Understanding the 5 stages of palliative care can help you get to grips with a terminal diagnosis in yourself or a loved one.
Taking each stage as it comes can help you feel grounded and live in the present moment.
Knowing a plan is in place for care at every stage, and eventuality, can help living with a life-limiting illness.
This article will cover the 5 stages of palliative care which are key to unlocking support for individuals and their families.
Here’s a summary of what we’ll cover:
- Palliative care is a comprehensive approach to managing a terminal illness.
- The palliative care team is made up of professionals who support your physical, emotional and spiritual needs.
- The first of the 5 stages of palliative care focuses on creating your care plan and providing early stage emotional support.
- The later stages of the 5 stages of palliative care ensures a dignified and comfortable transition, as well as bereavement support for loved ones.
What is palliative care?
Palliative care is the care someone receives after being diagnosed with a life-limiting illness.
It is designed to provide a holistic approach to care, which connects emotional, physical and spiritual wellbeing.
The individual, as well as their family, is involved in the 5 stages of palliative care.
Palliative care, which transitions into end of life care, is a positive thing and doesn’t always mean the person receiving it will die imminently.
Are you worried about a loved one?
Advice for families about palliative care
When supporting a loved one with a terminal illness, families will have lots of questions about the future.
If you’re struggling to come to terms with the fact your loved one will die, you may be experiencing anticipatory grief.
Alternatively, emotionally overwhelmed family caregivers can experience something called compassion fatigue.
Ultimately, when organising care for your loved one, keep in mind a person-centred care approach.
What are the 5 stages of palliative care?
Let’s take a look at these 5 stages in real detail.
Remember, every personal journey is unique, but these stages paint a broad road map.
Stage 1 – Diagnosis and planning
The palliative care journey can begin on diagnosis of a life-limiting illness, or later down the line.
It can help with planning for the stages of the illness and help you and your family understand how it will progress.
This first stage introduces you to the care you may need and make any decisions about the care you want to receive.
What can you do at this stage?
There are financial benefits for elderly that can be helpful in covering some costs when living with a terminal illness.
The Personal Independence Payment (PIP rates) can be fast tracked for people who have a year or less to live .
It may also be a good time to think practically about financial and legal planning for the future.
Find out more about living with an illness and planning for the future in our guide what is lasting power of attorney?
What will your support look like in the first stages of palliative care?
Being diagnosed with a terminal illness can be an extremely troubling and emotional time.
If you don’t have the right support around you, daily activities can become a struggle.
This puts you at risk of social isolation, which increases the chances of depression and anxiety – find out how to cope with loneliness.
Palliative care in the first stages can help people come to terms with a diagnosis and live life as normally as possible.
Stage 2 Emotional support and preparation
The dying process is, of course, an emotional time for everyone involved, and one which everyone deals with differently.
At this stage, people’s emotional, mental, religious or spiritual needs should be catered for.
This could include organising counselling sessions for the individual and their family to discuss their feelings and fears about the future.
Or meeting with an appropriate religious or spiritual guide to provide emotional support.
Understanding emotions in terminal illness
People living with a terminal illness are likely to be feeling a lot of emotions, all of which are equally valid.
They may experience:
- Anger and frustration
- Grief and sadness
- Fear and anxiety
- Denial
- Loneliness
- Regret and resentment
- Relief and acceptance
Being unable to cope with all these emotions can lead to emotional distress and conditions such as anxiety or depression.
How can the professionals help handle emotions in palliative care?
These emotions are a perfectly natural part of the palliative care process, and the professionals can help.
Some of the causes of emotions and emotional distress may be physical as well as mental.
Pain or nausea can cause distress and fear, which a palliative care nurse can provide appropriate treatment for.
Some people may have anxiety, regret or spiritual concerns, which counsellors as well as faith or spiritual professionals can allay.
Stage 3 – Responding to increasing care needs
As an illness progresses, new care is likely to be implemented to reduce pain and ensure the person is comfortable.
They may be entering a less stable stage, so care needs like personal care become more of a priority.
A person can still receive treatment for an illness, for example chemotherapy for cancer, however some people may choose to stop actively treating it.
Therefore, instead of continuing aggressive treatments, they prefer to manage pain and enjoy the time with their family and friends.
How can the palliative care team support changing care needs?
A palliative care team is made up of dedicated professionals, which includes nurses and care staff.
As the illness progresses, and more complex care is needed, specially trained carers become involved in providing care.
This could require specialist nursing services such as medication administration or feeding.
Or round the clock care may be needed, meaning a live-in carer is hired if a person opts for palliative care at home.
Stage 4 – End of life care begins
There may come a point when a person decides to stop receiving treatment.
Whether a prognosis is a year or a few hours, end of life care begins at this point.
With sustaining treatments stopped, the palliative care team manages pain and ensures the person has everything for a peaceful passing.
Family, carers, nurses, counsellors and religious or spiritual guides can provide support at this final stage of life in whatever is needed.
Are you worried about a loved one?
Where can you receive end of life care?
An individual can receive end of life care in a place that is comfortable for them, and ensures they have access to the right support.
This includes palliative and end of life care in:
- Own home
- A hospital
- A hospice (a dedicated space for palliative care)
- A care or nursing home
There aren’t necessarily any benefits for choosing one location over another, this is a personal preference.
Stage 5 – Bereavement support for loved ones
Death is an undeniably difficult experience for families who will experience a range of reactions and emotions.
The final stage of the palliative care journey is providing support to family members who are processing the death of their loved one.
This can involve access to counsellors, religious and spiritual leaders and signposting community resources for bereavement.
What does bereavement support involve?
Bereavement support can include:
- Bereavement counselling
- Supporting you to come to terms with your feelings
- Help organising a funeral
- Other practical steps to take after someone dies
Remember that grieving is a unique experience and there is no set way one should feel or act after losing someone.
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Empowering care for your loved one
If you notice your loved one struggling with tasks they used to easily do, a little bit of home care could go a long way.
The Sweet Pea service can help you find the care your loved one needs to maintain the feeling of independence.
Whether it’s support with personal care tasks or help a round the house, our database of top-quality providers has got their care covered.
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