End-of-life care is often considered a taboo subject. Most people not only are afraid to talk about it, but to even think about it, often avoiding the discussion until they actually have to come to terms with a loved one’s death.
Yet, while it may be a difficult conversation to have, it’s really important that you know your relative’s preferences well before the time comes. After all, you’ll want to make sure that the care they’re given reflects their wishes – and prioritises the things that are important to them.
If you’re not sure what your options are for end-of-life care, don’t worry. Here, we’ll talk you through the ins and outs of this tough topic, so that you and your loved one can make an informed decision about what’s right for them.
What’s the difference between palliative and end-of-life care?
We talk about ‘end-of-life care’ when referring to care for someone who is in the last months or years of their life. This type of care is designed to help them to live well until they die, with a focus on dying with dignity.
‘Palliative care’ is specialised care for people with a serious illness, even if it’s not currently life threatening. Palliative care is focused on pain relief and on helping people to live as well as possible with their condition. To sum up, palliative care doesn’t necessarily take place at the end of someone’s life.
Why should we plan our end-of-life care?
As hard as discussing and thinking about a loved one’s death may be, talking about this subject well in advance means you’ll know what to do when the time comes. This can save you a lot of stress and fear during what is already a very difficult time. It can also be very reassuring for your loved one to know that everyone in the family is prepared, and that their wishes will be followed.
What end-of-life care options are available?
Before you broach the subject of end-of-life care with your family, it can help to get a clear picture of all the options available. They are:
- End-of-life care in a hospital: If your loved one’s condition has led them to a hospital stay, they will be able to receive end-of-life care from specialists in the form of pain relief and other palliative medication. Some wards even specialise in palliative care, with staff who can help you create end-of-life care plans that follow your loved one’s wishes.
- End-of-life care in a care home: Nursing care isn’t always available in care homes, so they’re not always ideal for those with advanced medical needs. But if your relative lives in a care home and wishes to stay there until the end of their life, and they only need social support, then a home with staff trained in end-of-life support can be a good option.
- End-of-life care in a hospice: Most hospices provide a range of services from specialised staff, including occupational therapists, reflexology practitioners, religious practitioners and bereavement counsellors, as well as nurses and doctors. People can either attend the hospice activities during the day or choose to live there for the last few weeks of their lives.
- End-of-life care at home: Research shows that most people want to die at home, surrounded by the things and memories they care about, and with their family supporting them. If this is your loved one’s wish, their GP can help you plan their end-of-life care. A specialist nurse may also step in if medical or palliative care is called for. If emotional and physical support is what’s needed, a professional home carer can help you as well.
Of course, the final decision will come down to a few different things, including the level of medical care your loved one will need. But if you listen to their wishes – and their reasoning – carefully now, you’ll be able to accommodate them as much as possible when the time comes.
What questions should I ask?
When you’re talking about end-of-life care with your loved one, there are a few different things to consider. After all, it’s not only about where they want to die, but also how they want to be treated. Here are some examples of questions you might want to find answers for:
- Where do they want to be at the end of their life? And who they want to be with?
- What are their health conditions? Do they need nursing care to manage their symptoms? If so, they’ll have to consider whether to get a nurse to visit them at home, or to spend the end of their life somewhere they can get nursing support.
- What’s available in your local area? If your loved one wants (or needs) to die away from their home, look into local services that can meet their needs and wishes. And if they’d prefer to spend their final months at home, try to find out what home care services are available in the area.
- What are the therapies available? And what are your loved one’s wishes around medication and treatment?
Having a clear and open discussion about these points can help you make sure you and your family are prepared for whatever might come. But there is always a chance that your loved one might change their mind. If this happens, don’t be scared. It’s fine, and not at all unusual. Just do your best to accommodate their wishes as they adapt to their changing situation.
Further information and advice
The NHS website is a good source of information when it comes to finding out more about end-of-life care. The charity Dying Matters also offers support for those who need to have difficult conversations about end-of-life care with a loved one.
And if you decide to arrange end-of-life or palliative care at home, SuperCarers can help you find professional home carers in your area who can meet your loved one’s specific needs and wishes. You can also speak to one of their care advisors by calling 020 3918 7753.