What are Palliative Care and End of Life Care?
The Marie Curie organisation describes both palliative care and end of life care as:
Palliative care is for people living with a terminal or complex illness where a cure is no longer possible or they need their symptoms controlled. It aims to treat or manage pain and other physical symptoms. It will also help with any psychological, social or spiritual needs.
Palliative care includes caring for people who are nearing the end of life. This is called end of life care. End of life care is for people who are considered to be in the last year of life, but this time-frame can be difficult to predict.
At Christies Care we believe that the end of somebody’s life is a very important time and it is important that the right care is given and that the care is given in a manner that suits the person who is dying.
Christies Care’s approach to Palliative and End of Life Care
Christies Care specialises in providing live-in care by supplying fully-trained carers to clients throughout the UK. Family owned and run, Care Quality Commission (CQC) registered and members of The Live-in Care Hub, and we have over 25 years of experience in this specialised field.
We train all our carers thoroughly and consistently. Our industry-leading, 11 day, residential induction course features a day exclusively devoted to Palliative and End of life care. This course is run by our in-house training team and has been developed with input from UK Home Care Association and St. Elizabeth Hospice. It prepares all those who attend to support and assist the client with their daily needs towards, and at, the end of their life.
This course covers
- Aspects of change as someone approaches the end of life
- Spiritual & religious needs
- Communication & documentation
- Collaboration with other professions
- Looking after yourself
- Managing death & bereavement
“Mr H. passed away during the night with all his family around him. It has been a pleasure to be with them and it was an honour.”
Who does Palliative Care and End of life care effect?
Logically most of us will require this sort of care and in most cases where the client is aware of their surroundings and in good communication; they are the most affected. In all cases the impact goes well beyond the person being cared for. Good care means that the whole support team – carer, close family, wider family and friends need to be positive, in good shape and clear about their responsibilities. Usually, but not always, the wider the circle of those affected becomes, the lower the affect can be.
“I just wanted to write and thank you for the fantastic service we have received from Christies. Mum died last week and I wanted you to know that I was deeply touched by the understanding and sympathy shown by both Kathryn Marshall, Mum’s co-ordinator, and particularly her carer, Maria, who came back specially from Poland to be with her in her last weeks.”
So what does Palliative and End of life care set out to achieve?
Clearly this sort of care has the sole objective of making the client enjoy life as much as possible and then die with as little discomfort and dignity as they can. Care extends to the wider circle of family and friends as well as the carers themselves.
How is this achieved – the client’s wishes
Critical to meeting this objective is identifying exactly what it is that will allow the client to enjoy life as much as they can. This communication can take place over a period of time and with whom the client is most happy to have it with. It will help to construct a Care Plan. The client can express their preferences as to where they have care and who provides it.
Location – most prefer to die at home
The choices are usually at home, in a care home, hospice or hospital – the latter two options being determined by your medical needs. Dying Matters research highlights a major mismatch between people’s preferences for where they would like to die and their actual place of death. Its research shows that around 70% of people would prefer to die at home, yet around 50% currently die in hospital.
“I would like to thank Christies for the care given to my father in the last few weeks of his life. The fact that he was able to spend his final weeks in his own home meant a lot to my father and he was full of praise for both Kerry and Steve, the two carers he had, and for Len their local advisor. My sister and I were also very happy with the care given by Kerry and Steve and thankful for the peace of mind that my father was in competent hands.”
Care providers and family
The first place most people turn to for care is their own family, and in many cases this can be a great solution – dying in familiar surroundings among people you love. If more care is required then professional, trained help will be necessary. Depending on the financial situation, and that of the family, the client may have little choice in the provision of their care but should they or their family be able to afford it, as stated above, most people prefer to die at home. It makes sense therefore to consider live-in care from Christies Care where live-in home care options are explored and explained. Of course, should the client prefer a care home then the Care Quality Commission has information on these.
Whether being cared for at home or in a care home, the client’s GP keeps responsibility for their care and there will be many others like District and Community Nurses, social care staff, physiotherapists, occupational or complementary therapists.
Mrs E. (friend of a late client) made a beeline for Lin Barnes (Christies Care’s Registered Manager) at an awards event to congratulate her on the wonderful care provided and the speed in which Christies Care had attended to Mr W.
As we have said, palliative care often involves an incurable condition where, to make you as comfortable as possible, the pain requires management to relieve uncomfortable symptoms by therapy or, more usually, drugs. Palliative care isn’t just for the end of life. Clients may need palliative care earlier when they are ill and while still on medication and/or receiving therapy.
A well-trained, live-in carer can undertake administration of medicines as well as co-ordinating therapist’s visits which takes pressure off family and other local professionals. Carers often become a friend to the client and this trust is one of the most fulfilling aspects of care from the carer’s perspective.
“Pa passed away this morning. Lewis has been an angel! He’s been wonderful & the best carer that we could have asked for at a time like this.”
Time and expense
End of life care can last for days, months or even years.
The NHS says people are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:
- have an advanced incurable illness such as cancer, dementia or motor neurone disease
- are generally frail and have co-existing conditions that mean they are expected to die within 12 months
- have existing conditions if they are at risk of dying from a sudden crisis in their condition
- have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke
The amount of time a client requires care for has an impact on expense. Clearly if they are in a care home the ability to turn care on and off is very little whereas families can opt to do without a live-in carer for one or two weeks if they wish to take over care at any stage. Similarly, if a client has to spend some time in hospital then live-in care can be suspended. Both these events save money! Ultimately, as with everything, this should be determined by the client’s preferences – it has been known for a client to prefer the live-in carer’s company!
“It was very peaceful at the end. Stephanie has been a massive help. It was very clear she had experienced it before and she was excellent.”
Who is suited to providing good Live-in care?
Emotional & physical requirements
As you would expect the key emotional requirement is compassion. A good carer needs to understand and anticipate a client’s requirements. With Palliative and End of Life care this is vital as often the client may become unable to express themselves clearly so a good sense of what’s required is very helpful. Good carers also need to have a level head, common sense, responsibility, a selfless attitude and a sense of humour helps.
With the frequent requirement to help with mobility as well as being on call at peculiar hours carers also benefit from being in good physical health.
In this area of care, where emotions are guaranteed to run high, the carer needs to be made of sound psychological stuff. Able to rise above human manifestations of grief and sorrow when the situation dictates but sensitive and supportive when required. Christies Care training recognises that it is equally important that carers themselves stay strong. It is vital that carers can look after themselves and can manage the emotional effects of death. A large part of its training, therefore, covers ways for carers themselves to cope with this deeply difficult time and remain able to give their best care and attention to their client.
This psychological, social and spiritual support for the client and their family and the carers themselves is called a holistic approach, dealing with the client as a “whole” person.
Palliative and End of Life care is not for the squeamish. You have to really want to work in this area and so Christies gets to know its carers during their periodic residences for training. This allows an assessment of each carer’s aptitude to remain committed to the skill. Carers are offered relief if a client is particularly difficult but it is notable that not many take it.
Age and gender
You can care for someone regardless of your age or gender. The qualities above are far more important. As long as you have them and are well-trained you can do it. Many families do.
“I appreciated the opportunity of being able to help someone die with dignity. I think it’s important to make it as good an experience as possible.”
Why is Palliative and End of Life Care fulfilling?
We are all human beings with the same certainty of the finite nature of our lives. Care in itself is a rewarding endeavour bringing with it the satisfaction of making someone else’s life more comfortable. At Christies Care we have trained thousands of carers and witnessed the wide spectrum of natural abilities for this vocation that are present in all of us.
The area of Palliative and End of Life care is especially fulfilling when compared to the day to day satisfaction of regular care because it is an occasion of heightened sensitivity and emotion. All those involved in it are aware of what is ultimately going to happen but few, if any, will have been trained for the occasion and have previous experience.
We have seen repeatedly that with the right training our carers have the confidence to provide great care and allow their natural qualities of empathy and compassion to bring fulfilment to clients, their families and themselves. Few jobs can be quite so fulfilling.
“Aileen (carer) was amazing and stayed up all of the last night holding my Mum’s hand. She is truly an asset.”