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What is end of life care?

At the end of life, every story will be different.  Death can come suddenly, unexpectedly or someone gradually fades. For some people, the body weakens but their mind stays alert. Others can retain their physical strength but suffer cognitive losses which takes a huge toll. We all expect it to happen at some point but, each loss is personally felt by those close to the one who has died.

End of life care describes the support and medical care given during the time leading up to and surrounding the death. Many people can suffer from one or more chronic illnesses which require a lot of care for days weeks, and even months before death.

Decisions and when end of life care starts

There are many ways to provide care for a parent who is dying.  It can be daunting and overwhelming when asked to make healthcare decisions for them as they are no longer able to make their own decisions.  As a decision-maker, you may or may not have had an opportunity to have discussed your parent’s requests with them.  Without specific guidance, you need as much information as possible to make the best decision for them.

It is always a good idea to have someone with you when you are discussing options with a GP and medical staff.  Not only will a companion be there as support, but they can also take notes to help you remember details.  The NHS is a great resource to help with understanding what is involved and when the process should start.

Palliative care

endoflifeservices

If your parent is diagnosed with an illness that can’t be cured, palliative care is offered so that they can be made as comfortable as possible, by managing the pain and other distressing symptoms. It also offers support for you and the rest of your family.  It is referred to as a holistic approach as it deals with your parent as a “whole” person and does not just focus on the illness or symptoms.

Who provides palliative care?

Different health and social care professionals may be involved in end of life care, depending on your parent’s needs. For example, GPs, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, physiotherapists, occupational therapists or complementary therapists. These professionals will assess your parent’s care needs, and those of your family and friends. They should meet those needs where possible and know when to seek specialist advice.

What does palliative care provide?

Care

The aim of general palliative care is to provide as much information for you, your family and your friends.  Your Palliative Carer will give you accurate assessments of your parent’s needs, co-ordinate the teams of carers for the daytime and out of hours cover.  They will support you and direct you to other services that are available, provide basic levels of pain control and will have on-going regular communication with you and any other professionals involved in your parent’s care.

Preparing for end of life

Also called advance care planning.  Preparing for end of life involves thinking and talking about wishes for how and what care will be provided in the final months of your parent’s life.

Why plan ahead?

Planning ahead can help to ensure you know the wishes and feelings of your parent while they are still able to tell you.  Knowing their wishes could help if you ever have to make decisions about their care.  It is a good idea to record views, preferences and priorities about any future care.  There is no set way of planning ahead, but there are some useful steps you can take.

It may help to read the Planning for your Future Care booklet produced by the National Council for Palliative Care.

There is also information available from Macmillan Cancer Support and Marie Curie which provide information and support for what to expect and how to plan for end of life .

How to plan ahead

whoprovidesendoflifecareAdvance Care planning usually works through 5 steps which are to think, talk, record, discuss and share.

  1. Thinking about the future and deciding what is important to your parent and what they want to happen or not to happen if and when they become unwell.
  2. Talking with your family and friends and deciding who your parent wants to be their spokespersons or Lasting Power of Attorney if they get to a stage where they are no longer able to speak for themselves.
  3. Record. Recording your parent’s thoughts and decisions about ACP and your own thoughts and keep this record stored in a safe place.
  4. Discuss.  Discuss your parent’s plans with all healthcare professionals, this might include Do Not Resuscitate and respecting wishes.
  5. Share.  Share this information with others who need to know about your parent’s plans for end of life care, with healthcare records that may be reviewed regularly.

Useful link

Find Me Help.  A national directory of local hospices and other end of life care options.