27-10-22 – 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

How often is palliative care required in Scotland?

How does WHO define palliative care?

Answer 2

• In Scotland, over 54,000 people die each year –
• It is estimated 40,000 people each year and their families will require palliative care
• How WHO defines palliative care:
• Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness (not looking for cure)
• 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

What are 3 ways the new concept of palliative care differs from the old concept?

Answer 3

• 3 ways the new concept of palliative care differs from the old concept

1) In the new concept, it is acknowledged that disease can me modifiable, and potentially curable, and both of these things can change over time

2) Supportive and palliative care is given the entire time of having disease, with it increasing towards death

3) Bereavement care occurs before and after death for both the patient and their family

Question 4

What are 2 ways the ‘end of life’ can be defined?

What should the conceptive of palliative care not only be linked to?

What are 4 non-cancerous diseases that require palliation of symptoms?

Answer 4

• 2 ways the ‘end of life’ can be defined:

1) ‘Approaching the end of life’
* Likely to die within the next 12 months

2) Those facing imminent death & those:
* With advanced, progressive, incurable conditions
* With general frailty (likely to die in 12 months)
* At risk of dying from sudden crisis of condition
* With life threatening conditions caused by sudden catastrophic events

• The concept of palliative care should not be linked only to malignant disease
• 4 non-cancerous diseases that require palliation of symptoms:
  1) Motor Neurone disease
  2) End-stage Cardiac failure
  3) End-stage COPD
  4) Advanced renal disease

Question 5

What are the 3 palliative care aims?

Answer 5

• 3 palliative care aims:

1) Whole person approach - Holistic

2) Focus on quality of life, including good symptom control

3) Care encompassing the person with the life-threatening illness and those that matter to them

Question 6

What are 6 principles of good end of life care?

Answer 6

• 6 principles of good end of life care:

1) Open lines of communication – not a doctor centre process

2) Anticipating care needs and encouraging discussion
* More planning than just reacting
* What can be put in place so when symptoms develop, we have an action plan

3) Effective multidisciplinary team input

4) Symptom control – physical and psycho-spiritual

5) Preparing for death - patient & family

6) Providing support for relatives both before and after death

Question 7

What is generalist palliative care?

What is specialist palliative care?

Answer 7

• Generalist palliative care:
• Integral part of the routine care delivered by all health and social care professionals to those living with a progressive and incurable disease, whether at home, in a care home, or in hospital
• Specialist palliative care:
• Based on the same principles of palliative care, but can help people with more complex palliative care needs

Question 8

What are 10 examples of staff that can make up a multi-disciplinary team?

Answer 8

• 10 examples of staff that can make up a multi-disciplinary team:

1) Specialist nurses (community, hospice, other)

2) Palliative care doctors

3) GP

4) Secondary care (non-palliative teams)

5) District nurses
* District nurses make a difference every day to the lives of the people they visit at home and in residential care homes

6) Occupational therapists
* Aid in maintaining daily living of those with physical, mental or cognitive impairments
* E.g modifications to home is a result of occupational therapy

7) Dieticians

8) Physiotherapists
* Help people affected through injury, illness or disability through movement and exercise

9) Counsellors
* Counsellors work with clients experiencing a wide range of emotional and psychological difficulties to help them bring about effective change and/or enhance their wellbeing

10) Chaplain etc

Question 9

What are 4 examples of complementary therapies in multidisciplinary teams?

Answer 9

• 4 examples of complementary therapies in multidisciplinary teams:
  1) Music
  2) Gentle touch
  3) Pets
  4) Aromatherapy

Question 10

What can we be looking for when assessing a palliative patient’s symptoms?

What are 7 examples of physical symptoms we can see in palliative patients?

Answer 10

• When assessing palliative patients’ symptoms, we are looking for concurrent illnesses, the treatment of which will make the patient feel better
• 7 examples of physical symptoms we can see in palliative patients:
  1) Pain
  2) Dyspnoea
  3) Nausea / vomiting
  4) Anorexia / weight loss
  5) Constipation
  6) Fatigue
  7) Cough

Question 11

What is the effect of psycho-spiritual distress on physical symptoms?

What do we need to have?

What can make up psycho-spiritual distress?

What should we also consider in regards to psycho-spiritual distress?

What are 4 examples of this?

Answer 11

• Psycho-spiritual distress can exacerbate physical symptoms
• We need to have an action plan in place to prevent psycho-spiritual distress
• Psycho-spiritual distress can be multifactorial
• We have to consider if other factors are contributing to/driving this distress, such as:
  1) Uncontrolled physical symptoms
  2) Alcohol / drug withdrawal
  3) Depression
  4) Other medical causes e.g. hyperthyroidism

Question 12

What is the effect of psycho-spiritual distress on physical symptoms?

What do we need to have?

What can make up psycho-spiritual distress?

What should we also consider in regard to psycho-spiritual distress?

What are 4 examples of this?

Answer 12

• Psycho-spiritual distress can exacerbate physical symptoms
• We need to have an action plan in place to prevent psycho-spiritual distress
• Psycho-spiritual distress can be multifactorial
• We have to consider if other factors are contributing to/driving this distress, such as:
  1) Uncontrolled physical symptoms
  2) Alcohol / drug withdrawal
  3) Depression
  4) Other medical causes e.g. hyperthyroidism

Question 13

What are 4 key themes of development of palliative care?

Answer 13

• 4 key themes of development of palliative care:

1) Early identification of patients who may need palliative care

2) Advance/anticipatory care planning (including decisions regarding cardiopulmonary resuscitation (DNACPR))

3) Care in last days / hours of life

4) Delivery of effective and timely care

Question 14

How does NHS Education for Scotland define Advance/anticipatory care planning?

Answer 14

• How NHS Education for Scotland defines Advance/anticipatory care planning:
• ‘…an ongoing process of discussion between the patient, those close to them and their care providers, focusing on that person’s wishes and preferences for their future.
• It is perhaps best defined as an umbrella term potentially covering a number of component planning processes, legal, personal and clinical’

Question 15

What 7 things should be discussed in advance/anticipatory care planning?

Answer 15

• 7 things that should be discussed in advance/anticipatory care planning:

1) Wishes / preferences / fears about care

2) Feelings/ beliefs / values that may influence future choices

3) Who should be involved in decision making?

4) Emergency interventions e.g. CPR

5) Preferred place of care

6) Religious / spiritual / other personal support

7) May wish to make an Advance & Anticipatory care plan / formalise wishes regarding care

Question 16

What is the definition of an advance/anticipatory care plan?

Answer 16

• Definition of an advance/anticipatory care plan:
• “A dynamic record that should be developed over time through an evolving conversation, collaborative interactions and shared decision making.
• It is a summary of “thinking ahead” discussions between the person, those close to them and the practitioner”

Question 17

What is the point of formalising a patient’s wishes?

What 3 things should we consider?

What are the 3 different ways a patient’s wish can be formalised?

Answer 17

• The point of formalising patient wishes is to consider patient’s wishes in the event they are unable to express them i.e. loss of capacity
• We should consider:
  1) What they would like to happen
  2) What they don’t want to happen
  3) Who will speak for them
• 3 different ways a patient’s wish can be formalised:
  1) Advance statement
  2) Advance decision
  3) Power of attorney

Question 18

What is an advance statement?

What does it aim to provide?

Is this legally binding?

When is it followed?

Answer 18

• An advance statement is a statement that sets down your preferences, wishes, beliefs and values regarding your future care
• It aims to provide guidance if patient loses capacity to make decisions or to communicate them
• Advance statements are not legally binding, but are given weight
• Advance statements are followed if it is appropriate to do so, and is of overall benefit to the patient

Question 19

What is an advance decision?

What are 5 different names for an advance decision?

What does it allow the patient to do?

When might an advance decision include issues about?

Are advance decisions legal binding?

Answer 19

• An advance decision is a decision you can make now to refuse specific treatments in the future e.g refusal of CPR – DNACPR
• Different names for an advance decision:
  1) Advance decision to refuse treatment
  2) Advance directive
  3) Advance refusal of treatment
  4) ADRT
  5) ‘Living will’
• An advance decision allows patient to refuse a specific type of treatment at some time in the future and makes a patient’s wishes known if unable to make or communicate decisions
• Advance decisions may involve issues around life sustaining treatment (e.g. ventilation / resuscitation status (DNACPR) etc.)
• Advance decisions can be legally binding if considered valid and applicable

Question 20

What 7 questions do we ask to assess if an advance decision is valid?

Answer 20

• 7 questions we ask to assess if an advance decision is valid:
  1) Is it clearly applicable?
  2) When was it made?
  3) Did the patient have capacity when it was made?
  4) Was it an informed decision?
  5) Were there any undue influences when made?
  6) Has the decision been withdrawn?
  7) Are more recent actions / decisions inconsistent with an advance decision in place?

Question 21

What is power of attorney?

What does a patient need to have to do this?

What are the 3 different types of power of attorney?

Which ones are ongoing and temporary?

What situations are they each used for?

Answer 21

• Power of attorney is when a patient nominates a person to make decisions on their health care in the future should they lose capacity
• A patient must have capacity to put a power of attorney in place
• 3 different types of power of attorney:

1) Lasting power of attorney
* Ongoing arrangement
* Someone is appointed to make decisions about ongoing health and welfare and or property and financial matters on behalf of the patient
* Continues even when patient loses capacity

2) Enduring power of attorney
* Ongoing arrangement
* Someone is appointed to make decisions about property and financial matters on behalf of the patient
* Continues even when patient loses capacity

3) Ordinary power of attorney
* Temporary arrangement
* Someone is appointed to make decisions about financial matters on behalf of the patient
* Only valid while the patient still has the mental capacity to make their own decisions

Question 22

What does the ‘mental capacity’ act 2005 (England and Wales) cover?

How does ‘Adults with Incapacity’ Act (Scotland), 2000 link with advance decision?

Answer 22

• Specific sections in the ‘Mental Capacity’ act 2005 (England and Wales) cover Advance decision
• In the ‘Adults with Incapacity’ Act (Scotland), 2000, there is no specific framework for Advance Decisions in Scotland, but they 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 23

According to the NHS, what 4 criteria do we use for assessing capacity?

Answer 23

• In the NHS, someone is not assessed to have capacity if they cannot:
  1) Understand information about the decision
  2) Remember that information
  3) Use that information to make a decision
  4) Communicate their decision by talking, using sign language or any other means

Question 24

What are 4 pros of formalising wishes?

What are 4 cons of formalising wishes?

Answer 24

• 4 pros of formalising wishes:

1) Enhances autonomy

2) May encourage improve discussions on end-of-life decisions

3) Avoid breaching patient’s personal / religious beliefs

4) Death with dignity

• 4 cons of formalising wishes:

1) May not be valid

2) May not be applicable

3) Attitudes may change with onset of serious illness

4) May have been advances in medicine since being made

Question 25

What is Gold Standards Framework (GSF)?

What 3 groups of is it for?

Who is it provided by?

What is every organisation involved in providing end of life care expected to adopt?

Answer 25

• Gold Standards Framework (GSF) is a systematic, evidence-based approach to optimising care for all patients approaching the end of life, delivered by generalist frontline care providers
• GSF is for:
  1) People considered to be at any stage in the final years of life;
  2) People with any condition or diagnosis
  3) People in any setting, in whichever bed they are in
• GSF Is provided by anyone in health or social care at any time needed
• Every organisation involved in providing end of life care will be expected to adopt a coordination process such as the GSF

Question 26

What is the LCP report?

What were 2 findings of the LCP report?

What were 2 responses of the LCP report?

Answer 26

• The LCP report was an independent review into Liverpool Care Pathway (LCP) in July 2013
• 2 findings of LCP report:
  1) Where used properly, many people died peaceful, dignified deaths
  2) In many cases it was associated with poor experiences of care
• 2 responses of the LCP report (more care: less pathway approach):
  1) ‘One chance to get it right’- 5 priorities for care of dying people
  2) ‘Care for people in the last days and hours of life’

Question 27

What are the 5 priorities for care of dying people?

Answer 27

• 5 priorities for care of dying people:

1) 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.

2) Sensitive communication takes place between staff and the dying person, and those identified as important to them.

3) 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

4) The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

5) 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 28

What are the 4 principles of care for people in the last days and hours of life?

Answer 28

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

1) Principle 1: Informative, timely and sensitive communication is an essential component of each individual person’s care

2) Principle 2: Significant decisions about a person’s care, including diagnosing dying, are made on the basis of multi-disciplinary discussion

3) Principle 3: Each individual person’s physical, psychological, social and spiritual needs are recognised and addressed as far as is possible

4) Principle 4: Consideration is given to the wellbeing of relatives or carers attending the person

Question 29

What is the WHO pain ladder?

What does it consist of?

Why is advantageous?

Why are adjuvant drugs used in the pain ladder?

What are the 3 steps of the WHO analgesic ladder for cancer pain?

What does by the mouth mean?

What does by the clock mean?

Answer 29

• The WHO pain ladder is a framework for providing symptomatic pain relief.
• The three-step approach is inexpensive and 70–90% effective
• To help calm fears and anxiety, adjuvant drugs may be added at any step of the ladder
• 3 steps of the WHO analgesic ladder for cancer pain:

1) Non-opioid
* E.g aspirin, paracetamol or NSAID
* +/- adjuvant
* If pain is persisting or increasing, move on to the next step

2) Weak opioid
* For mild to moderate pain e.g codeine
* +/- non-opioid
* +/- adjuvant
* If pain is persisting or increasing, move on to the next step

3) Strong opioid
* For moderate to severe pain e.g morphine
* +/- non-opioid
* +/- adjuvant

• ‘By the mouth’ means that the oral route is preferred for all steps of the pain ladder
• ‘By the clock’ means analgesics should be given at regular intervals, not on demand (i.e not just when pain starts, as cancer pain is continuous)

Question 30

What 4 ways can we provide support for families after death?

What can help facilitate care to families after death?

Who else should there be communication between?

Answer 30

• 4 ways can we provide support for families after death:
  1) Chaplain
  2) Counsellors
  3) Family workers
  4) Health care professionals
• Establishing a relationship with the family during end-of-life care helps to facilitate care to families after death
• There should also communication with all those involved e.g GP/district nurses

Question 31

How does Academy of Medical Royal Colleges (2008) define death?

What is apnoea?

What are 2 ways absence of mechanical cardiac function is confirmed in primary care?

What are 3 ways this can be supplemented in the hospital?

After five minutes of continued cardiorespiratory arrest, what 3 things do we confirm?

Answer 31

• Academy of Medical Royal Colleges (2008) definition of death:
• “The simultaneous and irreversible onset of apnoea and unconsciousness in the absence of the circulation “
• Apnoea i.e. no respiratory effort; no breath sounds
• 2 ways absence of mechanical cardiac function is confirmed in primary care:
  1) Absence of a central pulse
  2) Absence of heart sounds
• 3 ways this can be supplemented in the hospital:
  1) Asystole on a continuous ECG
  2) Absence of pulsatile flow using direct intra-arterial pressure monitoring
  3) Absence of contractile activity using echo
• After five minutes of continued cardiorespiratory arrest, we confirm:
  1) Absence of pupillary responses to light
  2) Absence of the corneal reflexes
  3) Absence of any motor response to supra-orbital pressure