If you’re at the end of your life, you may not want any medical intervention. It’s your choice.
With health professionals sometimes wanting to preserve life as long as possible, the term ‘end-of-life’ care can sometimes seem a contradiction.
And if it’s your parent or relative who is dying, you may find you become the buffer between what the care team want and what you know your relative would want.
Empathising with the dying person, understanding what they really want and need and showing compassion for their choices can go such a long way in helping someone in the very last stages of their life.
There are however various practical things to consider. The following information may help prepare you for some of the issues that can arise.
The end-of-life ‘industry’
When you’re dying you often receive more attention than you ever did before. This seems to be particularly the case with cancer, even though other diseases are just as distressing.
Death can become a ‘medical process’. The paraphernalia, drugs and other interventions (albeit mostly well-intentioned) that a terminal illness seems to attract can sometimes impose on – and destroy – the natural process of dying.
You may decide you don’t want a lot of medical intervention. It’s your choice and you can say so. If you’re still able to make decisions for yourself, and you wish to put that choice in writing for the time ahead, you may be able to draw up a Living Will or a Health & Welfare Power of Attorney.
Communication and choice
If it’s your parent or relative in a care home at the end of their life, it’s really important that you and the care home are in close communication – on a daily basis, if necessary – about what care is being provided.
If your relative is unable to make decisions, you can express your wishes for that person to their GP and to the care home’s nursing team or the palliative care team. For example, you may not want feeding tubes inserted or any invasive treatment, and you may not want your parent/relative to go into hospital.
If you have a Lasting Power of Attorney covering the health and welfare of the person who is dying, you may have more influence in this respect. A compassionate GP and care team may well take your wishes into account anyway, without you having a Power of Attorney, but there’s no guarantee.
A care provider may be keen to keep feeding your relative, even if your relative doesn’t want to eat. The care provider may also be keen for you to agree to your relative having a feeding tube. Care providers can be vulnerable in this respect, because a family could easily sue them afterwards, claiming they didn’t do enough. That’s why it’s a good idea to put your wishes in writing, so that the care team feels it has some protection and so that it’s clear what you do and don’t want.
There are some good end-of-life care services available. However, some care home residents find they don’t have access to all services. This may include the valuable help offered by MacMillan Cancer Support or Marie Curie. This could be because of a decision made by the care home, or because the various care organisations consider that care home residents are already receiving appropriate care.
Hospices offer a range of therapeutic services but, if you want to access them, a hospice will often require you to travel there yourself. However, that may not be possible for you at this stage of your life – and, also, transport facilities at many care home could be be limited.
You may find you’re not able to stay at the hospice for any length of time either – again, because you’re in a care home. People who are still having to pay full care fees at this point can find this rather unfair.
However, the care home or your GP may indeed ask a hospice nurse to come in and visit you in a care home – to advise on things such as pain relief. These drugs can still be invasive, though, and may affect your clarity of thought and your interaction with those you love towards the end of your life. You have every right to refuse medication.
It’s not unusual for GPs, nursing staff and hospice staff to say that a person at the end of their life can eat whatever they like – even if it’s completely devoid of nutrients. The rationale is that it doesn’t matter any more. And it is, of course, a choice for the person concerned.
However, if someone has limited time left and wants to feel as well and as lucid as possible during that time, it’s vital that they receive energising nutrients and good hydration. In fact, having a high-nutrient diet can extend the time you have left.
Sadly, it’s common for care home food to be low in therapeutic nutrients. This is the ‘norm’ – and yet nutritional supplements often have to have the ‘approval’ of a GP. GPs, however, generally have very little, if any, training in nutrition.
If you’re visiting an elderly relative in a care home and you’re bringing in additional high-nutrient foods/supplements, you may find an understanding member of the care team who is willing to help your relative with these.
As the relative of someone in care, you may be asked to complete a ‘Do Not Resuscitate’ form (DNR). This is where you indicate whether your relative should be resuscitated if/when they become unconscious.
You can express your wishes in the way you know is right for the person you love. It can be very hard emotionally, but it’s important to make everything clear in advance.
NHS Continuing Care
If you’re in a care home and receiving NHS Continuing Healthcare, there’s a chance the NHS could take away your funding as you reach the last stage of your life. In such a case, the NHS will say that you no longer need nursing care and that, to be blunt, you simply need personal care until you die.
This can be devastating news to receive – on so many levels.
Your family may want to challenge that decision immediately. Be aware, though, of the added emotional strain this may put on everyone. As a family member, maintaining a balance between fighting for what you believe to be right and spending time with the person who is dying, while you still can, is important.
If you’re at the end of your life and you can still make decisions for yourself, make sure your Will is up to date. If it’s not, arrange for a solicitor to visit you as soon as possible to get it updated.
If it’s your relative who is at the end of their life and they can no longer make decisions for themselves, then unfortunately it will no longer be possible for them to make or update a Will. However, in certain circumstances it may be possible for a statutory Will to be drawn up. Read more about Wills.
Government end-of-life care strategy
According to the Dept of Health’s document, Supporting People With Long-Term Conditions, good end of life care:
“…should attend to the needs of the whole person and those who are important to them. People approaching the end of life should reasonably expect that their care will be pre-planned wherever possible; well co-ordinated; equitable; and ethical with regard to preferences and personal beliefs.
“Involving the person and their carer in planning and agreeing a care plan, which identifies the needs and preferences for care at the end of life, ensures that they remain in control. This is fundamental to retaining a person’s dignity at a time when they are likely to be feeling at their most vulnerable.
“End of life care is also an area where there is input from a range of care providers, from Healthcare, Social Care and the voluntary sector, and it is equally important to ensure that these services are well co-ordinated.”
You can read more here about end of life care: NHS Choices – end of life care