What is it?
Some people with kidney disease may reach a stage where treatments, including dialysis, may no longer help with symptoms associated with kidney failure or other co-existing conditions. In situations like this people are likely to be approaching the end of their lives.
Sometimes a person or their family will recognise this situation and request end of life care, which is also known as palliative care. Alternatively, doctors may start discussions with the person about future care preferences (or speak to their family members if they are no longer able to make decisions for themselves).
Discussions will cover preferences over types of care available and where care is provided. They can also cover the right to avoid certain procedures (for example, people can express their desire for a Do Not Attempt Resuscitation order (DNAR).
What is palliative care?
Palliative care is about helping people improve their quality of life by the early identification and prompt treatment of pain and other problems – whether they are physical, psychological, practical or spiritual.
Some people may have received some aspects of palliative care earlier on in their illness but as they approach the end of their lives their palliative and supportive care team will focus on helping them live out the remainder of their lives as fully, independently and as comfortably as possible, and to die with dignity.
Who will provide my care?
If you have requested or been offered end of life care your kidney doctors will work with your GP, district nurse, palliative care specialists and other healthcare professionals (such as dieticians, pharmacists, counsellors and social workers ) to create a care plan which is built around your individual needs and wishes. Together, they will make up your local Palliative Care Team.
They may provide care for you in hospital, at home or at your local hospice.
What type of care will I get?
Palliative care is focussed on relieving symptoms and offering practical, emotional and spiritual support. This may include:
- Providing medications to help alleviate issues such as breathlessness, nausea, fluid retention, itching and agitation
- Offering counselling to you and your loved ones
- Offering support and advice if you have any financial concerns or queries
- Providing you with information about services that may be available to you at your local hospice (such as physiotherapy sessions, art groups and stress-relieving complementary therapies)
- Arranging for you to speak to someone if you require spiritual support
- Helping you to put your personal affairs in order
- Depending on your wishes, possibly helping to arrange your final care at home with the help of community palliative care nurses or in your local hospice.
How can I put my affairs in order?
It isn’t always easy to think about our own dying or the arrangements that need to be made after we have died. NHS Choices have listed some helpful guidance and you may find it helpful to do the following:
- Make a will (with the help of a solicitor)
- Think about any responsibilities you may hold for family members and pets and organise alternative care.
- Think about who you would like to represent you if you lose the ability to speak for yourself.
- Make a list of names, addresses and telephone numbers of family, friends and business associates whom you would like to be contacted and told of your death
- Make a list of other important contacts, including your bank details and other financial accounts and the location of insurance policies, pension plans and other legal papers
- Write a statement about your wishes for your funeral service, burial or cremation
- Write down messages that you may wish to leave for loved ones
If you would like to make similar arrangements you may want to ask a trusted family member or friend to help you. But always seek advice from a solicitor if you need help with legal matters, including writing a will.
You may well go through a range of emotions when considering these arrangements but try not to bottle things up. Tell your kidney doctor, GP or Palliative Care Team about how you are feeling and they will be able to help you.
Will I have a choice of where I die?
Many people prefer to die at home in familiar surroundings, where they may feel more comfortable. This is especially so when there is help available from family, friends or carers, and support from community services and organisations such as Marie Curie. Other people would prefer to be in their local hospice or hospital.
If you have a particular preference, speak to your kidney nurse, doctor, GP, district nurse or palliative care nurse. They can then add your wishes to your care plan. You can update your plan as time goes on and change your preferences at any time. You can also ask for a copy of your care plan and keep it with you.
How can I be sure that these preferences will be respected?
Your kidney doctor, GP, and other members of your Palliative Care Team will follow your care plan and put arrangements in place according to your preferences. Sometimes people die suddenly, before plans can be acted upon but your team will do everything possible to respect your wishes.
If you have questions or concerns about care and support for you and your family at any time, don’t hesitate to speak to any member of your Kidney or Palliative Care Team.
Reviewed April 2019
The need for more research
Research into how to prevent kidneys going ‘from bad to worse’ could prevent lots of people being faced with difficult decisions about kidney replacement treatments. We also need more research to help professionals ensure that each patient can choose treatments that best fit their lifestyles.
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