Many people are afraid to think about end-of-life care, and even more afraid of talking about it with relatives and loved ones. But, while it may be a difficult conversation to embark on, it is vital that you know your relatives’ wishes before the time comes. You’ll want to ensure that the care they receive matches what they want and prioritises what is important to them.
Coming up with a thorough end-of-life care plan and making sure that everybody involved in a person’s care adheres to that plan will make a significant difference to the quality of the remainder of their life.
What is end of life care?
End-of-life care is support for people at the end of their life, for their final months or years. It is designed to be based on the preferences of the dying person. An end-of-life care plan should be put together with the people providing the care and loved ones, as well as the person who is elderly or unwell.
Everybody is entitled to high-quality care when they need it, and end-of-life care is no exception. To put together a plan for somebody’s end-of-life care, you need to consider factors like where they want to die, and how they want to be treated. Many people want to die at home, surrounded by loved ones and the things and memories they care about, while some want to die in hospice care or with the specialist medical teams at a hospital.
Above all, end-of-life care is designed specifically for the person who needs it. They should be at the core of all the decision making and should never be sidelined according to somebody else’s preferences.
A personalised care plan is a valuable document that will guide care providers on how to act, and will reassure the person receiving the care that their wishes are being followed. This care plan will be updated periodically, if priorities or circumstances change, and it will be informed by the specialist knowledge of doctors and nurses, as well as the desires of the person who is dying.
End-of-life care also looks at the needs and wishes of the people around the dying person, such as their relatives and close friends. The end-of-life care plan may include details on how to support those people through the process of illness or increased disability.
The difference between end of life and palliative care
End-of-life care is designed for a person who is in the last months or years of their life. It will help a person to live well, as far as possible, until they die, and it includes a focus on dying with dignity.
So, what is palliative care? Palliative care, on the other hand, is specialised medical care that is provided for people who are experiencing serious illness, such as cancer, even if that illness is not currently life threatening. Palliative means pain relief, so palliative care is focused on areas like easing symptoms rather than curing the underlying disease.
Palliative care can take place towards the end of somebody’s life, but it is not necessarily at this point when palliative care experts are brought in. It can also be when somebody is experiencing physical or mental stress as a result of their condition, or if they are in serious pain. Nobody wants to live with significant pain, and certainly nobody wants to die in pain, so palliative care practitioners are skilled at managing these symptoms, no matter what a person’s diagnosis is.
So, end-of-life care is care designed to support somebody in the final months and years of their life and, while palliative care may take place at this point, it is not necessarily just for the end of somebody’s life. It can come into play at an earlier point, to ease difficult symptoms even when somebody is not dying or does not have a terminal illness.
How to prepare for end of life care
It is really important that you do not find yourself in a situation where your friend or relative is entering the end of their life and you do not know what they want. You could end up making decisions based on best guesses rather than a person’s stated wishes, and you will always wonder if you made the right choices.
Clear and open communication will lead you to a place where you can help somebody to create an end-of-life care plan that is full of meaning for them. Make sure you learn about the different options available so that all the decisions you collectively make are informed rather than guesswork.
Some things you will want to understand are:
What is most important to your loved one. What are their priorities in the final months of their lives?
Your loved one’s health condition – what are the likely outcomes? What symptoms are they likely to experience towards the end of their life? How will it best be managed?
What options there are with regard to medication. Will this need to be changed as the client nears death, or is their medication sufficient to deal with increasing symptoms or distress?
Are any alternative therapies available? Is this something the patient would be interested in?
Where your loved one wants to be towards the end of their life. Do they want to be at home, in a care home, in a hospital or in a hospice?
What is available locally? Can local provision match what the person desires? For instance, is there a hospice available in the local area?
Does the person want to donate their organs? If so, is this possible or are they too unwell for their organs to be viable?
At the core of this planning is communication. Talk to your loved ones, and make sure you understand exactly what they need at this time. The more you know, the easier it will be to know that you have fulfilled a person’s wishes and not gone against a principle that is important to them.
It is also important to review the decisions you all make periodically. The patient is allowed – and should probably be expected – to change their mind! This is fine, and changes must be incorporated into the care plan as appropriate.
Another thing to prepare for is uncertainty. Things may not play out exactly as desired but, with a solid end-of-life care plan in place, the care will be better than if there is nothing in writing outlining the ideal outcome.
The different types of end of life care
End of life care at home
Many people want to spend the final months and years of their lives in familiar surroundings, with loved ones supporting them, and receiving help from care workers when they need it.
The family GP is responsible for the care of people whose end-of-life care plan specifies that they want to stay at home in their final days. Community nurses can help, as can at-home carers, and family members may also be involved in caring for their relative.
If palliative care at home is also required, a home carer or specialist nurse may be brought into the team to help the person who is dying to be as comfortable as possible, and to provide emotional and practical support.
End of life care in a hospice
Many people find a hospice a very caring place to spend their final days. These environments are designed to be as personalised as possible for the person who is receiving care, and they usually provide help such as occupational therapists, art therapists, complementary therapists such as massage or reflexology practitioners, counsellors and bereavement support, as well as the nurses and doctors you would expect.
Hospices have a focus on dignity and respect, geared towards meeting patients’ desires and wishes. All of this leads to an environment where individual patients’ needs are prioritised and they can receive significant support as they approach their final days. Some people go to groups or activities in local hospices during the day, while others stay there, residing in their own room for days or weeks at a time.
Hospices also often have religious practitioners, such as vicars and rabbis, who will work with the hospice clients to cope with what is to come.
End of life care in a care home
Some people choose to move into a care home, or to remain in the care home they already live in, when it comes to their end-of-life care. Staff are well-trained in looking after people’s wellbeing, such as help with washing, moving around, dressing and taking medication. They will also be surrounded by other people, which is great for those who might otherwise be lonely or isolated.
Nursing care is not always available in a care home (a nursing home may be required if nursing care is warranted), so this environment may not be suited towards those with advanced medical needs, such as requiring a feeding tube or ostomy bag. But, if social care is what is primarily needed, care homes where staff have specifically been trained in end-of-life care can be a good option.
End of life care in a hospital
End-of-life care can be provided in a hospital environment, where nurses and doctors will look after a person on a ward or in an individual side room. Some wards offer dedicated end-of-life and palliative care, and are experienced in creating end-of-life care plans and adhering to what is decided.
As with any end-of-life care plan, one drawn up in a hospital should involve the patient in decisions about how they want to live and die. A hospital may not be everybody’s preference but, when it is the place that somebody wants to be (or the place that they – for some reason – have to be), appropriate care plans can still be drawn up and monitored in this environment, where specialists are just around the corner and pain relief and other medication are available.
What is the end of life care pathway?
An end-of-life care pathway is a document that leads care practitioners through somebody’s care plan in the final weeks of their life. When there is an indication that they are dying, the care pathway will be embarked upon and it will follow the requests and desires of the patient and their loved ones.
What was the Liverpool Care Pathway?
The Liverpool Care Pathway (LCP) was intended as a way to care for dying patients that has now been abandoned because, although it led to dignified deaths when carried out by specialists, it was thought that there were other circumstances in which it actually led to suffering rather than the relief of suffering. Find out more about the new NICE end-of-life care guidelines here.
Further information and advice
You can find out more about end-of-life care from the NHS website. The Alzheimer’s Society has also produced a factsheet (PDF) about end-of-life care for people with dementia. Learn more about the care options available to you with our Elderly Care Guide.