Terminal Care

Question 1

What are the prinicples of palliative & end of life care?

Answer 1

1. Involving patient and those close to them
2. giving access and early referral to specialist palliative care services for patient and family support if needed
3. HCP collaboration
4. appropriate, regular & tailored medications for individual patients for symptom relief and prevention
5. regular assessment and support
6. emergency back-up available 24 hours a day

Question 2

What is the definition of end of life care?

Answer 2

• –> the care experienced by people who have an incurable illness and are approaching death
• covers the care received by people who are likely to die:
• in the next 12 months,
• as well as care in the last days and hours of life,
• and care after death, including
• bereavement support for families and loved ones.

Question 3

What kind of conditons are included in end of life care?

Answer 3

1. advanced, progressive, incurable conditions
2. general frailty and coexisting conditions that mean they are expected to die within 12 months
3. existing conditions if they are at risk of dying from a sudden acute crisis in their condition
4. life-threatening acute conditions caused by sudden catastrophic events.

Question 4

What does end of life care aim to achieve?

Answer 4

• Aims to help people live as well as possible and to die with dignity
• Earlier identification of people leads to earlier planning and better co-ordinated care

Question 5

There are challenges to prognostication in end of life care - there are 3x ways of dying:

• Rapid
• Erratic
• Slow

Give examples of conditions for each.

Answer 5

• Rapid –> Cancer - fine until you can no longer cope/compensate then rapid drop
• Erratic –> Organ failure, (graph dips) - progressive decline with intermittent exacerbations
• Slow e.g. dementia & frailty

Question 6

Below are v. importnant points, what do they represent?

• Maintaining dignity and privacy
• To retain a degree of choice and control
• To have an understanding of what to expect
• Adequate relief from pain and other symptoms
• The opportunity to ensure wishes are respected
  
  • Advance care planning
  • In some cases an Advanced decision to refuse treatment (ADRT)
• To die naturally and not have life prolonged pointlessly

Answer 6

the concept of a “good” death

Question 7

What isssues are important when someone is dying?

Answer 7

• Treatment decisions
• Concerns
• Who to involve
• Where to be

Question 8

What things does a palliative care clinician need to consider for a “good” death?

Answer 8

• Likely disease path and symptoms
• Patient’s priorities
• Information needs
• Realistic options
• Timing of decision making and planning

Question 9

What tools are available to use for palliative care indicators?

Answer 9

1. GSF prognostic indicator guidance
2. SPICT - supportive and palliative care indicators tool

Question 10

One prognostic indicator tool involves:

• looking for 2+ general indicators of deteriorating health

another prognostic indicator involves:

• asking the surprise question,
• general indicators of decline
• and specific clinical indicators related to certain condtions.

Which tool is which?

Answer 10

• asking the surprise question, general indicators of decline and specific clinical indicators related to certain condtions. = GSF prognostic indicator guidance
• looking for 2+ general indicators of deteriorating health = SPICT (supportive and palliative care indicators tool)

Question 11

What is the surpise question in palliative care (GSF prognostic indicator guidance)?

Answer 11

Would you be surprised if this patient were to die in the next few months? weeks? days?

Question 12

What are the general indicators of decline (GSF prognostic indicator guidance)?

Which one is biggest predictor?

Answer 12

1. Decreasing activity
2. co-morbidity! <- regarded as the biggest predictive indicator of M&M
3. general physical decline & inc need for support
4. Advanced disease (unstable and deteriorating syx)
5. decreasing response to Rx, dc reversability
6. choice of no further active treatments
7. >10% weight loss in past 6 months
8. repeated unplanned admissions
9. sentinel event e.g. serious fall, berevement, transfer to nursing home
10. <2.5g/l serum albumin

Question 13

How can you tell someone is “decreasing their acitvity” in general incdicators of decline (GSF prognostic indicator, palliative care)

Answer 13

Barthel score (is of ADLs basically, 100/100 is independence - like a percent of what acitivities they can do)

&

increased dependence in most ADLs

Question 14

Dementia and frailty both have specific clinical indicators of decline.

What are these for dementia?

Answer 14

• unable to walk without assistance,
• incontinence,
• no consistently meaningful conversation,
• unable to do ADLs - Barthel score <3, UTIs,
• stage 3-4 pressure sores,
• recurrent fever,
• reduced oral intake,
• aspiration pneumonia

Question 15

Dementia and frailty both have specific clinical indicators of decline.

What are these for frailty?

Answer 15

• multople co-morbidities with significant impairment in day to day living

Question 16

What do these criteria represent?

• Performance status is poor or deteriorating
  
  • (the person is in bed or a chair for 50% or more of the day);
  • reversibility is limited.
• Dependent on others for most care needs due to physical and/or mental health problems.
• 2+ unplanned hospital admissions in the past 6 months.
• Significant weight loss (5-10%) over the past 3-6 months, and/ or a low body mass index.
• Persistent, troublesome symptoms despite optimal treatment of underlying condition(s).
• Patient asks for supportive and palliative care, or treatment withdrawal.

Answer 16

SPICT or supportive and palliative care indicators tool

• where you look for 2+ or more general indicators of deteriorating health

Question 17

What clinical indicators of one or more advanced conditions maybe seen with neurological disease?

Answer 17

• Progressive deterioration in physical and/or cognitive function despite optimal therapy.
• Speech problems with increasing difficulty communicating and/or progressive swallowing difficulties.
• Recurrent aspiration pneumonia; breathless or respiratory failure.

Question 18

What clinical idicators of one or more advanced conditions would be seen in heart/vascular disease?

Answer 18

• NYHA (new york heart association) Class III/IV heart failure, or extensive, untreatable coronary artery disease with:
  
  • Breathlessness or chest pain at rest or on minimal exertion.
  • Severe, inoperable peripheral vascular disease.

NB: NYH classification:

• Class III - Marked limitation in activity due to symptoms, even during less-than-ordinary activity, e.g. walking short distances (20—100 m). Comfortable only at rest.
• Class IV - Severe limitations. Experiences symptoms even while at rest.

Question 19

What clinical indicators of one of more advanced conditions would be seen with respiratory disease?

Answer 19

• Severe chronic lung disease with:
  
  • Breathlessness at rest or on minimal exertion between exacerbations.
  • Needs long term oxygen therapy.
  • Has needed ventilation for respiratory failure or ventilation is contraindicated.

Question 20

What clinical indicators of one of more advanced conditions would be seen with kidney disease?

Answer 20

• Stage 4 or 5 chronic kidney disease with deteriorating health.
  
  • (eGFR < 30ml/min; w/end stage aka stg 5 =<15)
• Kidney failure complicating other life limiting conditions or treatments.
  
  • e.g. kind of comorbs building up
• Stopping dialysis.

Question 21

What clinical indicators of one or more advanced conditions would be seen with liver disease?

Answer 21

Advanced cirrhosis (aka chronic liver disease) with one or more complications in past year:

• diuretic resistant ascites
• hepatic encephalopathy
• hepatorenal syndrome
• bacterial peritonitis
• recurrent variceal bleeds

Question 22

what clinical indicators of one or more advanced conditions would be seen in someone with cancer?

Answer 22

• Functional ability deteriorating due to progressive metastatic cancer.
• Too frail for oncology treatment or treatment is for symptom control.
  
  • e.g. Performance status is poor or deteriorating (the person is in bed or a chair for 50% or more of the day = PS3, PS4 =bed bound) –> used to see if eligable for oncological treatment

Question 23

What clinical indicators of one or more advanced conditions would be seen with dementia/frailty?

Answer 23

1. Unable to dress, walk or eat without help.
2. Eating and drinking less; swallowing difficulties.
3. Urinary and faecal incontinence.
4. No longer able to communicate using verbal language; little social interaction.
5. Fractured femur; multiple falls.
6. Recurrent febrile episodes or infections;
7. aspiration pneumonia

Question 24

In the management of a dying patient: Information offered to people approaching the end of life, and their families and carers, should include:

• information about treatment and care options, medication and what to expect at each stage of the journey towards the end of life
• who they can contact at any time of day or night to obtain advice, support or services
• practical advice and details of other relevant services such as benefits support
• details of relevant local and national self-help and support groups

what do you do if patients do not want information/these conversations?

Answer 24

• All communication and information provision should be sensitive to the needs and preferences of the person approaching the end of life and their families and carers,
• including those who do not wish to have such conversations at the present time.
• Those who do not wish to have information should have their preferences respected.

Question 25

What is this the definition of? * physical, psychological, social, spiritual, cultural, and where appropriate, environmental considerations. * This may relate to needs and preferences as well as associated treatment, care and support.

Answer 25

**_Holistic_** care/treatment/support

Question 26

What should palliative care be?

Answer 26

* holistic * comprehensive * multidiciplinary * dynamic and timely * encompassing all aspects of EOL care taking into account the pts personal preferances, their families and carers.

Question 27

What topics will end of life assessments involving pts, families and carers be around

Answer 27

1. written and other forms of information 2. face-to-face communication 3. involvement in decision-making 4. control of **physical** symptoms 5. **psychological** support 6. **social** support 7. **spiritual** support 8. **organ and tissue donation.**

Question 28

What is in a personalised care plan?

Answer 28

* **Symptom control (physical and psychological)** * **Social support** * **Spiritual support** * **Support for families/carers** * **Coordination of care** -- important for ensuring timely, safe and effective transfer of appropriate documentation, patient records, equipment and medication * **Advance care planning:** What they DO want to happen VS what they DON'T want to happen, who will speak for them.

Question 29

What symptoms for EOL care are normally needed to Rx?

Answer 29

* pain/SOB * agitation * resp secretions * nausea * STOP constipation * STOP uneccesary medications * artificial nutrition/hydration * ADEQUATE MOUTH HYGEINE (e.g. esp. if not eating/drinking etc)

Question 30

What is haloperidol/levopromazine given for in EOL symptom control?

Answer 30

Nausea

Question 31

What are morphine/diamorphine/oromorph/oxycodone/alfentanyl given for in EOL symptoms control?

Answer 31

Pain/SOB

Question 32

What is midazolam given for in EOL symptom control?

Answer 32

agitation

Question 33

What is glycopirronium given for in symptom control of EOL care?

Answer 33

respiratory secretions

Question 34

What 4 things are ways of advanced care planing?

Answer 34

* Advance statement * advence devision to refuse treatment * life sustaining treatment * lasting power of attorney

Question 35

What is an advanced statement? is it legally binding?

Answer 35

* Advances statement = statements about what the patient would or would not want to happen in the future. * They can be about **medical** treatment * (“I would wish to be ventilated if I stop breathing”) * or about **social** aspects of care. They are **not** **legally binding** but **must** be **taken into account** when **best interest decisions** are made about the person **after capacity has been lost.**

Question 36

What is an advance decision to refuse treatment? is it legally binding?

Answer 36

* Valid and applicable advance decisions to refuse treatment * =\> **legally binding statements** * (usually written documents) * allows patients to **refuse** **specific** **medical treatments** if they **lose capacity** in the future. ## Footnote *Patients can refuse only medical and nursing treatments in advanced - not basic care.* **NB: you can AD refuse Rx but not CHOOSE , advanced statements are taken into best interests decisions but not law enforced)**

Question 37

How is the refusal of life sustaining treatment to be documented?

Answer 37

_Life sustaining treatment_: When the treatment to be **refused** is potentially life sustaining, e.g. CPR the decision must be: * **written**, * & **signed** by the **patient** * in the presence of a **signed witness**

Question 38

What are the 2 types of lasting power of attorney?

Answer 38

1. “property and financial affairs” * and 2. “health and welfare.”

Question 39

How is advanced care planning undertaken? (see picture attached for Gold standards framework - advance care planning summary)

Answer 39

This is a _PROCESS_, not a one-off conversation, and it may include the following: * Values, beliefs and wishes * Preferences about **care**, treatment and information * Anything the patient would **wish to avoid** happening to them * **Communication** and consultation with **others** * Organising **affairs** (e.g. a **Will**, **Lasting Power of Attorney**) * **CPR** decision making

Question 40

See the attached image. This is a care in the last few days of life pathway. What one is this?

Answer 40

this is from the: * Leadership Alliance for the Care of Dying People: 'one chance to get it right' 2014 * (is the new/amendement to the Liverpool Care Pathway) focuses on individualised care planning by guiding prinicples for HCP to identify the 5 key priorities for care: * **_Recognise_** that the patient may die within the next few days or hours * **_Communicate_** this clearly and sensitively * Make decisions in accordance with the person’s needs and wishes, **_involving_** the patient and those close to them * Regularly review interventions and revise decisions as needed * Ensure that the **needs** of those close to the patient are explored, **respected** and **met** as far as possible (**_support_**) * An **_individual plan of care_** including food and drink, symptom control psychological, social and spiritual support, is agreed, coordinated and delivered with compassion

Question 41

What symptoms indicate someone is in their last few days of life (unless sudden or unexpected death)?

Answer 41

1. Profound **weakness** 2. Diminished **intake** of food and fluids 3. Difficulty **swallowing** medications 4. **Drowsiness** or reduced cognition

Question 42

What are common symptoms at EOL?

Answer 42

1. Pain\* 2. Breathlessness\* 3. Restlessness/agitation/confusion\* 4. Nausea/vomiting\* 5. Noisy breathing/respiratory tract secretions\* 6. Urinary incontinence/retention 7. Constipation\* 8. Dry/sore mouth\* 9. Extreme fatigue \* = prescribe * Pain/SOB: morphine/diamorphine/oromorph/oxycodone/alfentanyl * Agitation: midazolam * Respiratory secretions: glycopirronium * Nausea: haloperidol/levomepromazine * ADEQUATE MOUTH HIGIENE * Treat constipation * Stop unnecessary medications * Artificial nutrition/hydration

Question 43

What are good communication tips when discussing EOL care?

Answer 43

* A patient centred approach * Addressing concerns of the patient and those close to them * Emphasising choice and priorities * Openness and honesty * Picking up on cues * Sensitivity * Avoiding jargon * Avoiding euphemisms * Listening is not the same thing as waiting for the opportunity to speak