Understanding the five stages of palliative care

If you’re supporting a loved one with a terminal condition, it can be difficult to know where to start. In this blog, we’ll help you understand the five stages of palliative care. With access to the right advice and information, you can start to plan out the medical, emotional, and spiritual care that they’ll need.

What are the five stages of palliative care?

The five stages of palliative care usually begin with a discussion and assessment by a group of healthcare professionals. This will typically include the person’s GP and members of their multidisciplinary team:

• Stage 1: Assessing future care needs
• Stage 2: Creating a care plan
• Stage 3: Symptom control
• Stage 4: Holistic support – thinking about mind and spiritual health
• Stage 5: End-of-life care and support for bereaved families

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 ensure your loved one has access to the care they need.

Stage 1: Assessing future care needs

This is the first step once someone has had a confirmed diagnosis of a life-limiting illness. 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 will also give you the opportunity to ask questions and make notes on what is said.

Stage 2: Creating a care plan

The multidisciplinary team then devises a care plan that respects your loved one’s wishes and supports their palliative care. The plan also takes into account:

• 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 – for example, 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.

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 produced for their health and welfare and/or their property and financial affairs. They’re a binding legal document that lets someone appoint one or more people to help them make decisions or make decisions on their behalf when they can no longer. Your GP or Citizens Advice can advise you about this.

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 3: Symptom control

The healthcare team may offer your loved one treatment to control symptoms such as pain, coughing, wakefulness, breathlessness, and fatigue. From time to time, doses will need to be adjusted and medications introduced or stopped as symptoms change.

If you’re caring for someone at home, you’ll be in regular contact with their healthcare team, led by their GP. At this time, you may also have to consider what extra care and support they need and whether they’re eligible for funding or require a private agency.

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: Holistic support – thinking about mind and spirit

As well as supporting your loved one’s physical health, their mental wellbeing is also an essential part of palliative care. Your GP can refer you to a mental health nursing team who can advise and prescribe medications that help with sleep and reduce anxiety, for example.

And don’t forget, if you’re the primary carer, it’s essential that you take time out for self-care. 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.

Stage 5: End-of-life care and support for bereaved families

End-of-life care supports people in their last months. It aims to help them to pass away with dignity while taking into account their wishes. If your loved one wants to pass away at home and they’re in a hospital or hospice, they may be able to be transferred. If they’re already being cared for at home, their GP will be responsible for their care during this time.

According to the NHS:

“People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this is not always possible to predict. This includes people whose death is imminent, as well as people who..”:

• Have an advanced incurable illness, such as cancer, dementia or motor neurone disease
• Are generally frail and have co-existing conditions that mean they are expected to die within 12 months
• Have existing conditions if they are at risk of dying from a sudden crisis in their condition
• Have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke

(Reference: https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/)

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 are 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 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

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No matter where you live, we’ll find the right nurses and healthcare assistants to support you for as long as you need. We’re here 24 hours a day, seven days a week so contact us any time, and we’ll respond – quickly.

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