Palliative care

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 to the very end of our lives. A palliative treatment is one that isn't expected to cure a condition; it's one that usually provides relief from pain or discomfort. However, palliative care involves much more than this.

Many people fear the idea of palliative care as they think that, if they are being offered palliative care, they must be dying. Palliative care is usually offered to people who have a condition which cannot be "cured" but many people may live with their incurable conditions for several years or more. Living with a life-limiting disease is now very common and many people will be offered palliative care during this time.

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End of life care

End of life care is a term used to cover the issues you need to think about and plan for, when you are approaching death. It is a very wide area that covers many topics.

by Dr Hayley Willacy, FRCGP

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 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.

Even if you do not need active palliative care and therefore do not have regular contact with the palliative care team, you will often be able to contact them for specific needs or enquiries.

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 was largely for people who had been diagnosed with incurable cancer. Nowadays palliative care is offered to anyone with an illness which is life-limiting. It continues to be appropriate for people with many types of cancer but it is also available for people with other life-threatening illnesses, such as heart failure, chronic obstructive pulmonary disease (COPD) and dementia.

Palliative care continues to have an important role at the end of life. Palliative care teams often provide invaluable help and support to people who are dying, and to their families. They have a great deal of expertise about the drugs and treatments that might be offered as well as about symptoms and signs that may cause anxiety to people or their families. Palliative care can help people to accept the reality of death; it does not attempt to delay death but neither does it speed it up.

What palliative care is not

However, palliative care is not only about the last few days or hours of life.

Palliative care can start as early as when a life-threatening condition is suspected. It can carry on throughout your diagnosis.

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).

• Pharmacist.

• 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 regularly with a specialist palliative care nurse to discuss everyone in their practice with active palliative care needs, to ensure that they are being met.

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 (these may be Macmillan or Marie Curie nurses but also may be local hospice nurses).

• Counsellor.

• Pharmacist.

• Social worker.

• Psychologist.

• Psychiatrist.

• 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.

What is included in palliative care?

There are many different issues that palliative care can provide help with:

Emotions

• 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.

Communication

• It can be 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.

Sex life

• 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.

Work

• 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.

Dietary advice

• Losing weight and not having an appetite are common effects of both illness and treatment.

• A dietician can be an important source of advice.

Travel

• 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 or need letters to explain their use.

• 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.

Financial support

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.

Spiritual needs

• For people who have a religious belief, talking to a faith minister may 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.