Palliative care for older people: what it is and how to access it

The NHS says that if you have an illness that cannot be cured, palliative care aims to make you as comfortable as possible by managing pain and other distressing symptoms, and that it also involves psychological, social and spiritual support for you and your family or carers. It calls this a holistic approach because it deals with you as a whole person, not just your illness.

The British Geriatrics Society (BGS) defines palliative care as the active care of patients whose disease is not responsive to curative treatment, with control of pain, other symptoms and social, psychological and spiritual problems paramount. It may be delivered by any health care professional, with specialist palliative care provided by those with specialist training, usually for more difficult or complex cases.

The BGS notes that most people die at an older age and that many die of long-term conditions, so very few people die unexpectedly. It says that although most people would prefer to die at home, relatively few currently do so and most die in hospital. Cancer patients were traditionally seen as the main recipients of palliative care, but it is increasingly recognised that good end of life care matters in any incurable disease.

The BGS also lists issues identified in end of life care for older people: older people are less likely to receive appropriate pain control than younger people, especially those with dementia; they are less likely to receive hospice care; in care homes, care may be limited by staff training, poor symptom control and a lack of psychological and emotional support; and having several conditions and drug reactions can make symptom control more difficult. Knowing these gaps exist can help families ask direct questions.

Marie Curie explains that palliative care is for people with a terminal illness at any time during their illness, while end of life care is usually for people in the last year of life. People often have palliative care for some time before getting end of life care. The NHS says 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.

The NHS includes in that group people with advanced incurable illness such as cancer, dementia or motor neurone disease, people who are generally frail and have other conditions that mean they are expected to die within 12 months, people with existing conditions who could die if their condition suddenly gets worse, and people with a sudden life-threatening event such as a serious accident or stroke. Marie Curie notes that having end of life care does not necessarily mean someone will die very soon: some people have it for a year or more.

The BGS lists the common symptoms requiring treatment in older people as pain, breathlessness, nausea and vomiting, anorexia, constipation, depression, cough, delirium, dysphagia, insomnia, incontinence and anxiety. It says staff involved in palliative care of older people need adequate training in symptom control and access to specialist advice and support.

Marie Curie says that in the last weeks, days or hours of life it is normal for people to eat and drink less than usual or not at all. It suggests keeping the mouth moist and offering small amounts of fluid or ice chips, and checking with the doctor or nurse about whether fluids through a drip might be suitable.

The NHS says many health professionals provide palliative care as part of their jobs, including GPs and community nurses, while some people need additional specialist palliative care from consultants in palliative medicine, specialist nurses, or specialist occupational therapists or physiotherapists. For end of life care, the team may include hospital doctors and nurses, GPs, community nurses, hospice staff, counsellors, social care staff, chaplains of all faiths or none, and therapists.

If you are cared for at home or in a care home, the NHS says your GP has overall responsibility for your care, with community nurses usually visiting and family and friends often closely involved.

NHS inform says to ask a doctor, nurse, social care worker or other member of your care team about palliative care, and that if you need more specialist help your care team can contact a specialist palliative care service. The NHS says your first step is to speak to your GP or call the number your healthcare professionals have given you, and part of their job is to help you understand which services are available locally. Marie Curie suggests that if the person is in hospital or a hospice you speak to their consultant or the nurse in charge, and that social care questions go to the local council.

Marie Curie lists what end of life care can involve: managing physical symptoms, emotional and spiritual support for the person and family, help with everyday tasks such as washing or dressing, talking about the person's needs and wishes, and practical support with things like making a Will or financial support.

The NHS says it is a good idea to think about legal issues to help you plan, including creating a lasting power of attorney so people of your choice can make decisions about your care if you are no longer able to. The BGS notes that advance directives can provide helpful information for clinicians but may be of limited value if they do not describe the precise clinical situation in advance, and that under the Mental Capacity Act patients can nominate a health advocate to help in decision making.

Marie Curie says services are free for people who are ordinarily UK residents. Palliative and end of life care is provided by the NHS, hospices and charities, and funding arrangements for care homes or nursing care can be separate, so ask the local council or care team what applies. Private nursing or care-at-home services also exist; whichever you use, make sure the GP and community team know the plan so that wishes and medicines are recorded consistently.