End of life care:
Planning for the future
Dr Tom Ratcliffe
ST2 GP Manorlands Hospice
Planning for the future
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What the GMC requires
Different types of plans
Making plans in advance
Acting on plans
Sources of help and information
A case study – Maria
• Maria is a 69 year old lady who has just
been diagnosed with Alzheimer’s Disease
• She is attending the surgery to discuss her
diagnosis and plans for the future
A case study – Maria
• What are your professional responsibilities
in this situation?
• When should you raise the possibility of
making plans for the future?
• How would you go about recording Maria’s
wishes?
• What are the potential pitfalls?
• Where might you turn for advice?
End of Life Care (GMC 2010)
• Misunderstandings and conflict at the end
of life can be avoided through advance
care planning
• Advance care planning should be
considered when a patient has a lifelimiting illness in which capacity to make
decisions about treatment may be affected
as the illness progresses
End of Life Care (GMC 2010)
Discussions should cover:
• The patient's wishes, preferences or fears in
relation to their future treatment and care
• The patient’s feelings, beliefs or values
• Details of people that the patient would like
to be involved in decisions about their care
• Preferences around emergency
interventions (i.e. CPR)
• The patient's preferred place of care
• The patient's needs for religious,
spiritual or other personal support
A case study – Maria
• Maria has read a lot about her disease
and spoken to the Alzheimers Society
• She watched her mother, who suffered
from dementia, die in hospital with a
feeding tube for dysphagia and IV
antibiotics for recurrent chest infections
• Maria does not want to end her own life in
like this...
Making plans – considerations...
• Is now the right time?
• What does Maria understand about her
illness?
• Does she want to discuss the future now?
• Does she have capacity presently?
• Is there anyone else you need to involve in
discussions?
• What kind of wishes does Maria have?
Types of plan
• What kind of plans might it be appropriate
to put in place?
– Written or verbal advanced care plan (i.e.
‘preferred priorities for care’)
– Advanced decision to refuse life-sustaining
treatment
– Do not attempt CPR order
– Appointment of a personal welfare Lasting
Power of Attorney
Some ethical and legal issues
• Mental Capacity Act 2005
– Makes provisions for advance planning
– Stipulates that when a patient lacks capacity
doctors must act in the patient’s best interests
with due regard to the patient’s:
• past and present wishes and feelings
• values and beliefs that would be likely to affect
decisions
• other factors the patient might consider were they
able to do so
Some ethical and legal issues
• An advance directive is not valid if:
– The patient has capacity
– A person with lasting power of attorney has been
appointed
– A capacitous decisions has been made to withdraw
the directive
– The patient has done something that is clearly
inconsistent with the advance directive
– The current treatment or circumstances are not
covered by the directive
– There are grounds for believing that there are
circumstances not anticipated by the patient
Some ethical and legal issues
• An advance decision to refuse lifesustaining treatment is only valid if...
– The patient lacks capacity
– The decision is recorded in writing
– It is signed by the patient and a witness
– It includes the statement ‘even if life at risk’
Maria – example
MY ADVANCE DECISION TO REFUSE TREATMENT
My name: Maria Smith
Address: 14 Smith St, Keighley
I have written this document to identify my advance decision. These
are my decisions about my healthcare, in the event that I have lost
my mental capacity and cannot consent to or refuse treatment.
I wish to refuse the following
specific treatments
In these circumstances
Administration of fluids, medication
and/or nutrition by a nasogastric or
percutaneous enterogastric tube
If I become unable to swallow without
risking pulmonary aspiration of fluids,
food or medications due to irreversible
progression of dementia even if this
would mean my life is at risk as a
result
Some pitfalls...
• Advance refusal of certain treatments leads to
poorer quality of life (i.e. refusal of mechanical
ventilation leading to hypoxic brain damage)
• Refusal of simple treatments could lead to
greater distress (i.e. untreated urinary tract
infection in patient with dementia)
• Insistence on only being kept comfortable after a
particular event might restrict opportunities for
rehabilitation (i.e. requesting comfort only
measures after a stroke)
Acting on plans
• Make sure the plan is still valid
• Use the NHS End of Life Care checklist
• Remember that even if a plan is not valid it
may provide some indication about a
patient’s values, beliefs and wishes that
can be used to decide what course of
action is in a patient’s best interests
Sources of information
• Royal College of Physicians: Advance Care
Planning National Guidelines (2009)
• General Medical Council: End of Life Care
(2010)
• NHS End-of-life Care: National Council for
Palliative Care Advance Decisions to Refuse
Treatment A Guide for Health and Social Care
Professionals (2008)
• Societies specialising in different diseases (i.e.
Alzheimer’s Society)
• Local hospice and palliative care team