What is end of life planning and care?
You should find that local health and social services provide end of life care with staff trained specifically in helping to navigate this final stage. Understanding what end of life planning and care means and what is available should help you cope through some of the emotional and practical challenges. You can jump to parts of this article by using the quick links here:
Key documents for end of life planning
For your parents or relatives to have as much control over any care they may need in the future, and should they lose the mental capacity to make their own decisions, there are a number of documents/decisions that should be investigated as part of end of life planning:
Advance Care Plan or advance statement – a written document (not legally binding) setting out someone’s wishes, beliefs, values and preferences about their future care. Not to be confused with
Advance Directive/Living Will – legal document of wishes or decisions to refuse particular treatments or medications called an ‘Advance Decision to Refuse Treatment – or ADRT for short. Not to be confused with
Do Not Rescuscitate Order – DNAR is a non-binding document containing wishes when not to be resuscitated
Everyone should have a Power of Attorney – personal welfare PoA for health/medical issues alongside a property and financial power of attorney to cover all money matters.
What is End of Life Care?
End of life care aims to support those people who are thought to be in the last year of life, but this timeframe can be difficult to predict. Some people might only receive end of life care in their last weeks or days. It is about individual needs rather than as a result of a specific diagnosis.
What does end of life care mean?
During the last months or years of a persons life end of life care should help them live as well as possible and die with dignity. In many cases it will involve making your parent or elderly relative comfortable, managing their pain and other symptoms.
There are many practical aspects you’ll want to consider. Crucially, you don’t have to tackle these alone. End of life care can involve a wide variety of health and social care professionals and it’s very much part of their remit to support you and other family members.
Every end of life plan is different
Planning for the end of your elderly parent’s life is a huge task for most people and a very individual experience. There will be help from NHS, carers, care agencies and many more support groups. The timescales will vary, and there is no right way of sorting through end of life planning.
Everyone does it differently, but we’ve put together some tips to help you.
Where to receive end of life care
You can access end of life care no matter where your parent is being cared for: at home, in a care home or in a hospice or hospital. If they are still at home or living in a care home, it will be their GP who has overall responsibility for co-ordinating their care.
The care team may also include community or specialist nurses, hospice staff, physiotherapists, occupational therapists, social care staff and chaplains.
The discussions you may have with both your parents and the care team could be about what they and you want to happen. Or, maybe your having trouble determining what care is best particularly if they do not understand their diagnosis or are not really aware that they are coming to the end of their life.
Questions about end of life care
Has the doctor discussed any of their options with them? It may help to talk to family and friends and let the medical team know the wishes and preferences on how your parent reaches the end of their life.
First you may need to ask the professionals some questions of your own so you fully understand. It can be difficult to ask and what you need to know in order to help but you may wish to ask about the following:
- The type of support and care available.
- Who will be responsible for your relatives end of life planning and care.
- Who you can ask for help and support for yourself, family members and your elderly parent.
Talking about death
If you haven’t already, and if you can, try to determine your parents knowledge about and understanding of their illness. They have a right to know of course, but if you, a carer and other family members wish to keep it from them it is your choice – but they will be told by their doctors.
- Choose an appropriate time and place where you know you won’t be disturbed or rushed to make decisions in discussing end of life planning and care.
- Give your family notice, so they know that you are about to have this type of conversation with your elderly parent and have everyone there who needs to be there, whether its another family carer, professional carer or someone there just to support you.
- Have your doctors, nurses or carers attend to help you discuss the options just in case anyone gets confused.
- You don’t need to cover everything on the list all in one occasion. Have separate conversations at different times. It may be too much for you or your elderly parent to go through.
- Keep notes beforehand about what you wish to discuss and throughout, to ensure everything discussed between you and your parent is clear.
What is an Advance Care Plan?
An Advance Care Plan or advance statement is a written statement that sets out someone’s wishes, beliefs, values and preferences about their future care. It provides a guide to help healthcare professionals and others including family members who might have to make decisions in the future.
It is a formal document, and a very reasurring way for an elderly parent or relative to explain how they would prefer to be cared for if they become unable to make decisions or communicate their wishes.
What does an Advance Care Plan cover?
- How things should be done on a practical daily basis; for example preference for a bath or a shower
- Any religious or spiritual beliefs that might have an impact on how someone is cared for
- Who should be involved in any care or decisions about care
- Where someone would like to be cared for – at home, in a particular care home
- Practical concerns such as who will take care of the cat or other pets
What an Advance Care Plan doesn’t include
Any wishes or decisions about refusing particular treatments or medications must be recorded separately in an Advance Decision or Advance Directive (also called a Living Will). Legally this is called an ‘Advance Decision to Refuse Treatment – or ADRT for short).
How to create an Advance Care Plan
It might be helpful to talk about what goes into the Plan with the healthcare team who can explain the implications of likely treatment and care options. They may also be able to help in terms of explaining how realistic individual preferences might be and suggest alternatives for consideration.
When putting together an Advance Care Plan, information on Compassion in Dying’s website may be useful, such as their free online MyDecisions tool, which takes you through some questions and scenarios to get you thinking about what is most important; at the end, it generates a document laying out wishes for treatment and care to print, sign, witness and share.
Once completed, the plan will be added to the medical notes, so that anyone involved is aware of your wishes. The Plan can also be changed at any time by your relatives, particularly as circumstances might change.
An Advance Care Plan is not legally binding, but anyone making decisions about care for someone with such a plan should take them into account. For example, it may be your parents wish to be treated at home, but this may just not be possible in some circumstances.
What is Palliative Care?
Palliative care is treatment, care and support for people with a life limiting or terminal illness where there no longer is a possible cure for them. The aim of palliative care is a good quality of life which includes being as well and active as possible. End of life care is an important part of palliative care.
Examples of life-limiting illnesses include advanced cancer, motor neurone disease and Dementia. Palliative care can be received at any stage in the illness. Having palliative care does not necessarily mean that death is imminent – some people receive palliative are for years. It can also be given alongside treatments, therapies and medicines aimed at controlling an illness.
Palliative care is provided to:
- Improve your elderly relatives quality of life giving them relief from pain and other distressing symptoms
- Support’s every day life trying to keep them as healthy as possible regardless of their condition
- It can combine psychological and spiritual aspects to the end of life planning and care
- Offers a support system to your elderly parent to help them live as actively as possible until death
- Offers a support system to yourself as well as other family members to help them cope during their treatment and in bereavement
- Palliative care uses a team with everyone involved to help address the needs of your elderly parent nd yourself and other family members
- Applies to the earlier stages of your elderly relatives illness, alongside other therapies that are aimed to prolong their lifespan
- Palliative care can take place anywhere, anytime – in hospital, hospices, or in at home
From general care to specialist care there are a variety of people who provide palliative care. From those who give day to day care to family, friends, your parents GP, community nurses, social care workers, care workers, even spiritual care professionals and Marie Curie nurses.
We also have a section on the complex issue of Assisted dying.
It is a part of the role of all the professionals who may get involved towards the end of your elderly relative’s life to work with you on putting together an end of life planning and care procedure and agreeing on an Advance Care Plan. Discussions about the plan could include:-
- A DNR note- “Do Not Resuscitate” which is a legal order telling a medical team not to perform CPR (cardio-pulmonary resuscitation) on your elderly parent.
- Advance Directive and Power of Attorney.
Whilst an Advance Care Plan is not legally binding, there are steps that can be taken to ensure your relative’s wishes are followed if they lose capacity to make decisions at the end of life. The recommendations are to make an Advanced Directive and secondly to establish a Health and Welfare Lasting Power of Attorney.
Other useful resources
For more information about End of Life choices, here are a few links:
www.findmehelp.org.uk – national directory of local hospices and other end of life care options.
NHS Choices guide to end of life care and options:
End of life: a guide – excellent guide to what to consider, ask about, and do from Marie Curie
Many charities dealing with life limiting illnesses offer fantastic advice and resources on end of life care.
If you would like to share your experience of planning end of life care or hear what others have done, join the conversation in the Age Space Forum.