End of life care

At some stage all of us will have to face the fact that we (or our loved ones) have a life limiting condition and are coming towards the end of our lives.

End of life care (EOLC) is support for people who are approaching death. It helps them to live as well as possible until they die, and to die with dignity. It also includes support for their family or carers.

NHS Portsmouth Clinical Commissioning Group (CCG), in collaboration with our neighbouring CCGs, the Rowans Hospice, our GPs, community nurses,QueenAlexandraHospital and other local health and social care providers, are trying to improve end of life care for the local people we serve. We are promoting tools that have been proved to improve end of life care, improving quality of life in ones final months and allow more people a better death when the time comes. These tools include advance care planning, the co-ordinating future care register, better anticipatory prescribing and better care for dying people in their own homes. As well we are of course also continuing the excellent work already going on at the Hospice and Hospital and improving it where possible.

End of life care includes palliative care, but starts earlier. If you have a terminal illness, or are approaching the end of your life, it may be a good idea to make plans in advance for the future of your care. Planning ahead in this way is sometimes called advance care planning. It involves thinking and talking about your wishes for how you are cared for in the final months of your life.

Palliative care will help to make you as comfortable as possible by relieving pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family or carers. This is called a holistic approach to care, as it deals with the ‘whole’ person rather than just one aspect of their care.

 People usually carry out advance care planning because they have a condition that is expected to get worse, which may mean they will not be able to make decisions, or communicate their decisions in the future. However, anyone can plan for their future care, whether they are approaching the end of life, or not. Advance care planning can help you let people know your wishes and feelings while you still can. Your wishes and preferences can then be shared with your family, carers, GP and others as appropriate. To improve continuity of care with emergency services at night and weekends we have developed the Co-ordinating Future Care register (CFCR). This is an electronic means of sharing essential information about your end of life care (not your whole medical record) between your GP and the out of hours GPs, the ambulance service, specialist palliative care team and local hospital. Doing an advance care plan (ACP) and having the information shared securely with others who may be involved with your care via the CFCR, has been shown to improve the quality of one end of life care – for both the individual and their family. We recommend it to you.

Talking about death doesn't bring death closer. It's about planning for life. Without communication and understanding, death and terminal illness can be a lonely and stressful experience; both for the person who is dying and for their friends and family. There may be practical matters as well as care issues. Though hard to start these conversations, most people find it a great relief once it’s brought up

It has been said that what we fear most about dying is the associated loss of control. By empowering people to express their wishes, that control can be restored.

Starting the conversation, particularly with those close to you, is never easy. We don’t want to sound gloomy, upset ourselves or upset others. But families commonly report that it comes as a relief to everyone once the subject is brought out into the open. If one person raises it honestly and openly, it gives others the chance to start having their say about their own death too.  Your GP can sometimes help you with these difficult conversations.

It’s in everyone’s interests to deal with these subjects, to talk about the practicalities and emotions surrounding dying, before it’s too late. So if you’re close to someone who may die in the next few years, you’re right to want to raise the subject. The irony is that the other person probably wants to raise it too.

Subjects you might talk about:

  • The type of care someone would like towards the end of their life
  • Where they’d like to die
  • Whether they wish to be resuscitated or not
  • Funeral arrangements
  • Care of dependents
  • Organ donation
  • How they’d like to be remembered
  • Whether they have any particular worries they’d like to discuss about being ill and dying
  • What they’d like people to know before they die

Your GP is a good place to start if you want to discuss end of life, but you can also find out a lot at these good websites

Dying matters – general information about preparing for a good death for the public and professionals. More information 

Say it Once - a Hampshire carers site where you can read about and download an easy to use Advance Care Plan. More information

The Rowans – our excellent local Hospice. More information

NHS Choices – general information for the public about end of life care (amongst many other matters). More information

Advanced decision to refuse treatment/Living wills – explains about these legal documents. More information

We are keen to know more about your opinions on this subject and ideas you have that may help us improve end of life care. Or if you would like to join our end of life public participation group please let us know       

Please contact us using one of the methods set out on our contacts page including the feedback form or using our email address: enquiries@portsmouthccg.nhs.uk

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