Originally published by Elder
Palliative care focuses on symptom control, advanced care planning, and quality of life. It’s a care type that’s often misunderstood, with many believing that it’s only suitable for those living with a late stage terminal illness. In fact, there are five stages of palliative care which can take place over a number of years, and understanding these can help you decide when and how to put care into place.
What is the difference between Palliative care and end of life care?
Palliative and end of life care are terms that are often used interchangeably when discussing care, however they’re not the same – end of live care is actually just one part of palliative care.
Palliative care is for anyone living with chronic diseases, or life-limiting illnesses. These are illnesses that can’t be cured such as cancer, chronic kidney disease, lung disease or dementia.
Receiving palliative care doesn’t always mean you’re coming to the end of your life. In fact, some people miss out on palliative support because they didn’t realise it was appropriate for their condition, or the earlier stages of their illness. The WHO estimates that globally, only about 14% of people who need palliative care are receiving it.
In lots of cases, palliative care begins relatively soon after diagnosis or during treatment, and people can live for years while receiving palliative care.
The purpose of this type of care is to provide support that can improve your quality of life. This includes:
- Managing your physical symptoms and pain
- Managing the on-going treatment of your illness
- Providing emotional and spiritual care
- Providing daily support with things like washing, dressing, and meal preparation
- Extending support to your family and friends
- Supporting your advanced care planning i.e ensuring your wishes are properly documented and carried out as your illness progresses
What is end of life care?
End of life care occurs during the last stages of palliative care. It’s provided to people when their terminal illness has advanced, and they are believed to be in the last 12 months of their life.
The aim is to ensure you are as comfortable as possible so that you can make the most of the time you have. During end of life care, your Health Care Team will be able to provide additional emotional support to your loved ones too, helping them to understand what to expect towards the end of their caregiving journey.
Meeting your palliative care needs
Because palliative care focuses on you as a ‘whole’, and doesn’t only address physical symptoms, you’ll likely receive support from a variety of health and social care professionals, sometimes referred to as an interdisciplinary team.
It’s important to remember that the professionals providing your care should reflect and support your wishes, so don’t be afraid to speak up about what’s most important to you, and the kind of support you want.
Your palliative care team may include:
Doctors – Your GP will be central to your palliative care, and will work with other specialist doctors and therapists to keep you comfortable and help you get the most out of life.
Nurses – If you’re receiving on-going treatment this can be provided by nurses in a healthcare or hospice setting, or at home via district and community nurses.
Social worker – They’ll help you source practical help at home, and guide you towards key services such as family and financial support.
Live-in or visiting carer – Professional carers can make daily life easier, providing personal care and companionship.
A religious group – This could include support to help you attend religious or spiritual services, or visits from a faith leader to help you practice your faith at home.
A counsellor or psychologist – They’re trained to listen and offer guidance on any fears or worries you or your family may be experiencing, and can provide on-going support to your family.
Charity and support groups – Organisations such as Macmillan can help direct you to additional specialist support from people who understand or have experienced your illness.
What are the five stages of palliative care?
Palliative care is commonly split into five stages, understanding these stages can help you make decisions for your own care, and ensure you and your family is getting the right support, at the right time.
Stage 1: Creating a plan
This is when your initial care plan is created. Your GP, along with any specialist medical professionals involved in your care, such as occupational or physiotherapists will work with you to set out which palliative care services you need now, and how these services can evolve as your illness progresses.
This initial plan will usually look at things like:
- Your current and future treatment plan
- The expected progression of your illness
- Essential medicines and symptom relief
- Your initial care preferences, such as whether you’d like to remain home, or if you’d like a specific form of therapy
- At this stage, you may wish to start the conversation around your wishes – such as an advanced decision, a Lasting Power of Attorney (assigning a loved one to make health and care decisions on your behalf) or a living will, but don’t feel like you have to if you’re not ready.
Your advanced decision will set out when and under what circumstances you would refuse treatment or resuscitation, should a time come when you’re unable to make or communicate this. It’s a big decision and an important part of your care plan, so you may find it helpful to discuss the consequences of your decision with a doctor.
Stage 2: Preparing emotionally
Depending on the level of care agreed during stage one, your social worker, counsellor and religious or spiritual professional (if requested) will work together to provide you and your family with emotional support and help you prepare for what’s ahead. This could include arranging a safe space to discuss your emotions with a qualified therapist, connecting with chaplaincy services to help you explore ideas around meaning and purpose, or trying complimentary therapies such as massage or music therapy.
Stage 3: Early stage care
Your healthcare professionals will look at all aspects of care that can help you to stay as independent and possible. If you’re receiving care in your own home this may include sourcing assistance for daily living from visiting carers, or setting you up with specialist equipment.
Community care nurses may be able to arrange for you to get an adjustable bed or relieving mattress on loan. If you experience shortness of breath, you’ll likely be provided with oxygen cylinders or nebulisers.
If your home requires some adaptations to help you move around safely, ask your social worker about Government funding. Most local councils will cover the cost of modifications under £1000 regardless of your income. This can help with installing things like grab rails, ramps, and temperature controlled mixer taps
If your needs are more advanced, you may be able to apply for a Disabled Facilities Grant of up to £30,000, which can help with larger modifications such as walk-in showers or baths, and stairlifts.
Stage four: Late stage care
This is when your health care team will help you to plan more permanent, late-stage care. Often this is the stage where discussions around hospice care take place. If you choose to stay at home, they, along with your social worker will help you to arrange live-in care with a care provider with an acute understanding of your condition or illness.
It’s at stage four that end of life care begins.
Stage five: Supporting your loved ones
Stage five is when your palliative care team will offer bereavement support to your loved ones, usually over the course of 12 months.
At what stage does palliative care start?
There’s no definite point where palliative care should begin, however it’s generally considered that the earlier you seek support the better. Ultimately it comes down to when you’re ready, or when you need additional support to manage a chronic illness.
While every illness is different, life-limiting conditions often share common symptoms such as fatigue, loss of appetite, depression, and pain. Having the support of professionals with the right palliative care skills can help you find physical and emotional comfort, so that you can focus on spending meaningful time with your loved ones.