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.
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:
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.
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.
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:
If your loved one follows a religion, a local religious leader or group may also be an important part of their support system.
Symptom management is a major part of end-of-life care. This includes managing issues such as:
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.
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.
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 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.
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:
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 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.
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.
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.
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.
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:
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:
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:
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:
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:
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:
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.
Beginning palliative care does not mean that the end of someone’s life is coming quickly. Palliative care includes five stages: the initial assessment and planning for future care, preparing emotionally, early-stage care, end-of-life care and, finally, bereavement support for family and other people close to the deceased.
End-of-life care usually takes place in the last year of someone’s life. If you or a loved one has been diagnosed with a terminal illness, you will probably be working with lots of health professionals, who will tell you when they believe it is time to arrange end-of-life care.
Patients who need end-of-life care may have several choices about their support, including where it takes place. Some may choose to stay at home and receive care there, either as regular care visits from a trusted care worker or from a live-in carer. Others may choose to move to a care or nursing home, or go into a hospice. Some people may need to be in hospital towards the end of their life.
Good end-of-life care can massively improve the quality of life for the person who is dying, and their loved ones. End-of-life care includes effective pain and symptom management, as well as personal care. All of these will ensure that the person is as physically comfortable as possible. Emotional support should also be provided as part of good end-of-life care.
Get in touch with Tiggo Care today to see how we can help you or your loved one.