The recent debate about assisted dying in England and Wales has sparked discussions in Parliament — and perhaps in some homes — about palliative and end of life care. Facing a serious illness can bring worries about pain, losing independence and what will happen to the people you love. Families and friends may also feel uncertain about how to help or where to turn to for support. NHS palliative and end of life care can provide support at this difficult time.
What are palliative and end of life care?
Palliative care aims to improve quality of life for people with a life-limiting illness. It includes relief from symptoms and support with the emotional, practical and spiritual effects of illness. It can be provided alongside treatment for the underlying condition.
End of life care is part of palliative care for people approaching death. It may last days, weeks or months and sometimes even longer. Although the final 12 months is often used as a guide, predicting how long someone will live is difficult even for experienced doctors.
These services support people with many conditions — including cancer, dementia and other serious illnesses.
Why are there calls to improve care?
Too many people still reach the end of life without the support they need. Problems such as inadequate symptom relief, overstretched community services and poor coordination between teams remain common.
Gaps in help overnight and at weekends can leave people distressed and contribute to hospital visits that better support at home might have prevented.
Good care helps people live as comfortably and fully as possible until they die. It includes prompt attention to pain, breathlessness, nausea and anxiety, alongside practical, emotional and spiritual support.
Staff should listen, explain honestly and sensitively what is happening, and involve you in decisions as much as you wish. Your preferences should be recorded and reviewed as your needs change.
You should know who coordinates your care and whom to contact when problems arise, including at night. Those close to you should receive advice and support, including help with caring and bereavement.
Who provides care and where?
Your GP, community nurses and hospital team may all contribute to your care. Specialist palliative care professionals can provide additional support when your needs are complex. Hospices and charities also work alongside the NHS to provide support.
Care can take place at home, in a care home, in hospital or in a hospice. Discuss where you would prefer to be, recognising that your wishes and needs may change over time.
Home is not the right setting for everyone. The support available and what family members can realistically manage are important considerations. Needing hospital or hospice care does not mean anyone has failed. Wherever you receive care, ask who is coordinating it and how the different teams will communicate.
How can you get support?
Start by speaking to your GP, hospital team or the professional already involved in your care. Explain what is becoming difficult, including symptoms, worries or problems coping at home. You can ask whether a palliative care assessment would help.
Before leaving an appointment, check that you understand the next steps. Who will contact you? Who should you call if symptoms worsen? What help is available overnight or at weekends?
Ask for these details in writing and keep them somewhere easy to find. If you have a care plan, make sure those supporting you know about it. Also ask about nursing support, equipment, help with personal care and respite for carers, including any eligibility rules or charges.
How can you plan ahead?
Planning starts with a discussion about what matters to you. Think about who you want involved, where you would prefer to receive care and any beliefs or wishes you want respected. You can revisit these discussions as your circumstances change.
Ask your team to help record your preferences and share them with the professionals involved in your care. An advance decision to refuse treatment lets you record which treatments you would not want and in what circumstances, if you become unable to make or communicate those decisions yourself.
In England and Wales, a health and welfare lasting power of attorney lets you appoint someone to make decisions if you lose the ability to make them yourself. You must have mental capacity when appointing someone to undertake this role.
Your team may also discuss cardiopulmonary resuscitation (CPR): attempts to restart your heart or breathing if they stop. A “Do Not Attempt CPR” decision, known as DNACPR, concerns CPR only. Other appropriate treatments will continue.
Decisions should be individual, with your wishes discussed and the clinical reasons explained.
Starting the conversation
You do not need to have every answer or complete every document before asking for support. A first conversation might begin: “I am worried about what lies ahead. Can we talk about the help available?” You can bring someone you trust and write down your questions beforehand.
Planning can help your team understand your needs but organising good care is a shared responsibility. You and those close to you should be supported throughout in making your decisions.
This story originally appeared on Express.co.uk
