End of life care supports people with life limiting conditions to live comfortably in the later stages of life.
It seeks to ease the pain for the individual and their family during this time, helping to improve quality of life where possible.
This is achieved through physical therapies, pain management and emotional support, as well as helping put in place plans for the future.
In this article we’ll explore what is end of life care, who is eligible for it and when it is offered.
Here’s a summary of what we’ll cover:
- End-of-life care seeks to help a person at the end of their life to live as pain-free and comfortably as is possible.
- There are elements of palliative care that continue during end of life care as the two overlap.
- End of life care can be administered at home, in a hospital, a care home, or a hospice.
- Future planning may also be part of end of life care including financial plans, funeral wishes, and where you would prefer to die.
What is end of life care?
End of life care is a type of care given to people in the last days, weeks, months or years of their life.
It can be given in a variety of situations and as a result of different conditions or health circumstances.
Different health and social care professionals can be involved to provide whatever you need to die with dignity.
As a form of palliative care, this holistic approach provides for a combination of health, social and spiritual needs.
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What does end of life mean?
This is the predicted last period of a person’s life after they have been diagnosed with a life limiting condition.
Receiving it doesn’t necessarily mean that end of life is imminent, but reflects that the condition can only be managed rather than cured.
Treatment may still be given for the condition, if deemed appropriate, and this can prolong the life of the person, as long as their comfort is prioritised.
This applies to conditions such as advanced cancer, motor neuron disease and advanced heart disease, among others.
End of life care for dementia
Sadly, there are no medical treatments available that have been proven to stop or cure the different types of dementia.
However, there are many therapies that can slow the progression of the decline of the brain, or offset the effects.
It is unfortunately inevitable that the condition will progress and cause greater cognitive decline, which affects dementia life expectancy.
In this case, care can help people living with dementia live as happy and fulfilled as possible through management of their symptoms.
When does end of life care start?
The support begins when a palliative care team decides that a condition has reached to a point where treatment is no longer working.
After continuous assessments suggest that a person is likely to die within 12 months, end of life care can begin.
Curative treatments, like chemotherapy for a non-responsive cancer, may stop at this time, however other treatments may still be used.
For example, if there is a tumour pressing on a nerve, this may be removed to ease the discomfort at the end of their life.
Is palliative care the same?
At the end of your life you can receive palliative care meaning that the two terms are similar, but not quite the same.
Palliative care refers to treatments which prolong your life and help you to live well with a life limiting condition.
While once you’re receiving end of life care, sustaining treatments for the condition will slow down or stop.
The palliative care team will treat pain in the most appropriate way they can as treatments are gradually withdrawn.
At this point, the palliative care team ensures that you’re comfortable and do not feel pain or distress, allowing for a peaceful passing.
What does palliative care involve?
It combines many aspects of care from medical to spiritual, including:
- Physical and occupational therapies, as well as help with feeding and continence care
- Emotional, psychological and mental health care for patients and families
- Spiritual or religious guidance
- Pain management
- Social care matters such as domestic help, personal care, mobility assistance
Who is involved in end of life care?
This can be an understandably emotional time for families, who are supporting their loved one and planning for the future.
This is not an easy thing to do alone, so the care team plays an important role in helping the transition.
This dedicated palliative care team can include:
- a GP and practice nurse who create a pain management plan
- a community nurse who provides treatments
- physical therapists who provide complementary therapies
- counsellors, faith leaders and even death doulas who provide emotional and spiritual support
How can carers provide support?
Whether they are family and friends, or trained agency staff, carers remain extremely important at end of life.
Often having known the person in care for some time, carers provide practical support such as home help and personal care.
Carers can also be a great source of comfort and emotional support to you and your family as a friendly face who knows you and your needs.
What are the options for end-of-life care away from home?
There are a number of options for where you can receive end of life care to maximise your comfort and happiness at this time.
Some people choose to die at home, with a dedicated care team supporting them and their families through the process.
Our guide to what is palliative care at home has more information and advice on dying at home.
However, if a home death is not desirable, the following end of life care options give you a comfortable home from home.
Hospice care
Hospice care refers to a style of care, rather than specifically the location in which it’s provided.
However, there are also hospices which deliver palliative and end-of-life care in a non-clinical setting that is homely and comfortable.
They tend to have a calmer and more personal style and feel, and focus on the treatment of the individual.
Hospice staff might include doctors, nurses, counsellors, social workers, trained volunteers, and different types of therapists.
Care home
Care homes are somewhat similar to hospices, however they are designed for general elderly care rather than solely end of life.
A specialist care home is good for someone at the end of their life as a result of that condition, such as an EMI unit offering end of life treatment of people with dementia.
A nursing care home might be most appropriate for someone nearing the end of their life.
Having nursing support for pain management may be helpful, as well as carers assisting with personal care and so on.
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Other considerations for end of life care
End of life care and future planning
As well as physical and emotional support, end of life care can include future planning, such as funeral plans and making a will.
This can be helpful for families after their loved one has passed, and leaves them comforted by the knowledge that everything happens as they wanted.
By planning for your death, you can plan your future care with your nursing and care team as well as where you would like to end your life.
If you have a condition that causes cognitive impairment, giving a trusted family member lasting power of attorney.
Advance statement and decision
Writing an advance statement is a way to express your wishes about the care you receive and can help avoid confusion or conflict.
It is different from writing a will, which directs what happens to you and your assets after your death.
An advance decision can help direct the treatment you receive and can be used to refuse medical treatments that prolong your life.
It is a legal document and must be made when you have the mental capacity to make decisions about your health and future.
Financial planning as part of end of life care
It can be very difficult to think about money during the emotional upheaval of losing a loved one.
Unfortunately, there is a cost associated with end of life care that must be dealt with by the family at some point.
But this doesn’t necessarily mean they will be left to pay for their loved ones’ care, depending on the financial plans put in place for this.
To avoid passing on financial worries to your loved ones after you die, a plan for paying for home care or care home fees is a good idea.
If you found this guide useful then you might like to check out these guides on:
- The difference between dementia and Alzhemier’s
- Inheritance tax threshold: Everything you need to know
- Are next of kin responsible for care home fees?
Prioritise your loved one’s care
If you can’t provide the care and support your loved one needs, you can be there for them by organising someone else to do so.
Using the Sweet Pea app, you can create a profile with your loved ones’ care needs and connect them with top quality providers.
Whether they need to increase their home care health visits or connect with a friendly face, Sweet Pea ensures that your loved one is in safe hands.