delivering the best possible care and maintaining your dignity at this time.
Communication
GPs aim for all communication to be sensitive and honest. If we are not explaining things clearly or you have any questions then please let us know. The team will ask you for the contact numbers of relatives, friends, or carers and check if they wish to be contacted by the Practice. It is also important that everyone caring for you knows how to contact the Practice directly.
Medication, tests and investigations
The whole focus of carer at end of life is around what you need for your dignity and comfort. Some medications aimed at longer-term treatment may be safely stopped. New medication to control unpleasant symptoms will be prescribed. For example, morphine-like drugs are often needed for pain, and midazolam may be needed for agitation or distress.
As you become less well, swallowing often becomes more of an effort or too difficult. All necessary medications will be changed to injections either under the skin (or occasionally into the vein), or as a continuous infusion.
During these last days of life the healthcare team cannot change what is happening and so we will focus on you and any symptoms that you have. Measuring temperature, blood pressure, pulse, checking blood or other investigations will not aid care or change events, but may be in themselves uncomfortable and therefore may be discontinued.
Reduced need for food and drink
Loss of interest in, and a reduced need for, food and drink is a normal part of the dying process. You will be encouraged and supported to eat and drink for as long as possible. It is important that you (as well as your relatives, friends, or carers) talk to the GPs and the nurses about your need for food and fluid.
A dry mouth is very common at this time and is usually not a sign of dehydration, rather the need to breathe via the mouth. Good mouth care is very important, for example using fluid on a sponge. The Nurses will explain to your relatives, friends, or carers how to give mouth care, and you can also say what you like and dislike.
Comfort and support
When someone is dying it is quite normal for their condition to vary from day o day or even hour to hour. Your relatives/friends/carers may spend as much time with you as possible. Hearing the familiar voices of family and friends can be reassuring and it may be comforting to share memories and plans. We appreciate that this is a very difficult time for your relatives, friends, or carers and we will offer them as much support as possible.