What does that mean?

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You may or may not be familiar with some of the terminology used surrounding the diagnosis of a life-limiting illness. Here is a description of terms or phrases you might come across.

Life-limiting illness is a term used to describe an incurable condition that will shorten a person’s life, though they may continue to live active lives for many years. There is a wide range of life-limiting illnesses, including heart failure, lung disease, neurological conditions, such as Parkinson’s and Multiple Sclerosis, and cancer that is no longer responding to treatment intended to cure.

Terminal illness is usually used to describe a life-limiting illness that is thought to have progressed to the final or terminal stage. There is no precise definition for this terminal stage, but it is typically used for a person considered to be within the last 12 months of life. Of course, it is not always easy to know when a person has reached this stage, or how much more time they have.

End of life care is support for people who are approaching death, usually those considered to be within the last 12 months of life. It helps them to live as well as possible until they die, and to die with dignity. It also includes support for their family or carers. End of life care includes palliative care.

Palliative care is an approach that improves the quality of life of patients faced with the challenges of living with a life-limiting illness. It focuses on the individual’s comfort and takes into account the emotional, physical and spiritual needs and goals of the person being cared for. Palliative care is open to all and aims to meet the needs of people from all cultures and communities, and extends beyond the patient to supporting their family and close friends. It is provided by all clinicians involved in a patient’s care, in particular GPs and district nurses.

Specialist palliative care encompasses hospice care (including Inpatient services, Day Therapy, Community service and Hospice at Home) as well as a range of other specialist advice, support and care such as that provided by hospital palliative care teams. It may also include support from the hospice physiotherapists, occupational therapists, social workers and chaplain. Specialist palliative care is available when patients’ physical, emotional, social or spiritual needs are very complex. For example, patients whose symptoms cannot be managed in a timely way by their usual care team, including their GP, nurse or hospital consultant.

Advanced Care Planning (ACP) and Preferred Priorities for Care (PPC) are ways of making people aware of your wishes. By recording your preferences it will help to make sure that your wishes are taken into account. It will let health and social care professionals know what your wishes are and what is particularly important to you should you become too unwell to be able to tell anyone. Your wishes can be recorded using the ACP form or the PPC form. You can always change your mind and update your ACP or PPC, if you wish.

Service user – this term includes people who use our services as patients or as carers/families. We use the term service user in general, but use the term patient where it is most appropriate.

Keyworker is a member of staff who is allocated to a patient and takes on the responsibility for co-ordinating the provision of palliative care for the individual, their family and friends. They will be the individual’s main contact for anything concerning their care.

Clinician is a healthcare professional, such as a doctor, nurse, physiotherapist, involved in clinical practice.

DNACPR is an abbreviation of ‘Do Not Attempt Cardiopulmonary Resuscitation’. These advance management plans may be called DNAR orders or Allow Natural Death decisions in some healthcare settings. You may also hear ‘Do Not Resuscitate’ or DNR, which means the same as DNACPR.