Palliative care is defined by the World Health Organization as: "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual."
As Benjamin Franklin wrote in 1789: "... in this world nothing can be said to be certain, except death and taxes." Although this may be true, a quick internet search tells us there is an awful lot more written about taxes than there is about death and dying. Why is this?
Perhaps it's because we don't want to acknowledge this truth - a big part of palliative care is about helping people to talk more openly about dying, death and bereavement, and to make plans for the end of life. As a society, our lack of openness affects the care that is available to us and to our families. If we don't talk about what we want to happen to us, there's little chance that we will get it.
What is it?
Palliative care is about life-threatening illness. It's about how we adapt to having such an illness and how we cope with it. It's not about dying itself, but about accepting that dying is a natural part of everybody's life cycle. You might think that palliative care is about painkillers and medicines to stop you being sick; however, good palliative care is so much more than that. Good palliative care is as much about talking about death and dying as it is about medicines.
What palliative care is not
Palliative care is not about the last few days or hours of life. It's not about being given medicines that will speed up our demise. It's not about our doctor having given up on us. It's absolutely not about being denied food and water so that we die of starvation, and it's not about hopelessness. It's about hope. But instead of hope being for a cure, hope becomes about making sure that life is as good as it possibly can be, right until the end.
When will I need it?
Whenever it's likely to help. Palliative care can start as early as when a life-threatening condition is suspected. It can carry on through your diagnosis and then on to your cure or living with an illness to death. It can also carry on into bereavement support for your family and friends.
What is palliative care?
Palliative care is essentially about providing the care we need to make sure that we are able to live our lives as well as possible right to the end of our lives. A palliative treatment is one that isn't expected to cure a condition. However, palliative care involves much more than this.
Many people fear the idea of palliative care as they wrongly think that if they are being offered palliative care, they must be dying. Whilst this might have been the case in the past, nowadays, partly due to medical advances, many more people now 'survive' killer diseases. Living with a life-threatening disease is now very common and many people will receive palliative care for an illness that won't ultimately be what leads to their death - which may well be many years, if not decades, later.
What does palliative care offer?
The aims of palliative care are:
- To affirm life but also to regard death and dying as normal.
- To provide relief from pain and any other symptoms.
- To neither speed up nor delay death.
- To encourage psychological and spiritual needs to be brought into mainstream patient care.
- To provide the support people need to allow them to live as actively as possible until they die.
- To offer support to a patient's family and friends during the patient's illness and when they are bereaved.
Who is palliative care for?
Modern palliative care has its roots in the hospice movement that was begun by Dame Cicely Saunders. She believed that no one should be told: "... nothing more could be done", as "there is always so much more to be done."
For many years, palliative care meant caring for people who had been diagnosed with incurable cancer. Nowadays though, palliative care is being extended to anyone with an illness which is life-threatening. So it continues to be appropriate for people with cancer but it is also becoming available for people with other life-threatening illnesses, such as heart failure, chronic obstructive pulmonary disease (COPD) and dementia.
Some aspects of palliative care can even be used in combination with treatments that are expected to cure a disease - if that extra care will ease suffering and improve quality of life.
Who provides palliative care?
There are two groups of people who provide palliative care: non-specialists and specialists.
Who are the non-specialists?
These are the people who are involved in day-to-day care of patients, both at home and in hospital.
For example, in the UK, there will be a multidisciplinary team (MDT) in the community. An MDT is a team of people who have different jobs (disciplines). The MDT will usually be made up of:
- District (community) nurse(s).
- General practitioner(s).
- Practice nurse(s).
- Macmillan nurse - a specialist palliative care nurse, usually attached to a hospice or hospital department.
- Social worker.
- Practice manager, for administrative support.
The team may be much bigger depending on individual circumstances. For example, it may well include informal carers, such as family, friends, neighbours or volunteers.
The professional members of this team will meet at least every three months to discuss everyone in their practice with palliative care needs, to ensure that they are being met. This involves making sure that there is someone who the patient knows by name. This person will keep them involved and make sure that they have the opportunity to talk about how they would like their needs to be met. This will include end-of-life care if appropriate.
This team should be able to provide palliative care under normal circumstances but may need to ask for help or advice from specialist palliative care services.
Who are the specialists?
These are the people whose work is likely to concentrate particularly on people who need palliative care. They may provide this care in hospital, in a hospice, at your home or at a day centre, as well as being available to give telephone advice. For example:
- Specialist palliative care physician.
- Specialist palliative care nurse - for example a Macmillan or Marie Curie nurse in the UK.
- Social worker.
- Art and music therapists.
- Bereavement therapist.
- Dietician - can provide personal advice if you have lost weight and can't face food.
- Occupational therapist - to help you overcome practical difficulties in everyday life.
- Speech therapist - provides advice not just on speech problems but swallowing too.
- Complementary therapist - providing, for example, massage or aromatherapy.
- Religious and spiritual carers - their kindness, compassion and deep listening are appreciated by patients and their families of all and no religion.
- People from voluntary organisations, such as Citizens Advice.
- Hospice volunteers - may provide anything from hairdressing to gardening to bereavement counselling.
How does palliative care help?
There are many different issues that palliative care can provide help with:
- People have lots of reasons to need emotional support when told they have a life-threatening illness. Counselling may help them to adjust and cope with the effect of their disease and its treatment.
- Support may also be needed to help someone adjust back to normal after treatment - worries about recurrence and the future are common.
- Help may include one-to-one counselling, support groups, stress management and relaxation courses.
- It can be really difficult to talk openly to family and friends about feelings and thoughts about the future. An experienced professional can help both the patient and family and friends, by listening and advising.
- Help can be particularly needed when talking to children about illness.
Symptoms of disease and side-effects of treatment
This is the area that palliative care has traditionally been very good at.
- Sexual problems are common. This may be due to the disease itself or to the treatments. Tiredness, depression and anxiety may also play a part.
- A desire for a woman to keep her fertility may also be important.
- Many people who are diagnosed with a life-threatening illness are of working age.
- Professional advice may help someone to keep in work or to return to work once fit enough.
- Losing weight and not having an appetite are common effects of both illness and treatment.
- A dietician can be an important source of advice.
- This can get complicated; airlines may insist on a 'fitness to travel' certificate and travel insurance may be difficult to obtain.
- You may need advice on what to do if you become ill in a foreign country.
- Some medicines can't be taken into other countries.
- These are all issues that can be addressed by a provider of palliative care.
Mortgages, pension, loans and insurance
- Getting a diagnosis of a life-threatening illness can have a significant impact on finances.
- Many palliative care services will be able to offer advice on financial matters, whether it is helping to fill out claim forms or referring someone on for expert advice.
Being unable to work, whether temporarily or permanently, can have a catastrophic effect on personal finances. There may be benefits that you are entitled to or charitable grants that you can get help to claim.
- For people who have a religious belief, talking to a faith minister will be important.
- Many people, however, don't have a religious belief but that doesn't mean that questions won't arise about what death means and the meaning of life. Palliative care givers won't have all of the answers but they will have the ability to listen well.
Further reading & references
- WHO Definition of Palliative Care; World Health Organization
- Raising awareness of dying, death and bereavement; Dying Matters
- Palliative Care Explained; National Council for Palliative Care (NCPC)
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but makes no warranty as to its accuracy. Consult a doctor or other healthcare professional for diagnosis and treatment of medical conditions. For details see our conditions.
Dr Jacqueline Payne
Dr Helen Huins