End of life

End of life care

Some links on this page have been colour coded to make it easier to find the information you need:

Quick Read
In-depth
Clinical level

LOCAL SUPPORT - SELF REFERRAL

local palliative care team

There is excellent support from the local palliative care teams and though most people will be referred to the service by a GP or other clinician once you are under the service you can contact them directly. You may also be able to self-refer.

From Rennie Grove Hospice Care
Buckinghamshire Palliative Care Team includes nurses and palliative care doctors

Thames hospice

From Thames Hospice
“If you have been diagnosed with a life-limiting illness, you can also refer yourself to our services using our online referral forms.”  Get a referral | Thames Hospice

NATIONAL SUPPORT - SELF REFERRAL

NATIONAL HELPLINES

From Marie Curie
Care and support through terminal illness
How we can support you by telephone How we can support you 

From Macmillan Cancer Support
End of life: How we can help with chat online and telephone support. (Scroll down page to see helpline details) End of life – Macmillan Cancer Support

From Compassion in Dying
Contact Us: “Our nurse-led information line is free of cost and free of judgement. We’re here for you, whether you’re preparing for the years ahead or need us right now.” Contact us – Compassion in Dying in Dying

FREQUENTY ASKED QUESTIONS

GENERAL INFORMATION

From the NHS
Very helpful guide “End of life” covering many aspects worth considering

From Hospice UK (Dying Matters)

From Age UK

From Patient info

From Cancer Research UK

From Rennie Grove Hospice Care
Buckinghamshire Palliative Care Team

From Macmillan Cancer Support
End of life – Macmillan Cancer Support

From Marie Curie

From Independent age
Planning for the end of life | Independent Age

From NICE

From the Royal College of General Practitioners
End of life and palliative care toolkit
The clinical toolkit resource has been created for primary healthcare professionals, patients and carers.

From the NHS
This includes links at the bottom of the page to other websites covering care in the last days of life

From Buckinghamshire Healthcare NHS Trust

From NICE

YOUR END-OF-LIFE CARE WISHES

From Patient info
How to talk about your end of life care wishes | Patient

DO NOT ATTEMPT CARDIOPULMONARY RESUSCITATION (DNACPR) DECISIONS

From the NHS
Do not attempt cardiopulmonary resuscitation (DNACPR) decisions – NHS

From Resuscitation council UK
CPR Decisions, DNACPR and ReSPECT | Resuscitation Council UK

An Advance care plan (Statement) is not a legal document but gives an idea of your wishes for your end-of-life care

An advance decision is legally binding in England and Wales

A simple summary of difference between an advance care plan and an advanced decision

From Patient info
End of Life Care | Patient

Advanced care plans

From the NHS
Advance statement about your wishes – NHS

There is detailed information and support for completing advanced statements found under

ADVANCE DECISION

From the NHS
Advance decision (living will) – NHS

There is detailed information and support for completing advanced decisions found under

LASTING POWER OF ATTORNEY

There is detailed information under

Predicting and planning for death

Everyone knows that at some point in their life they will die. Many people will complete a Will many decades before their death (often because they want to avoid the difficulties of completing a Will around their death). Increasingly the same is true for Lasting Power of Attorney.

However, most people will plan what they want to happen around their death only when they are approaching death. This is understandable but the difficulty is that this requires a better understanding when death might occur.

Sometimes a conversation about death between a clinician (community or hospital based) and a patient (and their family) can be straightforward occurring when a patient shows signs of significant deterioration, or has a terminal illness diagnosis or after multiple hospital admissions. However, often it can be difficult as the risk of death is not clear to both the patient or the family. Furthermore, with people living to older ages, if the patient dies when the family do not have insight into the risk of death then they can understandably feel let down. Providing a better understanding can help patients and their families plan for death.

What are predictors of end of life?

As the British Geriatric Society suggest
“Identification is often through situational diagnosis combining clinical indicators indicating end of life need including:

  • Two or more unplanned hospital admissions in the past 6-12 months
  • Persistent and recurrent infections
  • Weight loss of 5-10% in the past 6 months
  • Multiple morbidity in addition to frailty
  • Combined frailty and dementia
  • Delirium
  • Exacerbation of falling
  • Rapidly rising frailty score
  • Escalating patient, family or service provider distress
  • Older person asking for palliative care support and/or withdrawal of active treatment”
    End of Life Care in Frailty: Identification and prognostication | British Geriatrics Society

What are frailty and multiple morbidity?

These important terms are explained in more detail by Patient info
Frailty and Multimorbidity | Assessment and Prevention | Patient

Care home patients

As the British Geriatric Society suggest for care home patients
“The average life expectancy in UK care homes is 24 months for care homes without nursing and 12 months for care homes with nursing. This belies a much more complex picture, where some residents enter a home with one or more rapidly deteriorating medical conditions. Many of this group die shortly after admission, while another group of residents live in care homes for much longer. It follows that all care home residents should be considered for end-of-life care, but it should not be taken for granted that all will need it straight away.” End of Life Care in Frailty: Care homes | British Geriatrics Society

Housebound patients

It is clear that many of the predictors of an end-of-life need can apply in many patients who are housebound (not physically able to leave their home). This is particularly true of frailty as by definition many housebound patients do not have the mobility to leave their home.

Older patients with multiple unplanned hospital admissions and/ or a prolonged admission

One of the difficulties for families of patients who have multiple unplanned admissions or a prolonged admission is that they will understandably remember and focus on what their loved one was like before a prolonged admission or multiple admissions. Though with the excellent rehabilitation available patients can improve they often do not return to their condition before the admission and if combined with other risk factors can signify that they may develop an end-of-life need. This process can be relatively gradual and can be harder for families to accept.

Why is predicting an end-of-life need helpful?

Though no one can precisely predict an end of life need an understanding that end-of-life care should be considered can be very helpful. This can facilitate a conversation between clinicians and patients and their families at a much earlier stage and allow patients and families to come to terms with and plan for death, and understand events which might unfold sometimes more rapidly than expected. In addition, it can support conversations about the value of a hospital admission or if already in hospital what treatments and investigations are being planned and how beneficial they actually are for the patient’s present condition. It can also help with decisions around care in a patient’s own home or in a care home and what might be considered best.

Video explaining the advantages of earlier patient, family and doctor conversations

From the BMJ and Edinburgh University
Though this video is intended for clinicians it visually explains very simply when palliative care might be considered and why the conversations between doctors and patients and between patients and their families could happen much earlier than they often do.
Palliative care from diagnosis to death – YouTube

There is good local and national support after someone dies

Leaflets and booklets

Easy read leaflets

From Marie Curie
Some easy read leaflets covering end of life care Easy read

From Macmillan Cancer Support
be.macmillan – End of life and bereavement

Booklets

Marie Curie have provided some helpful and detailed booklets covering end of life care
A list of all our resources and booklets for anyone affected by terminal illness in the UK Browse all Marie Curie publications

Books

There are also books you can borrow from your local library (for your closest library see under council) or buy, for example

From Kathyrn Mannix (a retired palliative care consultant who worked in the NHS)
With the End in Mind – Kathryn Mannix

NHS 111

If you think you need medical help right now, 111 online can tell you what to do next.

Physiotherapy

You can now self refer for physiotherapy locally

Your Pharmacy

Seven common infections now treated by your local pharmacist

CAMPAIGNS

Show your heart some love, women of Bucks!

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