Understanding the 5 stages of palliative care

Time to Read

9 minutes

Date

24 January

Palliative care explained

Palliative care is for people who are dealing with a life-limiting illness, such as cancer, heart failure and Alzheimer’s. It’s not the same as end of life care, which is a form of palliative care that supports people in the late stages of their illnesses.

Palliative care can last for months or even years. The aim is to help a person manage the symptoms of their illness and make their life as comfortable as possible. A multidisciplinary, palliative care team made up of doctors, nurses, hospice staff and other care professionals will look after patients and offer support to them and their families, as dealing with a life-limiting illness can be an emotional and challenging time for everyone involved.

Anyone who has received a formal diagnosis of a life-limiting condition can receive palliative care. Most people equate palliative care with end-of-life care. While they share similarities, palliative care focuses on improving a patient’s comfort and quality of life during from day-to-day. In contrast, end of life care aims to maximize comfort during a person’s final months or days.

What are the five stages of palliative care?

Palliative care is split into five stages to help patients and families decide what level and type of care is appropriate for the patient. Discussions surrounding palliative care will typically include the person’s GP and members of their wider medical and support team:

Creating a bespoke care plan
Giving emotional, spiritual and psychological support
Enacting the care plan
Transitioning to end of life care
Supporting family and loved ones

As each person and the progression of their condition is unique, it’s impossible to put a timescale on how long each period lasts. But planning for these stages will help to ensure your loved one has access to good and appropriate care.

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Stage 1: Creating a bespoke care plan

A team of healthcare professionals will conduct an initial assessment, considering the person’s wishes and preferences. It can help if you’re present at this meeting to support your loved one. This is the first step once someone has received a diagnosis of a life-limiting illness.

The multidisciplinary team will then devise a care plan that respects your loved one’s wishes and supports their palliative care. The plan will also consider:

The expected progression of the illness
An ongoing treatment plan
Any medicines required for symptom relief, along with dosage and methods of administration
The location where palliative care will be provided, e.g. at home or in a hospice

As part of the care plan, an occupational therapist (OT) can advise on adaptations at home, such as grab handles and ramps. An adjustable bed and/or pressure-relieving mattress may also be available.

Making decisions for your loved one

At this stage, your loved one may also want to think about granting (and registering) a Lasting Power of Attorney (LPA) to certain family members. These can be set up for their health and welfare and/or their property and financial affairs. A power of attorney is a legally binding document that allows someone to appoint one or more individuals to make decisions on their behalf when they no longer can. Speak to a solicitor or Citizens Advice for guidance on the process.

Some people may also decide to make what’s known as a Living Will or an Advanced Decision to Refuse Treatment (ADRT). When this is completed according to the Mental Capacity Act (2005), it also becomes a legally binding document. It allows them to refuse medical treatment they don’t want in the future if they become unable to make or communicate those decisions themselves.

Some people also choose to complete a ReSPECT form (or Recommended Summary Plan for Emergency Care and Treatment) with support from a doctor. This is not legally binding, as it only provides recommendations about their care and treatment in an emergency. But it can express wishes related to:

Resuscitation
Being admitted to an Intensive Care Unit (ICU) and ventilated
Being admitted to hospital and given powerful intravenous antibiotics
Oral antibiotics to treat a chest infection

Stage 2: Giving emotional, spiritual and psychological support

Between the time of the care plan being created and the time it takes to implement it, you and the patient will be offered emotional, spiritual and psychological support. This is the perfect opportunity to ask any questions you may have. You may get to confidentially ask questions and discuss your future somewhere you feel comfortable and safe to do so.

Stage 3: Enacting the care plan

At this stage, the care plan comes into action. The healthcare team may offer your loved one therapies to control symptoms such as:

Pain
Coughing
Wakefulness
Breathlessness
Fatigue

The care team will measure doses and adjust medications when needed, based on changes in the patient’s symptoms.

If you’re caring for someone at home, you’ll be in regular contact with their palliative care team, led by their GP. Consider the extra care and support they may need and whether they’re eligible for any funding. This could include funding for specialised home equipment and adaptations. Your local council will typically be able to pay up to £1,000 for any home adjustments However, if you need to make more modifications to your home, you may qualify for a Disabled Facilities Grant.

In the UK, you may be entitled to the maximum grants available:

England – up to £30,000
Wales – up to £36,000
Northern Ireland – up to £25,000

Please note that these grants are not available in Scotland. You can find out more about support for equipment and adaptations on the website of the Scottish government.

At some point, you may also have to think about whether home-based care is still the best option. There may come a time when you’ll need to consider a hospice or nursing home.

Stage 4: Transitioning to end of life care

People likely to pass away within the next 12 months will transition to end of life care. The aim of this stage of their palliative care journey is to help them pass away with dignity while considering their wishes.

If your loved one receives this prognosis while in a hospital or hospice but wants to pass away at home, they may transfer to their preferred location. If they’re already being cared for at home, their GP will be responsible for their care during this time.

Stage 5: Supporting family and loved ones

Don’t forget, if you’re the primary carer, it’s essential that you take time out for self-care while your loved one is alive and once they have passed away. This isn’t about being selfish; it’s about being practical. When you’re not feeling 100 per cent, it’s harder to give to others. Self-care activities that focus on being present create a sense of relaxation and can help you manage your emotions to prepare you for any new challenges during this time.

You can also use this time to discuss options with your healthcare provider to see if there are any ways to help you manage your mental health, so that you can get through this difficult time. By building upon your self-care practices, you can help improve the quality of life for you and your loved one. Or your GP can refer you to a mental health nursing team who can advise and prescribe medications that help with sleep and reduce anxiety.

At what stage does palliative care start?

Palliative care can start at any stage of a patient’s journey, even as early as their diagnosis. There is never a definite start time for when patients should start palliative care, it is mostly down to when the patient decides. Knowing the five stages of palliative care can help you and your loved one to decide when the best time to start seeking additional support.

Despite most patients believing their care should be reserved for when they are nearing the end of their life, it’s recommended to seek support through palliative care shortly after diagnosis or when treatment starts. The goal of palliative care is to extend the life of your loved one or make the rest of their life as comfortable as possible while managing their symptoms. This care can help with other symptoms that are not directly related to the illness, e.g. mental illnesses and fatigue that can manifest from terminal illnesses.

Palliative care at the Nursing Guild

At the Guild, we provide high-quality palliative home care services to people living in Scotland, Northern Ireland, and the Republic of Ireland. We’re fully regulated by the Care Inspectorate in Scotland and the RQIA in Ireland and have the highest rating for our services.

Our nurses and carers are carefully vetted, fully qualified, and available, even at short notice or in an emergency, to support people for weeks, months or years. Also, our case managers are all registered nurses with vast experience and knowledge.

The comprehensive services we provide aim to preserve a person’s privacy, dignity, and independence. This means you can focus on ‘being a family’ rather than taking on the role of carers.

Our services include:

Assessing care needs
Supporting rapid discharge from hospital or hospice, enabling loved ones to be cared for safely at home
Reviewing the home to meet changing needs
Supporting complex care, no matter what those needs are
Liaising with other healthcare professionals to ensure continued holistic support
Managing breakthrough pain and any flare-ups to keep clients as comfortable as possible

Find out more about our palliative care at home service

No matter where you live, we’ll find the right nurses and carers to support you for as long as you need. We’re here 24 hours a day, seven days a week.