Understanding your choices
In recent years there’s been growing recognition of the need for a special approach to caring for people at the end of their lives. An increasing number of health and social services are offering training to staff in helping people navigate the final months or years. Understanding what end of life planning and care means and what’s available should also help you cope through the emotional and practical challenges.
What is end of life care?
End of life care aims to support those with life limiting illnesses such as advanced cancer or dementia. During the last months, or years of life it should help them live as well as possible and, eventually, die with dignity. In many cases end of life care will involve making your parent or relative as comfortable as possible, managing pain and other distressing symptoms. But there are also 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 too.
The who and where of 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 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. But the care team may also include community or specialist nurses, hospice staff, physiotherapists, occupational therapists, social care staff and chaplains. Support at the end of life is also available from a growing number of specially trained counsellors and complementary therapists who can provide great comfort to your loved one and to you.
What is palliative care?
You may have heard the term palliative care, which simply refers to the whole of end of life care: taking a holistic approach to looking after someone’s emotional, social and spiritual needs as well as the medical and practical ones.
Advance Care Plan.
It is a part of the role of all the professionals who may get involved towards the end of your relative’s life to work with you and your relative on agreeing an Advance Care Plan. Among the things this could include are:
– A DNR – “Do Not Resuscitate” which is a legal order telling a medical team not to perform CPR (cardio-pulmonary resuscitation) on a patient.
– Advance Directive and Power of Attorney. There are a number of steps that can be taken to ensure that your relative’s wishes are followed if they lose capacity to make decisions at the end of life. Two specific recommendations are to make an Advanced Directive and secondly to establish a Health and Welfare Lasting Power of Attorney.
We also have a section on the complex issue of Assisted dying.
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.