End Of Life

Northamptonshire Carers is aiming to offer help and support to those who are caring for someone who has been given the diagnosis of a life limiting condition.

End of Life can be a confusing term and is defined differently by various areas of health and social care.  It is sometimes referred to as a terminal illness, an incurable disease or as a condition needing palliative care. This could apply to cancer patients, those living with heart failure, degenerative neurological conditions such as MS and MND, dementia etc.   Any condition is “end of life” if the patient has been told that whilst there is treatment for the symptoms of their condition they are in the last months or years of their life.  Ideally, End of Life care should offer:  managing any symptoms, offering emotional, spiritual and psychological support, offering practical support, including things such as planning for the future or supplying equipment; a and giving you a good quality of life. 

Caring for someone at End of Life can be difficult in many ways.  There are all sorts of emotions involved: shock, depression and anger for the carer and the person they are looking after.   Watching the person you care for struggle with day to day tasks, being in constant pain, undergoing distressing treatment and managing their own moods is all demanding.  You and the wider family could find yourselves feeling confused, distressed and exhausted.

Northamptonshire Carers will provide someone you can talk to about how you are feeling and how you are coping with all the pressure and stress that surrounds this particularly difficult time, whether you and your family have just had a diagnosis of a life limiting illness or are approaching the end of that journey.  There are many conditions which are defined as life limiting, such as COPD, Heart Failure, cancer, sickle cell disease, neurological conditions, all of which can have very different symptoms and impact on life expectancy. Our befrienders will be people who have been through and/or have a real understanding of what you are experiencing.  You could meet and talk or keep in touch by phone, text or email if you prefer, we will always be led by you. 

You could also attend a support group either one of our many general carers groups or those specifically designed for those in the same situation as you.  Groups for those approaching the end of life and their carers are currently running at Cynthia Spencer Hospice (Northamptonshire Carers Team Site - Documents\Team Drive\Poster Collection\Caring Together), and we are developing links with Lakelands in Corby and Cransley Hospice.  We will be looking to extend this support as demand grows.

If you are not getting the support you need Northamptonshire Carers End of Life team can support you to access this care, whether it is the right equipment, day to day care for your loved one or other issues you are finding difficult.  We can also offer help with advanced care planning, applying for Power of Attorney and DNR’s / Respect.

NC also offers a Bereavement Support Service which you can move onto seamlessly for support following the death.  Former Carers | Northamptonshire Carers Association (northamptonshire-carers.org)

Planning

There are many steps/stages of End of Life, often NHS will define this as last 6 weeks of life.  Northamptonshire Carers will provide our End Of Life services from the time of the diagnosis.  So once you or your loved one is told that there is no cure for the condition in our definition this is end of life.  This will allow for considering the emotional, financial and other impacts of that diagnosis at an early stage if you wish to.   One of the important things to consider at this point would be End of Life Planning.  This could include:

- what do you want to see?

- is there somewhere you would like to go?

- a part of the world you would like to see?

What is important to you with regard to your loved ones culture, spiritual and religious beliefs

- checking entitlement to benefits e.g. some end of life conditions lead to a DS1500 which entitles you to Attendance Allowance or PIP

-what are your rights at work as a carer? Does your family member wish to carry on working whilst receiving palliative care?  How do you tell your employer? Terminal illness is considered a disability by law so as the person concerned cannot be discriminated against due to that illness. The law also states that reasonable adjustments should be made to enable them to carry on working.  A really good guide if you feel the employer is not being reasonable is available at: 

https://www.gov.uk/government/publications/dwp-factual-medical-reports-guidance-for-healthcare-professionals/dwp-financial-support

https://www.acas.org.uk/reasonable-adjustments

Where does the person dying want to die?

• Do they want to die at home or in a hospice?
• Is it possible to remain at home – what support is available?, who is available? What about medication, equipment etc. is it available/do you have access?
• Have you been in touch with the local hospice, support is available from them at every stage

https://cynthiaspencer.org.uk

https://cransleyhospice.org.uk

https://www.lakelandshospice.org.uk...Kirsty/Sandra

Cynthia Spencer and Cransley also provide Hospice at Home services.

“The Hospice at Home Team's main aim is to help patients who choose to remain at home during their illness to be cared for at home. They maintain the same ethos of care as delivered by Cransley Hospice: to maintain dignity, assist in controlling symptoms and enable patients to make decisions about their care. LINK

The Hospice at Home Team work in partnership with General Practitioners, District Nurses and other health and social services, although the patient's own GP and District Nurse remain responsible for the overall care at all times.”   Taken from Cransley Hospice at Home information.

The aim is to provide a wrap-around package of care which supports the patient and the family.

So what does good End of Life Care look like for a lot of people it is:

• being treated with compassion and respect
• being kept clean, comfortable and free from distressing symptoms
• being in a familiar place surrounded by those close to them.

And it should provide consideration of:

• their physical needs, including pain relief and management of other symptoms
• their emotional needs, including managing distress
• their relationships with others, including who they would and wouldn’t like to be with them
• their environmental needs, such as their surroundings and community
• their cultural, spiritual or religious beliefs and practices.

All of the above are part of and can be supported by what is described as Advanced Care planning, which put simply means the person at End of Life saying what they want to happen.  A really good guide is :

https://www.nhft.nhs.uk/download.cfm?doc=docm93jijm4n13922.pdf&ver=47329

This can be a really difficult thing to do, there are many barriers to taking this forward.  How do you start this conversation?  As a carer it could be really hard to broach the subject with your loved one, who may not even have come to terms with the diagnosis, it may need to be brought up sensitively and cautiously.  As the person approaching end of life your family/friends/carers may evade the subject every time you mention it, many people can find it hard to discuss serious illness and death.  The person at end of life may also not have good relationships with family and not want them involved or may be determined that they do not want to be a “burden” to family and friends. Those who work in healthcare, i.e. doctors and nurses can also feel uncomfortable having conversations about planning for end of life and death.  Again this could be worsened if there is not an established relationship with the patient and family.

Another barrier could be that the person involved doesn’t really know what they want.  If this is the case then information is essential, what is available? How do we access it? At what stage should I think about DNRs etc.

Lasting Power of Attorney

This can be another sensitive area as it involves considering a time when the patient is unable to make their own decisions but it is a vital part of forward planning.

There are two types of LPA  health and welfare and financial and property, you can choose to have either or both.  You must be over 18 and have mental capacity (i.e. be able to make your own decisions)  when you appoint someone. 

Health and Welfare LPA will affect decisions around:

• Your medical care
• Moving into a care or nursing home
• Life sustaining treatment
• Your daily care and routine

Financial and Property LPG will affect:

• managing a bank or building society account
• paying bills
• collecting benefits or a pension
• selling your home

Both of the above can be put in place and registered but will only be enacted when the person is unable to make your own decisions.

Dementia and End of Life

Many of the issues remain the same but planning end of life with a person with dementia can be complex.  Care planning and power of attorney are very necessary and might need to be considered at a relatively early stage when they still have mental capacity.  This can be difficult to deal with as the person may still be coming to terms with their diagnosis and may be determined to live a good and fulfilling life for as long as possible.  Considering end of life may conflict with a positive decision to live well with dementia.  Dementia is however a life limiting illness and plans should be put in place around care as the condition progresses and end of life as soon as possible.

When someone is approaching end of life with dementia it is important to:

• Provide a calm and familiar environment is usually best for a person with dementia at the end of their life. Stimulating the senses, for example with music and aromas the person likes, can also help. The focus should be on making sure the person is as comfortable as possible.
• Take your time and take cues from the person.
• Use what you know about the person to engage them. This could include hobbies and interests from their past. It can help to make use of a range of resources such as photos, objects and memorabilia.  (Marie Curie – Dementia towards the end of life)

Someone with dementia may be in pain and not able to communicate that, knowing the person and how they behave will help e.g. do they have a particular facial expression when in pain?  You may need to keep an eye on if they are eating and drinking, they may have lost their appetite or have difficulty swallowing.  They should be encouraged to eat and drink, offered food for as long as possible.

Guides available:

https://www.nhs.uk/conditions/dementia/palliative-care

https://www.alzheimers.org.uk/get-support/help-dementia-care/end-of-life-care-dementia