Ensuring Quality End-of-Life Care for Your Loved One

If your loved one is nearing the end of their life, you may be looking into end-of-life care. It can be a scary and uncertain time.

Towards the end of your loved one’s life, they may need more support than family or friends can provide. They may need personal care, such as washing and continence support, medical care such as pain management, and emotional comfort. And you, along with the rest of their family and close friends, will need support too. 

When you first look for end-of-life care, it can feel overwhelming. We’ve put together this guide to help you navigate what end-of-life care involves, and support you through your decisions. 

What is end-of-life care?

End-of-life care is there to support your loved one to live as well as possible, right up until the final stages of their life. The goal is for them to be as comfortable as possible, both physically and emotionally.

The terms end-of-life care and palliative care are often used interchangeably. However, end-of-life care is just one of the five stages of palliative care. Palliative care is the support provided to someone with a terminal condition, even if they aren’t yet near the end of their life.

The five stages of palliative care are: 

1. Initial assessment and planning for care
2. Emotional preparation
3. Early stage care
4. End-of-life care
5. Bereavement support for family and caregivers

Palliative and end-of-life care both include pain management and dealing with other physical symptoms. They focus on supporting the person as a whole, and not just treating medical conditions. They might include psychological support, spiritual input, or activities such as music therapy or exercise.

When is it time to arrange end-of-life care?

 End-of-life care is usually a continuation of palliative care. 

The right time to arrange end-of-life care will vary for everyone. It tends to begin when someone is believed to be in the last 12 months of their life. However, if your loved one needs extra support at home or is struggling to manage their medical condition, you can arrange personal care or encourage them to talk to their healthcare team before this time. 

When your loved one was first diagnosed with a terminal or life-limiting illness, they may have been referred to a palliative care team. This is the group of healthcare professionals who are involved in their care. They should be in regular contact with your loved one. The main point of contact will usually be a clinical nurse specialist or a GP.

People who are near the end of their life should be seen regularly by a doctor. If the doctor believes that they will die soon, they should explain this to them honestly and sensitively. 

What does end-of-life care entail?

End-of-life care supports your loved one as a whole, and doesn’t just manage symptoms. It’s there to help people live as comfortably as possible until the end of their life.

There will probably be a lot of different people involved in your loved one’s end-of-life care. These may include:

• Care workers, who may provide personal care such as washing and medication support, as well as companionship
• Nurses, including community nurses who may come to the home to provide on-going treatment and pain management support
• Doctors, including your loved one’s GP and any specialists involved in their case
• Social workers, who might help you and your loved one access necessary services and understand treatment plans
• Occupational therapists, who might help with problems such as home adaptations, or advise on equipment to make everyday tasks easier
• Counsellors, who may support your whole family, as well as the person with the terminal diagnosis
• Pharmacists, possibly including a specialist palliative care pharmacist, who can advise on medication as well as dispensing any prescribed medication
• Support groups or charities, who may provide emotional or practical support

If your loved one follows a religion, a local religious leader or group may also be an important part of their support system.

Comfort symptoms

Symptom management is a major part of end-of-life care. This includes managing issues such as:

• Pain
• Breathlessness
• Nausea and vomiting
• Constipation or diarrhoea
• Loss of appetite

Depending on your loved one’s illness, it may not be possible to completely cure all of these symptoms. However, the palliative care team will work together to make your loved one comfortable. This will probably involve medication, but may also involve other techniques such as physiotherapy, diet changes, massage or other treatments.

All treatments should be as minimally invasive as possible, so that your loved one is not too distressed.

Emotional comfort

Providing emotional comfort and support is a huge part of end-of-life care.

It’s normal to feel angry, worried, frustrated, helpless, depressed, and a range of other emotions when nearing the end of your life.

Family, friends and other existing support systems such as religious leaders or support groups may be able to provide all of the support necessary. Some people find it helpful to talk to a counsellor or therapist, or have regular discussions with their palliative care team. If your loved one has a carer who visits regularly or lives with them, they can also be a valuable support system.

Emotional comfort might not just come from talking. Other therapies such as art or music therapy might help your loved one. 

Supporting family members

As you know, looking after a loved one with a terminal or life-limiting condition can be difficult. Finding professional end-of-life care for your family member means that you can step back from some of the day-to-day care. With trained healthcare professionals providing the care for your loved one, you can focus on spending quality time with them during the final stages of their life.

Good end-of-life care ensures that you are supported throughout the final stages of your loved one’s life. Your loved one’s care team may be able to signpost you towards support services for you, if needed. This support may continue after your loved one has died – for example, you may wish to access bereavement counselling.

End-of-life planning

End-of-life care also involves practical support, helping your loved one think about their wishes for the future.

These decisions need to be made by someone who has what is called testamentary capacity. This means they need to understand what they are doing, what the documents are, and the effects of them. Towards the end of your loved one’s life, they may be taking medications that cause confusion or they may develop dementia or another condition that could affect capacity. If they do not have capacity, you may be able to apply to become their deputy and make decisions on their behalf.

Wills

If your loved one has not yet made a will, this should be a priority.

Writing a will is especially important if your loved one:

• Owns property
• Lives with someone who is not their legal spouse
• Has strong feelings about what should happen to their property, possessions or savings after their death

If your loved one dies without a will, their property, money and possessions may not go to the people they would have preferred.

A solicitor can help your loved one write their will. If costs are a concern, some charities partner with solicitors to offer free or low-cost will-writing services.

Lasting power of attorney

Lasting power of attorney is a legal document that allows your loved one to nominate someone (known as the attorney) to make decisions on their behalf. They must have capacity at the time they are appointing a lasting power of attorney.

Your loved one can choose to have an attorney for health and welfare matters, financial affairs (including property) or both. Your loved one can nominate multiple people as attorneys.

As an attorney for financial affairs, you can make decisions about selling a home, bank accounts, and so on. This can be done as soon as the lasting power of attorney is registered.

As an attorney for health and welfare, you can make decisions about medical treatment, moving to a care or nursing home, and personal care. This lasting power of attorney can only be used if your loved one loses capacity.

Advance statements 

An advance statement is a way for your loved one to let people know their wishes about their future care. This might include information whether they would prefer to stay at home or move into residential care, for example. Advance statements may also cover information about your loved one’s religious beliefs or dietary preferences, and other personal wishes.

It’s not legally binding, but it can help others make decisions about their care if they can’t communicate.

Advance decisions

An advance decision is a way to let your loved one’s medical team know what treatment they would like to refuse in the future. Sometimes it’s also known as a living will, advance decision to refuse treatment, or ADRT.

Advance decisions allow patients to refuse specific types of treatment, including life-saving measures such as ventilation or CPR. If your loved one is choosing to refuse life-saving treatment, their advance decision must be written, signed and witnessed. A signed and witnessed advance decision is legally binding.

What options are available for end-of-life care?

While many people die in hospital, it’s often possible to provide end-of-life care in other, more comfortable settings. It all depends on your loved one’s wishes and individual circumstances. 

One of the main choices is whether your loved one will stay at home, or move to a care home, nursing home or hospice. There are advantages to each option, and it may help you and your loved one to talk them through with one of the healthcare professionals involved in their case.

Some parts of end-of-life care, such as district nurses and most medical treatment, are offered for free on the NHS. Some people with an incurable illness may also qualify for NHS continuing healthcare .

You or your loved one may need to pay for some things, such as support from care workers, various therapies, or accommodation in a care or nursing home. If you are concerned about the costs of palliative care, there are several options for funding care.

Home care

Many people choose to stay in their own home at the end of their life. Home care workers can support people who want to remain at home, but who are finding it difficult to cope with their daily needs.

Home care workers may be able to help your loved one with:

• Support with washing, bathing or showering
• Continence and toileting support
• Help with moving around the home
• Support with dressing, shaving, hair care and other personal grooming activities
• Support with skin, foot and wound care
• Meal preparation and feeding support
• Medication reminders and administration
• Catheter and stoma care

Carers can also provide companionship during the day or night.

If your loved one already receives personal care, their existing carers may be able to support you with end-of-life care.

Advantages of home care:

• Your loved one won’t have to move, which can be traumatic, at an already stressful time.
• Your loved one can remain in their familiar home, surrounded by their own family, pets and belongings.
• Friends and relatives can visit at any time of day or night.
• Some care workers specialise in supporting people at the end of their lives. They will be able to guide and reassure you through the final stages of your loved one’s life.

Live-in care

Towards the end of their lives, a lot of people may need a carer on call at all times. This may be because they have more physical care needs, or because they need emotional support. A live-in carer can help your loved one with all of the usual personal care activities, with more time for companionship care.

If you plan to hire a live-in carer, you will need a spare bedroom for them. They will be entitled to regular breaks - if your loved one needs care continuously throughout the day and night, you may need to hire more than one carer, or look into a care or nursing home. 

Advantages of live-in care:

• As with other types of home care, your loved one can stay at home.
• Your loved one will have regular company throughout the day or night, even when they aren’t receiving personal care.
• A live-in carer will be on hand to help or call for assistance during an emergency.

End-of-life care in a care home

If your loved one doesn’t want to or can’t stay at home, they may choose to receive their end-of-life care in a care home. They will be able to receive personal care throughout the day and night.

Advantages of care homes:

• The environment will be accessible for your loved one. If they now need a wheelchair or a hospital bed, you can be reassured that the equipment they need will fit in their room.
• Social care staff can support your loved one for regular personal care, as well as in an emergency.
• Your loved one will have the additional company of other residents.

End-of-life care in a nursing home 

For people who need more support, a nursing home may be the right choice for end-of-life care. Nursing homes will always have a qualified nurse on site, and can provide skilled nursing care to residents when needed.

Advantages of nursing homes:

• Nursing staff will be there to look after your loved one whenever needed.
• You will not need to make adaptations to your loved one’s home – these can sometimes take a long time, whereas a nursing home will already be set up to be as accessible as possible.
• The home’s staff team will usually have experience in providing end-of-life care, and will be able to support you and your family.

End-of-life care in a hospice 

Your loved one may be able to receive care in a hospice, either as a day visitor, or as an in-patient. Most hospices offer medical care, personal care, therapy and support for the whole family.

Advantages of hospice care:

• Hospice care can be used in conjunction with other types of care, as your loved one can visit for the day if preferred.
• Many hospices will support your loved one through the whole end-of-life process, including offering support with wills and other legalities.
• Hospices usually provide counselling and therapy for the whole family, including spiritual care if appropriate.
• Hospice care is provided free of charge in the UK, funded by the NHS and charities.

End-of-life care

Looking for end-of-life care can be an emotionally fraught experience. As your loved one nears the end of their life, they are likely to need more specialised care than family and friends can provide.

However, effective end-of-life care can improve your loved one’s quality of life, and provide you with much needed support and peace of mind. It’s there to support your loved one to live as well as possible until the end of their life, and ensure that they are as comfortable as can be, both physically and emotionally.