An introduction to end-of-life care

End-of-life care is care that seeks to help people live their remaining days in comfort and dignity. It focuses on providing physical, emotional, spiritual, and social support for those nearing the end of their lives.

The importance of end-of-life care

The importance of end-of-life care cannot be understated. It provides physical comfort and emotional support and helps ensure that individuals have control over how they will spend their final days. It also allows them to say goodbye to loved ones meaningfully.

For families going through this difficult time, end-of-life care helps provide closure by allowing them to create lasting memories together.

By delivering essential physical, emotional, spiritual, and social support throughout this process, end-of-life caregivers play an invaluable role in helping individuals and families cope with the loss at hand in a dignified way.

What are the five priorities of end-of-life care?

1. Understand the individual’s wishes – it is important to discuss the person’s specific preferences for end-of-life care.
2. Create a plan of action – end-of-life care should be tailored to each individual situation.
3. Provide emotional support – it’s important to create an environment where the individual feels accepted and respected, with caregivers providing person-centred care and comfort.
4. Physical needs – proper pain management is essential in end-of-life care and may involve medication, positioning, or other methods of alleviating discomfort.
5. Spiritual needs – accessing spiritual guidance can help individuals feel connected to their faith, community or beliefs during difficult times.

Common signs that end-of-life care may be needed

End-of-life care will vary for each individual and this can make recognising when this time is close very difficult for families and carers. However, there are some common signs that may indicate that end-of-life is approaching. It is important to recognise that these are only indicators and some of these will be seen in people who are not at this stage or absent in those who are.

Physical decline

Typically, a physical decline will be noticeable with significant change in appetite and/or decreased food and fluid intake. A person will display increased weakness, fatigue and decreased mobility. When monitoring an individual you may see changes in breathing patterns, such as irregular, shallow, or laboured breathing and their extremities (hands, feet) may become cool to touch, display mottling (bluish or purplish patches), or cyanosis (bluish discoloration) of the skin.

Cognitive and sensory changes

An individual may experience periods of increased confusion and disorientation. They may slowly withdraw from social interaction and become less responsive to communicating with those around them. They may notice changes in vision and hearing and become more sleepy and lethargic.

Emotional and psychological changes

Often, people will express a sense of completion, letting go, or seeking reconciliation. They may want to see family members or friends to say goodbye. Equally, they may experience restlessness and agitation and withdraw from relationships at this stage.

Vital sign changes

An individual’s vital signs will begin to show significant changes with blood pressure, pulse and temperature all being affected.

Caring for someone on an end-of-life pathway

Talking

Maintaining open and honest communication with the individual and fully involving them in decision-making (where possible) is important. Enabling a safe space for them to express their fears and wishes and giving them an opportunity to say what is on their mind can relieve anxiety and enable a person to rest. Being aware of the individual’s wishes can make their care easier and gives them space where they can share their emotional and spiritual needs. Consider whether they wish to involve a spiritual or religious advisor at any point. Being aware of a person’s beliefs and desires can help in later stages.

Mouthcare

Mouth care is an important aspect of end-of-life care, it maintains dignity and comfort. Good mouthcare will support communication, swallowing and eating and will prevent complications that will impact quality of life at this critical time.

Care should be completed in a semi upright position to prevent the risk of choking. The mouth should be gently cleaned and the tongue and teeth brushed using a soft toothbrush at least twice a day. Dentures should be removed, cleaned, and replaced in the individual’s mouth. Frequent sips of fluids should be offered, or single use sponge swabs wiped around the mouth to keep it hydrated and prevent drying.

Regularly moisturising the lips with lip balm can help to prevent dryness and discomfort. A person may also enjoy their favourite flavours being placed on their lips. Mouthwash or oral sprays to alleviate dryness and maintain oral hygiene can also be used.

Preventing bedsores and pressure ulcers

As individuals approach the end of life, their skin tends to degrade, increasing their vulnerability to pressure ulcers, commonly known as bedsores. Factors contributing to this heightened risk include inadequate nutrition, prolonged immobility, and reduced sensation.

In the case of immobility, prolonged pressure on specific skin areas can cause the formation of bedsores. These can evolve into painful lesions that carry a significant risk of infection. Optimising nutrition, frequent movement, and vigilant skin care are therefore essential in preventing and managing this issue.

There are several things that can be done to reduce and manage bedsores:

1. Frequent repositioning can alleviate pressure on vulnerable areas; ideally, movement should occur every two hours. However, such activity must be attuned to the individual’s condition, with consideration given to their comfort and pain levels prior to shifting them. High-risk areas for pressure sores include bony areas like the heels, elbows, hips and base of the spine. Additionally, points where medical equipment like glasses, catheters, or oxygen tubes rub against the skin are susceptible. It’s crucial to ensure that such tubes are neither chafing the skin nor trapped under the body. While certain areas are more susceptible, it’s important to recognise that any region of the body can be at risk of developing a pressure sore.
2. The strategic use of pillows or foam wedges can support the body’s alignment, reducing pressure points. If required, special equipment like pressure-relieving mattresses or cushions can be bought. Carers should avoid dragging individuals across beds or chairs as this friction can damage fragile skin and induce pressure sores. Slide sheets can facilitate safer and more comfortable movement when necessary.
3. Maintaining clean, dry and wrinkle-free bedding is critical. Creases can irritate sensitive skin areas, potentially leading to pressure sores.
4. Incontinence should be carefully managed as moisture can contribute to pressure sore development. It’s vital to gently clean and dry the area, applying a barrier cream if needed.
5. Early detection is essential, which necessitates regular inspections of the skin for integrity. Indicators of emerging pressure sores include persistent redness or skin that doesn’t blanch when pressed.

Personal hygiene

Maintain regular bathing or sponge baths to keep the person clean and comfortable. Be gentle when washing and drying the person’s skin to avoid irritation and use moisturisers to prevent dryness and keep the skin hydrated.

Pain and symptom management

It is important to work closely with the healthcare team to understand and manage an indivudual’s pain and other symptoms effectively. Medication should always be given as prescribed and it is important to monitor their effectiveness so adjustments can be made if required.

Self-care for caregivers

Caregivers should take breaks, both physically and emotionally, to recharge and prevent burnout. It is important to seek support from family, friends, or support groups to share your feelings and experiences. Every individual’s end-of-life journey is unique, so it’s crucial to tailor care to their specific needs and preferences. We are here to support with personalised guidance and support throughout the process.

To find out more about we can support you and your loved ones with end-of-life care, speak to our team or make an enquiry.