`end of life care

Question 1

Learning outcomes

Answer 1

 Define Palliative Care
 Discuss the principles of delivering good end of life care
 Identify areas for discussion during advance and anticipatory care planning
 Develop a framework to assess the validity of advance care decisions
 Discuss the importance of good quality care in the last days or hours of life
 Recognition of death

Question 2

What is palliative care from WHO?

Answer 2

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness
through the prevention and relief of suffering by
means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual

Question 3

Define the end of life via GMC guidance

Answer 3

 ‘Approaching the end of life’
– likely to die within the next 12 months
 Thosefacingimminentdeath&thosewith: – Advanced, progressive, incurable conditions
– General frailty (likely to die in 12 months)
– At risk of dying from sudden crisis of condition
– Life threatening conditions caused by sudden catastrophic events

Question 4

What are the aims of palliative care

Answer 4

 Wholepersonapproach HOLISTIC
 Focus on quality of life, including good symptom control
 Care encompassing the person with the life- threatening illness and those that matter to them

Question 5

What are the principles of good end of life care

Answer 5

 Open lines of communication
 Anticipating care needs and encouraging discussion
 Effective multidisciplinary team input
 Symptom control – physical and psycho-spiritual
 Preparing for death - patient & family
 Providing support for relatives both before and after death

Question 6

Discuss psycho-spiritual distress

Answer 6

(Mind) (Soul)
 Exacerbatesphysical symptoms
 Multifactorial
 Remembertoconsider:
– Uncontrolled physical symptoms
– Alcohol / drug withdrawal
– Depression
– Other medical causes e.g. hyperthyroidism

Question 7

Discuss key themes for development

Answer 7

 Early identification of patients who may need palliative care
 Advance/anticipatorycareplanning(including decisions regarding cardiopulmonary resuscitation (DNACPR))
 Care in last days/hours of life
 Delivery of effective and timely care

Question 8

What should be discussed in advance and anticipatory care planning?

Answer 8

 Wishes / preferences / fears about care
 Feelings/ beliefs / values that may influence future
choices
 Who should be involved in decision making?
 Emergency interventions e.g. CPR
 Preferred place of care
 Religious / spiritual / other personal support
 May wish to make an Advance & Anticipatory care plan / formalise wishes regarding care

Question 9

Discuss formalising wishes

Answer 9

 Advance Statement
– A “statement that sets down your preferences, wishes,
beliefs and values regarding your future care”
 Advance Decision
– A “decision you can make now to refuse specific
treatments in the future”
– Terms used include ‘Advance Decision to Refuse Treatment’ (ADRT) / ‘Advance Directive’, “Advance refusal of treatment”,
“Living Will”
 Power of Attorney

 Considerpatient’swishes(intheeventtheyareunableto express them- i.e. loss of capacity):
– What they would like to happen – What they don’t want to happen – Who will speak for them

Question 10

Discuss advance statements

Answer 10

 Setting down preferences, wishes, beliefs and values regarding future care
 Aim to provide guidance if patient loses capacity to make decisions or to communicate them
 Informs about patient’s wishes
 Request will be given weight
 BUT…future decisions can’t be bound by their statement
 Treatment must be of overall benefit to the patient

Question 11

Discuss advance decision

Answer 11

 Advance refusal of treatment / Advance directive / “ADRT” / ”Living Will”
 Decision to refuse a specific type of treatment at some time in the future
 Makes a patient’s wishes known if unable to make or communicate decisions
 May be issues around life sustaining treatment (e.g. ventilation / resuscitation status (DNACPR) etc.)
 Validity and applicability need to be considered

Question 12

How do you know an advance decision is valid?

Answer 12

 Is it clearly applicable?
 When was it made?
 Did the patient have capacity when it was made?
 Was it an informed decision?
 Were there any undue influences when made?
 Has the decision been withdrawn?
 Are more recent actions / decisions inconsistent?

Question 13

What laws we gotta know

Answer 13

 ‘MentalCapacity’Act,2005(EnglandandWales) – Specific sections within Act covering ADRT
 ‘AdultswithIncapacity’Act(Scotland),2000
– No specific framework for Advance Decisions in Scotland,
but must comply with the Act
 In determining what, if any, intervention is to be made, account shall be taken of past and present wishes and feelings of the adult

Question 14

What is the gold standards framework (GSF)

Answer 14


“Systematic, evidence based approach to optimising care for all patients approaching the end of life, delivered by generalist frontline care providers”:
– For people considered to be at any stage in the final years of life; – For people with any condition or diagnosis
– For people in any setting, in whichever bed they are in
– Provided by anyone in health or social care
– At any time needed
http://www.goldstandardsframework.org.uk/ Accessed 23/10/2018
‘Every organisation involved in providing end of life care will be expected to adopt a coordination process such as the GSF’
Department of Health End of Life Care Strategy 2008

Question 15

What are the 5 priorities for care of dying people from the independent review into Liverpool care pathway

Answer 15

1.
2. 3.
4. 5.
The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.
Sensitive communication takes place between staff and the dying person, and those identified as important to them.
The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

Question 16

Discuss 4 principles for care for people in the last days and hours of life

Answer 16

 Principle 1: Informative, timely and sensitive communication is an essential component of each individual person’s care
 Principle 2: Significant decisions about a person’s care, including diagnosing dying, are made on the basis of multi- disciplinary discussion
 Principle 3: Each individual person’s physical, psychological, social and spiritual needs are recognised and addressed as far as is possible
 Principle 4: Consideration is given to the wellbeing of relatives or carers attending the person

Question 17

Discuss the who pain ladder

Answer 17

• “The WHO pain ladder is a framework for providing symptomatic pain relief. The three-step approach is inexpensive and 70–90% effective
• By mouth
The oral route is preferred for all steps of the pain ladder
• By the clock
Cancer pain is continuous - analgesics should be given at
regular intervals, not on demand
• Adjuvants
To help calm fears and anxiety, adjuvant drugs may be
added at any step of the ladder”

Question 18

Discuss support and care after death

Answer 18

 Support for families
– Chaplain
– Counsellors
– Family workers
– Health care professionals
 Establishing a relationship with the family during end of life care helps to facilitate this
 Communicating with all involved e.g. GP / district nurses

Question 19

Discuss recognition of death

Answer 19

“The simultaneous and irreversible onset of apnoea and unconsciousness in the absence of the circulation“
• Observe and confirmed for minimum of 5 minutes
• Apnoea i.e. no respiratory effort; no breath sounds
• See following slides

Question 20

How do you recognise death

Answer 20

•In primary care absence of mechanical cardiac function is normally confirmed by:
 Absence of a central pulse
 Absence of heart sounds
•In hospital can be supplemented by one or more of:
 Asystole on a continuous ECG
 Absence of pulsatile flow using direct intra-arterial
pressure monitoring
 Absence of contractile activity using echo
• After five minutes of continued cardiorespiratory arrest confirm:
 absence of pupillary responses to light
 absence of the corneal reflexes
 absence of any motor response to supra-orbital pressure
• For further details see link to “Diagnosing death using neurological criteria” (Galen) – will revisit in MD4000