End of Life Care

Question 1

What does end of life care in the community allow?

Answer 1

elements of continuity
knowledge of the patient and the family
allows time for conversations and planning

Question 2

What are the main causes of death?

Answer 2

Cancer and IHD
In the young, accidents account for 38% of deaths in boys and 23% in girls.
In men age 15-34 suicide is the main cause.

Question 3

What is the impact of an unexplained death?

Answer 3

Causes a profound sense of shock.
No chance to say goodbye, or take back hasty words.
Accidents might be compounded by multiple deaths, legal involvement or even press coverage.
Deaths of children carry an even more profound sense of shock. SIDS has no definite diagnosis and may carry the stigma of parental blame.

Question 4

What does an expected death allow?

Answer 4

Terminal care is the last phase of care when a patients condition is deteriorating and death is close.

Question 5

When is palliative care a more helpful term?

Answer 5

For the management of conditions until the terminal phase is reached.

Question 6

What is palliative care?

Answer 6

A philosophy of care that emphasises quality of life.
Is performed by a multi disciplinary team.
Communication between members is essential

Question 7

Where is palliative care provided?

Answer 7

Most provided in primary care with support from specialist practitioners and specialist palliative care units (or hospices).

Question 8

What can be the role of GPs in palliative care?

Answer 8

GP’s can act as companions on a journey for patients undergoing palliative care.

Question 9

What does the WHO state about palliative care?

Answer 9

Palliative care improves the quality of life of patients and families who face life- threatening illness, by providing pain and symptom relief, spiritual and psychosocial support… from diagnosis to the end of life and bereavement.

Question 10

In 2008 what did the Scottish Government develop?

What is the name of this plan?

What does it state?

Answer 10

A national action plan for palliative and end of life care.

‘Living and Dying Well’

‘Palliative care is not just about care in the last months, days and hours of a person’s life, but about ensuring quality of life for both patients and families at every stage of the disease process from diagnosis onwards…. Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement.’

Question 11

How have the concepts of palliative care compare?

Answer 11

See diagram.

Question 12

Why is important to consider palliative care from and early stage?

Answer 12

Palliative care encompasses end of life care regardless of cause of illness, and as doctors we are encouraged to consider which of our patients would benefit from palliative planning and treatment from early on in their illness. This is a change in previous thinking of palliative care. By identifying early which patients are likely to need palliative care we can discuss patient’s wishes with them and try where possible to care for them where they want to be treated and in a way that they want to be.

Question 13

What different journeys can a dying person experience?

Answer 13

The traditional route (admissions to hospital)

Zero Delays Decision Support (enabling death at home)

Question 14

How do you know if a patient is at a Palliative Stage?

Answer 14

The ‘Supportive and Palliative Care Indicators Tool’ (figure 1), is a guide for doctors to consider their patients who have a life-limiting diagnosis (eg. Cancer), or a worsening chronic condition (e.g. COPD), and highlight if they are at a stage where supportive and palliative care should take place. This starts with ‘Anticipatory Care Planning’, planning with the patient and their Carers what they want for their future care.

Question 15

What is the ‘Supportive and Palliative Care Indicators Tool’?

Answer 15

See diagram.

Question 16

What questions need to be considered in end of life planning?

Answer 16

Where do they want to be cared for?
Do they want to be resuscitated in the event of cardiac arrest? Or do they want to be allowed to die naturally?
Who do they want to be informed of their care and any changes in their condition?
Are they fully aware of their prognosis?
Is their family aware of their prognosis?

Question 17

What should happen once a patient has been diagnosed as at a palliative stage of care, and these discussions have taken place?

Answer 17

The patient should be placed on the practice’s Palliative Care Register.

Question 18

What happens once on the palliative care register?

Answer 18

The plan for the patient should be sent to the Out of Hours service so that anyone who may be involved in the patient’s care is aware of the patient’s wishes. The practice will have regular palliative care meetings to discuss the patients on the palliative care register, with the Multi- disciplinary team present, to ensure that everyone is aware of how the patient is. The patient will also be reviewed regularly. The Palliative Performance Scale can be used to evaluate how quickly the situation is changing for the patient and see if their care needs re-evaluated.

Question 19

What is the Palliative Performance Scale?

Answer 19

See diagram.

Question 20

What are the instructions for use of PPS?

Answer 20

PPS scores are determined by reading horizontally at each level to find a ‘best fit’ for the patient who is then assigned as the PPS % score.
Begin at the left column and read downwards until the appropriate ambulation level is reached, then read across to the next column and downwards again until the activity/evidence of disease is located. These steps are repeated until all five columns are covered before assigning the actual PPS for that patient. In this way ‘leftward’ columns (columns to the left of any specific column) are ‘stronger’ determinants and generally take precedence over others.

Question 21

What increments are PPS scores on?

Answer 21

PPS scores are in 10% increments only. Sometimes, there are several columns easily placed at one level, but one or two which seem better at a higher or lower level. One then needs to make a ‘best fit’ decision. Choosing a ‘half-fit’ value of PPS 45%, for example, is not correct. The combination of clinical judgement and ‘leftward precedence’ is used to determine whether 40% or 50% is the more accurate score for that patient.

Question 22

Why is PPS used?

Answer 22

PPS may be used for several purposes. First, it is an excellent communication tool for quickly describing a patient’s current functional level. Second, it may have value in criteria for workload assessment or other measurements and comparisons. Finally, it appears to have prognostic value.

Question 23

What are different disease trajectories?

Answer 23

See diagram.

Question 24

How are palliative care wishes communicated in primary care?

Answer 24

Practices have a register of palliative patients.
The practice team meet regularly to discuss the cases.
Enhances communication between team members.
OOH also notified of palliative cases.

Question 25

How should symptoms be managed?

Answer 25

Pain is often feared by patients.
No symptoms should be ignored.
For example anxiety, insomnia, and nausea may all be significant and distressing symptoms.
It is important to respond globally to the patient and his or her family.

Question 26

What is the role of palliative care, according to WHO? (Seven Points)

Answer 26

Provides relief from pain and other distressing symptoms
Affirms life and regards dying as a normal process
Intends neither to hasten nor postpone death
Integrates the psychological and spiritual aspects of patient care
Offers a support system to help patients live as actively as possible until death
Offers a support system to help the family cope during the patients illness and in their own bereavement.
Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated.

Question 27

Who can be involved in the palliative care team?

Answer 27

In addition to the Health and Social Care Partnership Team discussed previously, there are several professionals that may be involved in palliative care situations.
These could include Macmillan Nurses, CLAN, Marie Curie Nurses, Religious or Cultural Groups amongst other support networks.

Question 28

What is a ‘Good Death’?

Answer 28

Pain-free death
Open acknowledgement of the imminence of death
Death at home surrounded by family and friends
An ‘aware’ death, in which personal conflicts and unfinished business are resolved
Death as personal growth
Death according to personal preference and in a manner that resonates with the person’s individuality

Question 29

What is the preferred place of care?

Answer 29

Most people express the preference for a home death.
Only 26% achieve this.
Most of the final year is spent at home however.

Question 30

What does the Gold Standards Framework offer?

Answer 30

Tools to enable primary care to provide palliative care at home. These include setting up a cancer register, reviewing these patients and reflective practice (eg SEA’s)

Question 31

How do you break bad news?

Answer 31

Listen
Set the Scene
Find out what the patient understands
Find out how much the patient wants to know
Share information using a common language
Review and summarise
Allow opportunities for questions
Agree follow up and support

Question 32

What are the possible reactions to bad news?

Answer 32

Shock
Anger 
Denial
Bargaining
Relief 
Sadness
Fear
Guilt
Anxiety
Distress

Question 33

How can reactions change over time?

Answer 33

See diagram.

Question 34

What is available after death?

Answer 34

Following the death of a loved one, the Health and Social Care Partnership Team is also there to support the bereaved.

Question 35

Who described the stages of adjustment in grief, and when is it useful to consider?

Answer 35

The stages of adjustment in grief have been described by Parkes and are useful to consider not only when dealing with bereavement, but also when a patient is given bad news or a life - limiting diagnosis.

Question 36

What is grief?

Answer 36

Is an individual experience
Is a process that may take months or years
Patients may need to be reassured that they are normal
Abnormal or distorted reactions may need more help
Bereavement is associated with morbidity and mortality

Question 37

What is the role of hospices?

Answer 37

15-20% of deaths occur here depending on the area.
Form part of the multidisciplinary care team.
Are generally underfunded.

Question 38

What does euthanasia mean?

Answer 38

Means ‘gentle’ or ‘easy’ death

Has now come to mean the deliberate ending of a persons life with or without their request

Question 39

What are the different forms of euthanasia?

Answer 39

Voluntary Euthanasia – patients request
Non Voluntary Euthanasia – no request
Physician Assisted Suicide – Physician provides the means and the advice for suicide

Question 40

What is the legality surrounding euthanasia?

Answer 40

Illegal in the UK
Ongoing national debate.
In 1994 House of Lords recommended no change.
In the Netherlands the law changed in the late 1990’s to allow euthanasia under certain circumstances

Question 41

Why do people request euthanasia?

Answer 41

Less researched than the ethical arguments for and against.
Perhaps 3-8% of patients with advanced disease will ask to die.
The most common reasons are unrelieved symptoms or the dread of further suffering.
Some studies indicate that 60% of patients requesting euthanasia are depressed.

Question 42

What is the response to a patient requesting euthanasia?

Answer 42

Listen
Acknowledge the issue
Explore the reasons for the request
Explore ways of giving more control to the patient
Look for treatable problems
Remember spiritual issues
Admit powerlessness