When you reach the end of life, care can help to control your pain, maintain your comfort and support you to live as well as possible, for as long as possible.
What is end of life care?
Being diagnosed with an illness for which there is no cure can be devastating. Fear of death and anxiety about coping with the pain and practicalities of reaching the end of life can seem overwhelming. End of life care, or palliative care, is the name given for support offered in the last months of life. It’s about symptom control, but it extends far beyond the physical. You and those close to you should be supported socially and psychologically so that you are able to come to terms with your diagnosis, make the most of the time you have available and reach the end in peace.
What is palliative care?Palliative care has been defined as:
Care that is intended to alleviate a problem without addressing the underlying cause. It is the care provided for people suffering from an incurable condition such as terminal cancer or progressive neurological conditions like motor neurone disease, multiple sclerosis or the later stages of dementia. Life-limiting illnesses can cause distressing and debilitating symptoms, including sickness, sleeplessness and pain. Palliative care should not only ease discomfort, but it should also offer holistic support to improve emotional, physical, mental and spiritual wellbeing.
End of life care pathwayThe Government stopped the use of the Liverpool Care Pathway following negative feedback from patients and relatives as well extensive adverse coverage in the media. Despite aiming to provide the very best care, too often the pathway wasn’t being correctly followed, leading to unnecessary suffering. The National Institute for Clinical Excellence has developed a better pathway for people reaching the end of their lives. They emphasise the importance of treating each person as an individual and addressing their specific needs. The cornerstones of care should be: Improving the quality of life, making sure that patients have a positive experience with treatment and care, as well as protecting them from any avoidable harm and maintaining a safe environment.
Planning end of life careWhether you are considering care for a loved one, or thinking about your own future, planning ahead is important for ensuring that the care you receive meets your needs. As well as dealing with practical matters like Power of Attorney, wills and funeral planning, it’s important to think about the way you would like to be supported at the end of your life. Writing an advanced care plan can help you organise and communicate your thoughts, so that your family, healthcare team and those who care for you, fully understand your wishes. You can also edit the plan if you change your mind as your disease develops.
Questions to think about include:
- Where you would like to be cared for; in your own home or in a residential facility or hospice?
- Are there any treatments that you would refuse?
- Would you like resuscitation if your breathing stops or if you have a cardiac arrest?
The right care for youThe best end of life care should cover these five key aspects:
- Regular medical review to ensure treatment is meeting your changing needs (if your GP or specialist thinks that your death may be soon, then they should let you and your loved one know and help you all to understand what to expect).
- Sensitivity, honesty and clarity in all communications with you, and those close to you.
- Being involved in important decisions relating to your treatment and care.
- The needs of those who are important to you, like your family, partners and friends.
- A care plan designed to address your individual needs, developed and agreed with you (the plan should be delivered and executed with compassion, kindness and respect).