End of Life Care Planning

End of life care encompasses the support and medical care given to people in the last months or years of life, as well as the care given in the final days and hours. It is distinct from palliative care (though the terms are often used together) — palliative care is a broader concept of managing symptoms and improving quality of life for people with serious illness at any stage.

Good end of life care has several goals: managing pain and symptoms effectively; enabling the person to be in their preferred place of death; ensuring their spiritual, emotional, and practical needs are met; and supporting their family and loved ones before and after death.

In England, end of life care is supported by a network of NHS services, hospices (many charitable), care homes, and community care teams. The NHS End of Life Care Strategy and the Leadership Alliance for the Care of Dying People provide frameworks for quality care. All NHS and social care providers should have an end of life care policy.

Three types of document support advance care planning:

• Advance Statement — A written record of your wishes, values, and preferences about care. Not legally binding, but must be considered by healthcare professionals when making decisions about your care. Can cover anything from where you want to be cared for, to dietary preferences, religious needs, and whether you want to see specific people.
• Advance Decision to Refuse Treatment (ADRT) — A legally binding document in which you refuse specific medical treatments in specific circumstances, effective when you lack capacity. If valid and applicable, it must be followed. For it to apply to life-sustaining treatment, it must be in writing, signed, and witnessed.
• Preferred Priorities for Care (PPC) — A structured advance care planning document widely used in England, often held in your home by community nursing teams. It records your preferred place of care and death, your priorities, and any concerns.

A Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision is a clinical decision made by a doctor (ideally with your input) that CPR should not be attempted if your heart stops. It is a medical order, not an advance decision, but it can be influenced by your expressed wishes.

Practical planning alongside clinical care planning includes:

• Making or updating a will — A valid will ensures your estate is distributed according to your wishes;
• Ensuring an LPA is in place — If you lose capacity before you die, an LPA ensures someone you trust can manage your finances and healthcare decisions;
• Registering with a GP and palliative care team — Being on the GP practice's register of patients with life-limiting illness ensures you receive coordinated end of life care;
• Funeral planning — Considering and documenting funeral preferences (burial or cremation, service wishes) saves your family significant decisions at a difficult time. Some people pay for a funeral plan in advance.

Talking to your family and loved ones about your wishes — even when it is difficult — is one of the most valuable things you can do. Research consistently shows that families of people who have had these conversations report less distress and greater confidence they are honouring the person's wishes.

The NHS Continuing Healthcare (CHC) Fast Track pathway is specifically designed for people who are rapidly deteriorating and have a primary health need arising from a condition that is likely to be leading to the end of their life. It bypasses the standard multi-disciplinary team assessment and the Decision Support Tool process entirely. Instead, a single clinician — a GP, a hospital consultant, a palliative care specialist, or a senior nurse — can complete a Fast Track Assessment Tool and refer directly to the Integrated Care Board (ICB) for urgent CHC funding approval. The process should be completed within 48 hours and often within 24 hours in genuine emergencies.

Fast Track CHC can fund: urgent placement in a nursing home or hospice; urgent provision of nursing and personal care at home; and equipment and adaptations needed at speed. Where someone wishes to die at home, Fast Track CHC can fund the intensive package of care — including night sitting, multiple care visits per day, and specialist nursing — that makes this possible. Without Fast Track, a person may be stuck in hospital or in an inappropriate care setting in their final days simply because the standard CHC pathway takes weeks.

If you believe Fast Track CHC should be considered for someone in your care who is approaching death, contact the GP or the palliative care team and ask them explicitly to consider a Fast Track referral. You should also notify the hospital social work team if the person is in hospital. NHS guidance makes clear that where there is a terminal diagnosis with a prognosis of weeks rather than months, Fast Track CHC is the appropriate pathway. Delays in initiating Fast Track are a common cause of complaints and mean families must advocate firmly. If the ICB declines a Fast Track referral that appears to be clinically indicated, seek advice from a CHC specialist or a patient rights organisation such as the Beacon CHC service.