End of life care

Question 1

Care of the Dying is..

Answer 1

one of the fundamental tasks of a good doctor

Question 2

Today, what are the most common causes of death?

Answer 2

cancer and IHD
men aged 15-34 = suicide
accidents = 38% in young boys and 23% in girls

Question 3

Describe features of an unexpected death (3)

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

Describe features of an expected death (2)

Answer 4

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

It is often misleadingly only associated with cancer.

Question 5

Palliative care is a more helpful term for the management of conditions until ?

Answer 5

the terminal phase is reached.

Question 6

What does palliative care encompass?

Answer 6

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.

Question 7

identifying patients early that require palliative care allows?

Answer 7

discussions of the 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 8

What is palliative care alongside?

Answer 8

the medical management of their condition and as time and their condition progresses the balance between managing the condition and managing the process of dying change to focus more on supportive and palliative care.

Question 9

Palliative care main aim?

Answer 9

to improve the quality of life of a patient

Question 10

Where is most palliative care provided?

Answer 10

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

Question 11

What is the WHO description of palliative care?

Answer 11

‘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 12

What is stated in the Scottish governments living and dying well plan?

Answer 12

WHO definition followed by:
- 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.’ 2

Question 13

WHO - Palliative care features (7)

Answer 13

• 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 14

Ways of pre-emptying problems?

Answer 14

symptom control, aids in the home, care staff, night nurses

Question 15

Discussions should happen early between?

Answer 15

Patient, specialist, family, MDT team, OOH’S

Question 16

How do we recognise that someone is in need of palliative care or that someone is dying? (3)

Answer 16

Often the MDT team will tell you
The patient themselves or their family might tell you
Clinical skill and experience – knowledge of the patient over time

Question 17

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

Answer 17

The ‘Supportive and Palliative Care Indicators Tool’ - guide for doctors to consider patient’s with a life-limiting diagnosis e.g. cancer or worsening chronic e.g. COPD - highlights if they are at a stage palliative care should take place

Question 18

Use of the palliative performance scale? - what does a lower PPS score mean?

Answer 18

low- at initial assessment indicated poorer prognosis

Question 19

What does a falling PPS score cause?

Answer 19

increased the risk of death compared with patients whose PPS scores remained static or improved.

Question 20

PPS scores are determined by?

Answer 20

reading horizontally at each level to find a ‘best fit’ for the patient who is then assigned as the PPS % score.

Question 21

Why may a PPS score be used? (3)

Answer 21

• excellent communication tool for quickly describing a patient’s current functional level.
• may have value in criteria for workload assessment or other measurements and comparisons
• has prognostic value

Question 22

Trajectory of cancer?

Answer 22

Most weight loss, reduction in performance status and impaired ability occurs in the last few months - often time to put palliative care plans in place - may need resources eg hospice bed or marie curie nurses.

Question 23

Trajectory of heart failure or COPD?

Answer 23

Patients unwell for months or years with acute, often severe, exacerbations. Deteriorations often associated with hospital admissions and intensive treatment and lead to an overall gradual deterioration in health - each exacerbation may result in DEATH.

Question 24

Trajectory of dementia/frailty

Answer 24

Progressive disability from an already low baseline of cognitive or physical functioning. Combination of declining reserves and other events that in themselves may seem trivial (e.g. minor illness, falls, or just the difficulty of continuing with daily tasks) lead to death. The trajectory can be cut short by an acute event such as pneumonia or a fractured neck of femur which results in the patient dying sooner than expected.

Question 25

Understanding a disease trajectory allows for? (3)

Answer 25

1. Discussion with the patient about how their illness will progress – help them gain control over their illness 2. Early planning for care when nearing death including discussion regarding where they wish to die, DNR directives. 3. Significant challenges particularly in managing patients with the second trajectory.

Question 26

Limitations of disease trajectory? (3)

Answer 26

1. Patients may not follow it as concurrent illness or change in circumstances affect outcome 2. Some illnesses don’t fit well e.g. stroke (depends on severity of stroke) or renal failure (steady decline determined by underlying condition) 3. Does not map well for psychological or spiritual distress

Question 27

planning with the patient and their Carers what they want for their future care is called?

Answer 27

'Anticipatory Care Planning'

Question 28

Once discussions have taken place and a patient is diagnosed as at a palliative state of care, what happens next?

Answer 28

practice's Palliative Care Register - coordinates and enables ongoing care

Question 29

Once a patient is on the palliative care register, what happens next?

Answer 29

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. Patient will be reviewed regularly.

Question 30

Palliative Care in Primary Care (4)

Answer 30

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 31

Symptoms and palliative care? (4)

Answer 31

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 32

The team involved in palliative care? (5-6)

Answer 32

In addition to the Health and Social Care Partnership Team: Macmillan Nurses, CLAN, Marie Curie Nurses, Religious or Cultural Groups amongst other support networks.

Question 33

Most palliative patients request?

Answer 33

home death 65% - only 26% actually achieve this

Question 34

The Gold standards framework offers tools to enable? - what does this include setting up? (3)

Answer 34

enable primary care to provide palliative care at home. - cancer register, reviewing these patients and reflective practice (eg SEA’s)

Question 35

% of deaths that occur in hospices?

Answer 35

15-20%

Question 36

What makes a 'good death' - the aim

Answer 36

working together with the multidisciplinary team and planning with the patient and carers is to achieve a 'good death' for our patients and their families based on their perspective.

Question 37

What makes a 'good death' - the principles (

Answer 37

1. Pain-free death 2. Death at home surrounded by family and friends 3. To know when death is coming, and to understand what can be expected 4. To be able to retain control of what happens 5. To be afforded dignity and privacy 6. To have control over pain relief and other symptom control 7. To have choice and control over where death occurs (at home or elsewhere) 8. To have access to any spiritual or emotional support required

Question 38

Breaking bad news to a patient about a diagnosis? (8)

Answer 38

``` 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 39

What are the main patient reactions to bad news?

Answer 39

``` Shock Anger Denial Bargaining Relief Sadness Fear Guilt Anxiety Distress ``` Over time = ACCEPTANCE

Question 40

After Death - support?

Answer 40

the Health and Social Care Partnership Team is also there to support the bereaved.

Question 41

Describe some of the features of Grief? (5)

Answer 41

1. Is an individual experience 2. Is a process that may take months or years 3. Patients may need to be reassured that they are normal 4. Abnormal or distorted reactions may need more help 5. Bereavement is associated with morbidity and mortality

Question 42

What is euthanasia and the 3 different types?

Answer 42

Means ‘gentle’ or ‘easy’ death Voluntary Euthanasia – patients request Non Voluntary Euthanasia – no request Physician assisted suicide – Physician provides the means and the advice for suicide.

Question 43

Why do people request euthanasia? (3)

Answer 43

- often those with an advanced disease - unrelieved symptoms or the dread of further suffering. - Some studies indicate that 60% of patients requesting euthanasia are depressed.

Question 44

Exploring euthanasia - responses? (7)

Answer 44

``` 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 ```