End of Life Care-----------------------------------------

“A Day in General Practice

Dr Stephen HobsonGP Advisor, GP Partners Australia Palliative Shared Care Program

Overview• Identifying end of life / the terminal patient

• Basics of end of life care

• Withdrawal of non essential treatment

• Common symptoms at the end of life

• Appropriate pharmacological management

• What to consider after death

What is Palliative Care?Palliative Care is an approach to care that

• aims to provides relief from pain and other distressing symptoms

• neither to hasten or postpone death

• focuses on quality of life

• is applicable early in the course of illness, in conjunction with other therapies

• that are intended to prolong life, as well as at the end of life

Identifying End of Life

Palliative Care starts well before the end of life, alongside disease modifying treatment

When does a patient become “terminal”?

The Australia-modified Karnofsky Performance Scale (AKPS)

A measure of the patient’s overall performance status or ability to perform their activities of daily living

Consists of single score between 10 and 100 assigned by a clinician based on observations of a patient’s ability to perform common tasks relating to activity, work and self-care

A score of 100 signifies normal physical abilities with no evidence of disease

Decreasing numbers indicate a reduced performance status

AKPS Score100-Normal; no complaints; no evidence of disease

90-Able to carry on normal activity; minor sign of symptoms of disease

80-Normal activity with effort; some signs or symptoms of disease

70-Cares for self; unable to carry on normal activity or to do active work

60-Able to care for most needs; but requires occasional assistance

50-Considerable assistance and frequent medical care required

40-In bed more than 50% of the time

30- Almost completely bedfast

20- Totally bedfast and requiring extensive nursing care

10-Comatose or barely rousable

0-Dead

The Terminal Phase

AKPS score of 20 or less

But, the terminal phase:

• Is not simply a continuation of what has happened before• Presents new challenges and causes of suffering for patients and their relatives• Plans/goals of care need to be changed to address this suffering

The Terminal Phase

The patient may become;

• weary, weak and sleepy• less interested in getting out of bed or having visitors• less connected with surroundings• confused and may have agitation• less interested in food or fluids• gaunt from progressive weight loss• unable to swallow

The Terminal Phase

• Prognosis remains notoriously difficult• The patients condition can oscillate• Keep monitoring progress every 24 hours• Nurses, carers and family are often much better at assessing than medical

practitioners• Sharing uncertainties is important – dying is an unstable and deteriorating

process

Basics of End of Life Care

• Clarify patient and carer expectation• Sensitively address concerns• Assess home situation• Plan for symptom management – anticipatory prescribing• Discuss choice and control over where death happens• Explore with person and their family whether they have an ACD• Encourage family members to stay with the patient as much as they wish but

with permission to take regular rests

Advanced Care DirectiveLegal document (Consent to Medical Treatment and Palliative Care Act 2014) which allows competent adults to:

• Appoint one or more Substitute Decision Makers (SDMs)

• AND/OR

• Document wishes, instructions and personal values

• Applies at any period when a patient loses decision-making capacity

Advanced Care DirectiveIf an SDM is appointed, they can make lawful decisions as if they are the person – they legally “become the person”

SDMs can be appointed to act individually or together- BUT- health practitioners only have to contact the first SDM that can be reached- it is then up to that SDM to contact any other SDMs

Non binding requests are advisory

Binding refusals must be complied with if relevant to the situation

Advanced Care DirectiveApplies at any period when a patient loses decision-making capacity

Under the Act, decision-making capacity:• is presumed• should be supported • residual capacity respected – can understand some things but not others• fluctuating capacity respected

Advanced Care DirectiveImpaired decision-making capacity- only relates to a particular decision when consent is required

In respect of a particular decision, impaired decision-making capacity means they cannot:

• understand relevant information• retain such information• use information to make the decision- i.e. risks vs benefits• communicate the decision (in any manner)

Site of CareHome, hospital , RACF or hospice?

If decision to keep in RACF or home what needs to be put in place for this to safely happen for everyone?

Consider:Equipment, specialist nursing care, who to contact and when (including SAAS – Extended Care Paramedics)

However: Not everyone who wishes to die at home does so

NutritionProvision of nutrition / hydration can be a difficult topic with families

If already on artificial feeds – cease

Support the dying person to drink if they wish and can do so safely

Mouth care is important – moisten lips, cleaning of teeth/dentures, jumbo swabs

S/C fluids do not alleviate thirst or prolong life, and may worsen troublesome symptoms (respiratory secretions)

Withdrawal of MedicationsConsider withdrawing non-symptom modifying medications even before the terminal phase

Oral medications should be withdrawn by the time a patient can no longer safely swallow

Be aware of possible rebound effects:

• Antidepressants – agitation, headache• Betablockers – rebound tachycardia, palpitations, angina• Nitrates - angina• Anticonvulsants - seizure

Diabetes at End of LifeAcceptance of much higher glucose levels – typically up to 15

Type I – use once daily basal insulin at 50% of pre terminal dose, BSL daily, check for hypoglycaemia if concerned

Type II – cease oral hypoglycaemics, stop monitoring

DefibrillatorsImplantable cardioverter defibrillators (ICDs) should bedisabled - if activated they may cause unnecessary distressand produce no benefit

This is best arranged in discussion with their usual cardiologist ortreating specialist team, ideally as part of planning for the terminalphase

If this cannot be done ahead of time there are ring shaped magnetsthat can be placed over the device to deactivate it - but in a pinchany sufficiently strong magnet can be used

Pacemakers without an ICD function do not need to be deactivated

Common Symptoms at End of Life

• Noisy breathing

• Pain

• Nausea and vomiting

• Agitation/delirium

• Anxiety

• Dyspnoea

Noisy Breathing

Common - inability to clear respiratory secretions

Challenging to family - reassure this does not cause choking or distress

Positioning may help

Medication:Hyoscine butylbromide 20 mg s/c 4/24 prn

Pain

Physical discomfort should not be accepted as an inevitable part of dying

If pain is identified mange it promptly and effectively

Parenteral route (typically s/c line or continuous s/c infusion) is preferred as people get less able to swallow

Titration of analgesia/review every 24 hours in the terminal phase

Pain in the Palliative Patient

Starting oral opiates: 2.5-5mg Morphine syrup 1 hourly prn

Conversion to long acting: Add up prn doses over 24 hours and convert to long acting oral preparation e.g. if they have required 4-5 x 5mg doses of Morphine per day= 20-25mg total/24hrs = 10mg MS Contin bd

Breakthrough doses: ~1/6 of total daily dose 1 hourly prn

Changing opiates: Reduce calculated dose by 30% because of cross tolerance

Unable to SwallowPatient not in pain

• On opioids – convert to s/c - divide oral morphine dose by 3 • Not on opioid – pre-emptive prescribing morphine 2.5 to 5 mg s/c 1/24 prn

Patient in pain

• On opioids – increase background by total prn in last 24 hours and convert to s/c infusion with appropriate change to prn

• Not on opioids – initiate morphine s/c hourly prn, reassess after 24 hrs, if >3 doses start infusion with 10 mg/24 hours

Alternate Opiates

If contraindication to morphine:Fentanyl 25-50 mcg s/c 1/24 prnORHydromorphone 0.5-1 mg s/c 1/24 prn

If changing opiates there is incomplete cross tolerance – reduce background to ~60% total after converting

Equianalgesic Dose to

30mg oral

morphine /

10mg

parenteral morphine

Drug Oral Parentera

l

Conversion Ratio to

Oral Morphine

Morphine

sulfate

30mg 10mg Parenteral morphine is 3 times as

potent as oral morphine

Oxycodone 20mg NA Oral Oxycodone is roughly 1.5

times more potent than oral

morphine

Hydromorphone 7mg 1.5mg Oral hydromorphone is about 4-7

times as potent as oral morphine

Parenteral hydromorphone is 20

times as potent as oral morphine

Fentanyl NA 100-150

mcg

12mcg/h fentanyl patch is

approximately equivalent to 45mg

of oral morphine over 24h

Nausea and VomitingPatient not nauseated

• On antiemetic – if oral consider changing to s/c infusion• No antiemetic – pre-emptive prescribing metoclopramide 10 mg s/c 4/24 prn (max 30mg

in 24h)

Patient is nauseated

• On antiemetic – change to s/c infusion, consider alternative such as haloperidol• No antiemetic – metoclopramide 30mg over 24h via s/c infusion, reassess

Agitation/ Delirium

Consider reversible cases - pain, urinary retention, constipation, medication (or withdrawal)

Calm and quiet environment, familiar people

Medication:Haloperidol 0.5 to 1 mg s/c 2 hourly prn

Have pre-emptive medication ready in case develops

Anxiety/ Terminal Restlessness

Calm and quiet environment, familiar people

Medication:Clonazepam 0.25 to 0.5 mg s/c 12 hourlyORMidazolam 2.5 mg s/c 1/24 prn

Have pre-emptive medication ready in case develops

Dyspnoea

Positioning and fan

Calm environment

Reassurance/support

Medication:• If not on opioid - Morphine 2.5 mg s/c 1/24 prn, reassess after 24 hours• If on opioid – utilise prn for dyspnoea, consider increasing dose by 25%, adjust background

accordingly• If very anxious consider clonazepam

Duties After Death

Make sure there is a clear plan made ahead of time, and communicate this clearly with the family (and document)

Discuss who to call when, especially overnight – NO URGENCY!!

SAAS does not need to be called

A medical practitioner (ideally a treating doctor, but can be a locum) or nurse/paramedic should assess and confirm death (declaration of life extinct). The funeral director can then be called and arrangements made

The treating medical practitioner completes the Death Certificate

Bereavement Follow up with the family

Bereavement support:

• Specialist Palliative Care services• Community psychologists with an interest in bereavement (GP Mental Health Care Plan –

2710 etc)

Key Points

• Identify progression of disease towards/into the terminal phase

• Discuss end of life planning with patients/families ahead of time

• Prepare – equipment, nursing support, medications

• Anticipate symptoms and prescribe medication accordingly

• Make sure that patients/families know who to contact, especially if things go wrong

Resources

Therapeutic guidelines version 4

caresearch.com.au

PalliAGED app

SA Health Clinical guideline for pharmacological management of symptoms for adults in last days of life