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Who can make end-of-life care decisions?
In the UK, a person with a terminal illness can usually choose their own end-of-life care if they have the mental capacity to do so. This means they understand the information given, can weigh up the options, and can communicate a decision.
They may choose where they want to be cared for, what treatments they do or do not want, and how they wish pain and symptoms to be managed. These choices should be discussed with healthcare professionals and recorded in a care plan where possible.
What if someone cannot decide for themselves?
If a person no longer has mental capacity, decisions are made in their best interests under the Mental Capacity Act in England and Wales. In Scotland and Northern Ireland, different legal frameworks apply, but the same principle of acting in the person’s best interests is central.
Family members and friends can share information about the person’s wishes, beliefs, and values. However, they do not automatically have the legal right to decide unless they have been formally appointed to do so.
Who can be legally involved?
A person can appoint someone to make decisions on their behalf using a Lasting Power of Attorney for health and welfare, if they still have capacity. This appointed attorney can help decide on medical treatment and care arrangements if the person later loses capacity.
Doctors and other healthcare professionals also play a key role. They must explain options clearly, respect valid decisions, and work with the person and those close to them to agree the most appropriate care.
Can someone refuse treatment?
Yes, a competent adult can refuse treatment, even if that decision may shorten their life. This can include refusing hospital admission, surgery, ventilation, feeding tubes, or resuscitation.
People may also create an Advance Decision to Refuse Treatment, sometimes called an ADRT. If valid and applicable, this is legally binding in England and Wales.
How can wishes be recorded and respected?
It is helpful to discuss preferences early with a GP, specialist nurse, or palliative care team. Choices can be written into an advance care plan, which may include preferred place of care, pain relief, and spiritual or practical needs.
People can also make a Do Not Attempt Cardiopulmonary Resuscitation decision, often called a DNACPR, if appropriate. Clear communication helps ensure care respects the person’s wishes as much as possible.
Frequently Asked Questions
Terminal illness end-of-life care choices are the medical, emotional, and practical options available to a person living with a life-limiting illness as they approach the end of life. These choices may include hospice care, palliative care, symptom management, advance care planning, comfort-focused treatment, and decisions about where and how care is provided.
Terminal illness end-of-life care choices focus on comfort, quality of life, and honoring the person's goals when a cure is no longer possible or no longer desired. Curative treatment aims to eliminate or control the disease itself, while end-of-life care choices often prioritize symptom relief, dignity, and support for the patient and family.
Hospice care is a form of terminal illness end-of-life care choices for people who are expected to have a limited life expectancy and who choose comfort-focused care rather than treatment intended to cure the illness. Hospice typically includes pain and symptom management, emotional and spiritual support, and help for family caregivers.
Palliative care is specialized care that relieves pain, symptoms, and stress related to serious illness and can be provided alongside curative or life-prolonging treatment. In terminal illness end-of-life care choices, palliative care often becomes the main focus when comfort and quality of life are the primary goals.
Terminal illness end-of-life care choices can include medications, therapies, and supportive services to manage pain, shortness of breath, nausea, anxiety, agitation, fatigue, and other symptoms. The care plan is usually individualized so the person is as comfortable as possible.
Terminal illness end-of-life care choices can be provided at home, in a hospice facility, in a hospital, in a nursing home, or in another care setting depending on the person's needs and preferences. The best setting is often the one that best supports comfort, safety, and family involvement.
Eligibility depends on the specific service, but terminal illness end-of-life care choices are generally appropriate for people with a serious, progressive illness and a limited life expectancy or a strong preference for comfort-focused care. A clinician or hospice team can help determine whether a person meets the criteria for particular services.
Terminal illness end-of-life care choices are usually decided through conversations between the patient, family members or caregivers, and the healthcare team. These discussions consider the person's values, prognosis, symptoms, cultural or spiritual beliefs, and desired level of treatment.
Advance directives are important in terminal illness end-of-life care choices because they document a person's wishes for medical care if they can no longer speak for themselves. Common examples include living wills and healthcare power of attorney documents.
Yes, terminal illness end-of-life care choices can include stopping or not starting aggressive treatments such as chemotherapy, intensive care, or resuscitation when those treatments no longer match the person's goals. This decision is usually made with guidance from the care team and should reflect the patient's informed preferences.
Yes, terminal illness end-of-life care choices can include continuing treatments that improve comfort or support meaningful goals, even if they are not curative. Some people choose a mixed approach that combines symptom-focused care with selected disease-directed treatments.
Terminal illness end-of-life care choices often include education, respite, counseling, and practical assistance for family caregivers. This support can help caregivers understand what to expect, manage daily care tasks, and cope with emotional stress.
Terminal illness end-of-life care choices may include counseling, social work services, chaplaincy, support groups, and grief support. These services help the patient and family address fear, sadness, uncertainty, and other emotional concerns.
Terminal illness end-of-life care choices can include spiritual care from chaplains, faith leaders, or counselors who respect the person's beliefs and values. Spiritual support may help with meaning, forgiveness, legacy, and preparation for death.
Planning for terminal illness end-of-life care choices should include the person's goals, symptom management preferences, preferred care setting, emergency plans, resuscitation wishes, decision-makers, and any cultural or spiritual needs. It is also helpful to review what matters most to the person day to day.
Terminal illness end-of-life care choices often include discussions about whether to attempt resuscitation if the heart or breathing stops. The healthcare team can explain the likely benefits and burdens so the patient can make an informed choice that matches their goals.
Yes, terminal illness end-of-life care choices can usually be changed as the person's condition, symptoms, or preferences change. It is important to revisit decisions regularly and update the care plan and documents when needed.
Terminal illness end-of-life care choices help preserve dignity and comfort by focusing on symptom relief, respect for preferences, privacy, and compassionate communication. The goal is to support the person as a whole individual, not only to treat the illness.
Useful questions about terminal illness end-of-life care choices include what services are available, how symptoms will be managed, who will coordinate care, what emergencies may require a hospital visit, and how family caregivers will be supported. Asking about costs, eligibility, and after-hours help can also be important.
To get started with terminal illness end-of-life care choices, speak with the person's doctor, nurse, social worker, or a hospice or palliative care team about current symptoms, prognosis, and care goals. They can help explain available options and create a plan that matches the person's wishes.
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