What Does End of Life Care Mean?
End of life care means care for those who are approaching the end of their life, including their family and friends. It often means the treatment of symptoms and can extend to counselling and spiritual guidance.
End of life care
Nothing can erase the pain of facing the loss of someone you love, but end of life care can help support the whole family and allow your loved one to pass on in comfort and dignity.
The term end of life care can seem negative and final, however it’s important to realise that receiving this kind of care doesn’t mean that death is imminent or that the medical teams have given up on your loved one. At this challenging time, accessing care can be a very positive step. There will be support to manage symptoms and maintain comfort and wellbeing, which will maximise joy and fulfilment.
What does end of life care mean?
End of life care is the support and treatment offered to people who are likely to pass on within the next 12 months. This can include people who are facing death within a few days or hours, those who have advanced incurable diseases and those whose age, frailty and medical conditions mean they are expected to die within a year.
When you’re reeling from learning that your loved one’s condition is incurable, seeking end of life care can seem like a negative step. But accessing support can make a real difference to quality of life both for the individual affected and for those who love them. The National Council for Palliative Care says that end of life care:
Helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.
From that definition, it’s clear that end of life care involves careful control of pain and other symptoms, but that it also extends far beyond this. It is a uniquely frightening and stressful time and the whole family should be supported practically, socially and psychologically. This can mean assistance with matters like feeding, bathing and toileting, help to come to terms with the diagnosis and the space to make the most of the time you have left. When the time comes, your loved one should be allowed to die in peace in the place of their choice.
Palliative care is a key component of end of life care. It is care that can alleviate a problem without treating the underlying cause. Palliative care can ease the distress and discomfort of people with incurable cancers, progressive neurological conditions like multiple sclerosis and advanced dementia. It can soothe symptoms like nausea, constipation, sleeplessness and pain allowing your loved one to rest or enjoy activities with the family.
Planning end-of-life care
Planning ahead is important to ensure that your loved one gets the care that best meets their needs. It’s vital to consider practical and financial matters like Power of Attorney and wills and to think about the sort of support they would prefer towards the end of life.
They don’t have to formalise these opinions, but an advanced care plan can ensure that the healthcare team fully understand their wishes, it can also help your loved one process their thoughts and feelings. Remember, the plan is written on paper not set in stone, they can edit it whenever and however they need.
It’s worth considering these questions:
- Where you would they like to receive care?
- Are there any treatments that they would prefer not to have?
- Would they like resuscitation if their breathing stops or if they suffer a cardiac arrest?
Where to start?
It can seem like a lonely time but there should be a team of professionals available to offer support. The problem is knowing who to ask and where to go. Too many people don’t want to be a bother or a burden but you should not have to struggle alone.
If your loved one is in a nursing home, hospital or hospice:
The nursing staff should point you in the right direction. There will be a palliative care team available to provide expert assistance, they should help you access the support you need whether it is medical, practical or spiritual.
If your loved one is at home:
The first port of call should be your GP and the district nurse in your area. The fact that your loved one is at home doesn’t mean that all the care is down to you. You can access a hospice at home service. Ask your GP, oncologist or medical consultant to refer you. A specialist team will work together with your doctor to ensure that all their needs are met, in the comfort of their own home.
Being cared for at home, surrounded by family and friends can be reassuring and comforting. However, as a carer it can be a difficult to manage household duties, cook meals, cope with supporting your loved one’s self-care and deal with your own feelings of sadness and loss.
Home carers can provide a helping hand with the trickier tasks at a time that fits with your schedule. From cleaning to help with complex care matters like incontinence, tube feeding or a ventilation, carer packages can be tailored to suit your individual needs. With help, you can focus on enjoying the time you have left together instead of being burdened with chores.
If you are frightened about the prospect of funding care, then phone your local social services department and ask for a care assessment. Financial support may be available for you to spend on the care you choose. People who have health needs such as a terminal illness may be entitled to fully-funded NHS continuing care. This can be received in a hospital, hospice or at home, according to your loved one’s wishes.
This is a sad and stressful time, but the right care should help make life a little easier.