What is palliative care?
Palliative care is a way of controlling symptoms to help you live out your final days as comfortably as possible. Commonly, palliative care may be offered to you if you are diagnosed with a terminal illness. Though, it’s not only for people who are living with terminal cancer – anyone with an illness they won’t recover from can get support. Palliative care aims to manage pain and other physical symptoms, as well as giving psychological help and social support. It is one form of end of life care, which focuses on the non-medical aspects of dying.
At the end of life
The goal is to help you and everyone affected by your diagnosis to achieve the best quality of life. You might receive palliative care alongside other treatments such as chemotherapy or radiotherapy. Palliative care doesn’t postpone death – instead, its aim is to make your last days as bearable as possible.
Here’s what palliative care does do, defined by The National Institute for Health and Care Excellence (NICE):
- It improves quality of life
- Treats dying as a normal process
- Gives relief from pain and other distressing symptoms
- Combines psychological and spiritual aspects of care
- Offers a support system to help people live as actively as possible until death
- Offers a support system to help the family cope during a person’s treatment and in bereavement
- It can take place in hospitals, hospices but also in people’s homes.
Who provides palliative care?
You’re likely to need both general and specialist care as your needs change. Palliative care can be provided in different places including in your home, in hospital, at a care home or a hospice. Take a look at our articles on dying at home and hospice care to get more information.
Specialist teams include:
- Doctors and nurses
- Physiotherapists, occupational therapists, dieticians and social workers
Specialist palliative care services may be provided by the NHS, local councils and voluntary organisations. These could include inpatient and outpatient facilities and bereavement support services for relatives of patients.
Those who give day-to-day care to patients with advanced illness and their family and friends, such as your GP, community nurses, care workers or Marie Curie Nurses.
General palliative care and routine check up are part of many healthcare professionals’ jobs. You might see these people regularly as part of your clinical treatment. These professionals should be able to assess your care needs, and they should meet those needs where possible.
Communication and decision-making
The National Institute for Health and Care Excellence (NICE) produced new guidance in December 2015 on the care of adults in the last two to three days of life. This included the important role communication and decision-making plays at the very end of someone’s life.
NICE urges people to discuss the dying person’s prognosis with them as soon as it’s recognised that they’re are near the end of life.
According to NICE, provide the dying person with:
- accurate information about their prognosis, explaining any uncertainty and how this will be managed by avoiding false optimism
- an opportunity to talk about any fears and anxieties, and to ask questions about their care in the last days of life
- information about how to contact members of their care team
- opportunities for further discussion with a member of their care team.
A recent study from March 2018 looking into the notion of ‘a good death’ makes the important point that current notions of dying well are based on predictable courses of decline “which do not correspond with the experience of [many] patients”.
While the use of the term ‘end of life’ is helpful when it comes to those with a terminal illness, knowing the precise cut-off point for nearing death isn’t always so easy, simple or empowering.
Those who are elderly, infirm or frail from the ageing process are usually vulnerable, depend on loved ones and aren’t always in the position to state their wishes surrounding death. For most, dying is an intrinsically difficult and distressing experience and the role of palliative care shouldn’t be to ignore that.
The future of palliative care
There have been calls for better transparency around the role of hospices. While they are great resource for many, having transformed our approach to those dying from terminal illness, hospices are often underfunded, strained and overworked. A better public health approach to ‘dying well’ would start with the restructuring of the way care and support is administered, together with an awareness of the different needs of those near death without a specific diagnosis.
If you or someone you know is living with a terminal illness, you can find support and information over at the Marie Curie website here
Head over to our general Help and Support page for more information on counselling guidance.