End-of-life care describes the type of support available for people who are in the final stages of their life, by assessing what the patient needs and wants from their care.¹

The aim of end-of-life care is to help people live as comfortably as possible until they pass away. Throughout the process, the patient’s family or carers will also be offered physical, emotional and spiritual support.

It is very important that the patient’s wishes are considered, from the start of end-of-life care until the end. This includes answering the patient’s emotional and cultural needs.

The treatment team will talk to the patient and their carers to discuss and develop an end-of-life care plan.

Talking about end-of-life care

End-of-life care can be a difficult subject to talk about.¹ Many patients may also have an idea of how they wish to be treated at the end of their life. They may wish to avoid certain treatments or be treated in a specific environment. Being proactive about seeking advice from the patient's treatment team and discussing the plan as early as possible can help to ensure that the care provided meets the needs and wishes of the patient and their loved ones.²

Tips for talking about end-of-life care:

Start the conversation early.² When they feel ready, make sure that your loved one has the opportunity to express their wishes about how they would like to receive care
Be open. Keep open conversations with your loved one. Their desires for end-of-life care may be different to what you expect. It is important that your loved one receives care that meets their needs
Talk to healthcare professionals.¹ Sometimes, healthcare professionals may delay the conversation about end-of-life care until they are certain of the course of the disease. Speak to the treatment team early on to make sure you get all the information you and your loved one need.

Who provides end-of-life care?

Different health and social care professionals may be involved in end-of-life care, depending on the patient’s needs. For example, care can involve hospital doctors and nurses, hospice staff, counsellors and occupational therapists.

If care is being provided at home or in a care home, the patient’s doctor has overall responsibility for their care. Community nurses may make regular visits to your home, and family or friends will be fully involved in the process to help coordinate the best care for the patient.

When does end-of-life care begin?

End-of-life care should begin as soon as it is needed. It may last just a few days, or for months or years.

QUICK TIP

When you feel ready to approach the topic of end-of-life care, speak openly with your loved one and their treatment team. They are experienced in helping patients and carers through end-of-life care, while always being sensitive to the unique needs and wishes of each patient

What should I expect in the last few days?³

As the person approaches the end of their life, you may start to notice changes in their symptoms. Not everyone will experience the same symptoms or all of them. The changes might be apparent over weeks, days or even hours:

Signs that somebody is approaching the end of life:

Not wanting to eat or drink very much or at all. Swallowing may become difficult
Losing physical energy, the ability or desire to talk, and signs of withdrawing from family and friends
Feeling sleepy or drowsy most of the time, being very inactive and eventually becoming unconscious. Often patients will want to stay in bed or a comfortable chair rather than getting up
Changes in breathing rate or pattern that are out of the ordinary. As the body becomes less active, the need for oxygen reduces. There may be long pauses between breaths and the tummy may move up and down more than the chest
Changes in skin colour and temperature. Skin may become pale, moist and slightly cooler
Involuntary twitches. These are normal and don’t mean that someone is distressed or uncomfortable

Considering hospice care

Hospice care offers support and care for patients and their families in the end stages of disease. The goal is to make sure the patient is as comfortable as possible and keeps his or her dignity through to the end of life. Hospice care also offers emotional support to the carer and family.⁴

The hospice team is made up of many different people, such as your regular doctor, a hospice doctor, nurses, social workers, members of the clergy, counsellors, and home health aides. They work with you and your loved one to make a care plan that meets your loved one's individual needs.

A loved one passing away is often one of the most difficult periods in a family member or friend’s life. It is important to spend time with family and friends to remember your loved one and support each other through the grief process.

Carer of someone with pulmonary fibrosis

“Never cope alone as a carer there is always someone there to listen and understand how you feel”

Key takeaways

Planning for the end of life ensures the patient’s wishes can be carried out, including their religious or cultural needs

Start the conversation early with your loved one and their treatment team to ensure the necessary steps can be taken

Various specialists can provide end-of-life care. Hospice care is also an option

Lewis D, Scullion J, et al. Palliative and end-of-life care for patients with idiopathic pulmonary fibrosis: challenges and dilemmas. Int J Palliat Nurs. 2012;18(7):331–337.
Bajwah S, Koffman J, Higginson IJ, et al. ‘I wish I knew more ...’ the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals. BMJ Support Palliat Care. 2013;3(1):84–90.
British Lung Foundation. What are the physical signs in the last weeks or days? Available at: https://www.blf.org.uk/support-for-you/end-of-life/physical-signs [Accessed March 2022].
Hospice UK. What is hospice care? Available at: https://www.hospiceuk.org/about-hospice-care/what-is-hospice-care/ [Accessed March 2022].