THE FINAL DAY(S)THE FINAL DAY(S)

Keeping the Promise Keeping the Promise

of Comfortof Comfort

Post-99Ischemic

Encephalopathy

Discontinued Dialysis

Cancer

Stroke

Neuro-Degenerative

End-StageLung Disease

• Bedridden• Can’t clear secretions

Pneumonia

Dyspnea, Congestion,Agitated Delirium

Main Features of Approach to CareMain Features of Approach to Care

• Perceptive and vigilant regarding changes

• “Proactive” communication with patient and family» anticipate questions and concerns» available» don’t present “non-choices” as choices

• Aggressive pursuit of comfort

• Don’t be caught off-guard by predictable problems

• Functional decline- transfers, toileting

• Can’t swallow meds- route of administration

• Terminal pneumonia» dyspnea» congestion» agitated delirium

• Concerns of family and friends

Patient Care Challenges in the Final DaysPatient Care Challenges in the Final Days

Concerns of Patients, Family, and FriendsConcerns of Patients, Family, and Friends

• How could this be happening so fast?

• What about food & fluids?

• Things were fine until that medicine was started!

• Isn’t the medicine speeding this up?

• Too drowsy!

• Too restless!

• We’ve missed the chance to say goodbye

• What will it be like? How will we know?

difficult transfers

bedridden

completely dependent

increasingly drowsy

comatose

Functional DeclineFunctional Decline

Steady decline Accelerated deterioration begins,medications changed

Rapid decline due to illness progression with diminished reserves.

Medications questionedor blamed

Which Came First....The Med Changes or the Decline?

Day 1Day 1 FinalFinalDay 3Day 3Day 2Day 2

The Perception of the “Sudden Change”

Melting ice = diminishing reserves

When reserves are depleted, the change seems sudden and unforeseen.However, the changes had been happening.

Family / Friends Wanting to InterveneFamily / Friends Wanting to InterveneWith Food and / or FluidsWith Food and / or Fluids

• distinguish between prolonging living and prolonging dyingdistinguish between prolonging living and prolonging dying• parenteral fluids not needed for comfortparenteral fluids not needed for comfort• pushing calories in terminal phase does not improvepushing calories in terminal phase does not improve function or outcomefunction or outcome• “ “We can’t just let him die”We can’t just let him die” ““Not letting him die” implies that you can “make him Not letting him die” implies that you can “make him

live”, which is not the case. The living vs. dying live”, which is not the case. The living vs. dying outcome is dictated by the disease, not by what you or outcome is dictated by the disease, not by what you or the family decides to do.the family decides to do.

Patient’s LifetimePatient’s Lifetime

Time that death would have occurred without intervention

Extending the final days in terminal illness:Prolonging life or prolonging the dying phase?

Consider the rationale of trying to prolong life by adding time to the period of dying

OBTAINING SUBSTITUTED JUDGMENTOBTAINING SUBSTITUTED JUDGMENT

You are seeking their thoughts on You are seeking their thoughts on

what the patient would want, not what what the patient would want, not what

they feel is “the right thing to do”.they feel is “the right thing to do”.

““If he could come to the bedside as healthy as If he could come to the bedside as healthy as he was a year ago, and look at the situation for he was a year ago, and look at the situation for himself now, what would he tell us to do?”himself now, what would he tell us to do?”

OrOr

““If you had in your pocket a note from him telling If you had in your pocket a note from him telling you that to do under these circumstances, what you that to do under these circumstances, what would it say?”would it say?”

PHRASING REQUEST: SUBSTITUTED JUDGMENTPHRASING REQUEST: SUBSTITUTED JUDGMENT

Usual response is for comfort Usual response is for comfort

care only; emphasize then that care only; emphasize then that

we have no right to do otherwise.we have no right to do otherwise.

“Many people think about what they might experience as things change, and they become closer to dying.

Have you thought about this regarding yourself?

Do you want me to talk about what changes are likely to happen?”

TALKING ABOUT DYING

First, let’s talk about what you should not expect.

You should not expect:– pain that can’t be controlled.– breathing troubles that can’t be controlled.– “going crazy” or “losing your mind”

If any of those problems come up, I will make sure that you’re comfortable and calm, even if it means that with the medications that we use you’ll be sleeping most of the time, or possibly all of the time.

Do you understand that?Is that approach OK with you?

You’ll find that your energy will be less, as you’ve likely noticed in the last while.

You’ll want to spend more of the day resting, and there will be a point where you’ll be resting (sleeping) most or all of the day.

Gradually your body systems will shut down, and at the end your heart will stop while you are sleeping.

No dramatic crisis of pain, breathing, agitation, or confusion will occur -

we won’t let that happen.

Basic Medications in The Final Day(s)Basic Medications in The Final Day(s)

SYMPTOM MEDICATION

Pain Opioid

Dyspnea Opioid

Secretions Scopolamine

Restlessness Haloperidol + Midazolam or Lorazepam Methotrimeprazine

National Hospice StudyNational Hospice StudyDyspnea DataDyspnea Data

• n = 1764 n = 1764

• prospectiveprospective

• Dyspnea incidence: Dyspnea incidence: 70 %70 % during last 6 wks. of life during last 6 wks. of life

Reuben DB, Mor V. Dyspnea in terminally ill cancer patients. Reuben DB, Mor V. Dyspnea in terminally ill cancer patients. Chest 1986;89(2):234-6.Chest 1986;89(2):234-6.

25

35

45

55

65

75

42 21 7

# Days Prior to DeathPre

vale

nce

of

Dys

pn

ea (

%)

National Hospice StudyNational Hospice Study Dyspnea PrevalenceDyspnea Prevalence

Reuben DB, Mor V. Dyspnea in terminally ill cancer patients. Chest 1986;89(2):234-6.

Addington-Hall JM, MacDonald LD, Anderson HR, Freeling P. Addington-Hall JM, MacDonald LD, Anderson HR, Freeling P. Dying from cancer: the views of bereaved family and friends about the experience Dying from cancer: the views of bereaved family and friends about the experience of terminally ill patients.of terminally ill patients. Palliative Medicine 1991 5:207-214Palliative Medicine 1991 5:207-214..

• n = 80 Last week of lifen = 80 Last week of life• severe / very severe dyspnea: 50%severe / very severe dyspnea: 50%

less than ½ of these were offered effective treatment

HOW WELL ARE WE TREATING DYSPNEA IN THE TERMINALLY ILL?

1. Opioid - pain, dyspnea

2. Antisecretory - congestion

3. Sedative - restlessness, confusion

Basic Medications in The Final Day(s)Basic Medications in The Final Day(s)

Examples of Opioid Prescription / OrdersIn Absence of a Protocol

Examples of Opioid Prescription / OrdersIn Absence of a Protocol

Example 1Morphine 5 - 20 mg po/SL/pr q4h.- Start with 5 mg dose. Titrate or by 5 mg .- Breakthrough = the current q4h dose given q1h prn.

Example 2Hydromorphone 0.5 - 2 mg/hr IV/SQ sage.

- Start with 0.5 mg/hr. Titrate or by 0.1- 0.2 mg/hr

- Breakthrough = the current hourly dose q30 min prn.

Sedation in Delirium if No SQ Route Available or if Not Necessary

Sedation in Delirium if No SQ Route Available or if Not Necessary

Moderate: methotrimeprazine 12.5 - 25 mg po/SL OR haloperidol 2.5 - 5 mg po/SL

+ / - lorazepam 1 - 2 mg SL

(Also consider chlorpromazine supps 50 - 100 mg pr q4h)

q4h plus q1h prn

Mild: haloperidol 0.5 – 2 mg po or (injectable) SL bid + q6h prnOR risperidone 0.5 – 1 mg po bid plus q6h prnOR methotrimeprazine (elixir or injectable) 6.25 – 12.5 mg po/SL q6-8h + q4h prn [NB:Taché Pharm. makes 40mg/ml elixir)

q4h plus q1h prn

Severe: methotrimeprazine 25 - 50 mg po/SL OR haloperidol 5 mg po/SL AND lorazepam 2 mg SL

Sedation via SQ Route in DeliriumSedation via SQ Route in Delirium

Moderate: haloperidol 2.5 - 5 mg OR methotrimeprazine 25-50mg +

midazolam 2.5 - 5 mg

SQ q4h plus q1h prn

OR: SQ infusion of:

methotrimeprazine 6.25 - 12.5 mg/hr + midazolam 1.25 - 5 mg/hr

SQ q4h plus q1h prn

Severe: haloperidol 5 mg OR methotrimeprazine 50mg +

midazolam 10 – 20 mg

Mild: haloperidol 0.5 - 2 mg SQ bid ORmethotrimeprazine 6.25 – 12.5 mg SQ 6 - 12h

CONGESTION IN THE FINAL HOURS“Death Rattle”

CONGESTION IN THE FINAL HOURS“Death Rattle”

• Positioning

• ANTISECRETORY: Scopolamine 0.3 - 0.6 mg SQ q1h prn Transdermal Gel (Taché Pharm.) 0.25 mg/0.1ml Give 0.5 mg q4h and q1h prn. Try 2-3 Transderm-V® Patches

• Consider suctioning if secretions are: distressing, proximal, accessible not responding to antisecretory agents

A COMMON CONCERN ABOUT AGGRESSIVE USE OF OPIOIDS IN THE FINAL HOURS

How do you know that the aggressive How do you know that the aggressive

use of opioids doesn't actually bring use of opioids doesn't actually bring

about or speed up the patient's death?about or speed up the patient's death?

0

10

20

30

40

50

60

70

80

90

100

Dyspnea Pain Resp. Rate (breaths/min)

O2 Sat (%) pCO2

Pre-Morphine

Post-Morphine

SUBCUTANEOUS MORPHINE INTERMINAL CANCER

Bruera et al. J Pain Symptom Manage. 1990; 5:341-344

Typically, with excessive opioid dosing one Typically, with excessive opioid dosing one would see:would see:

• pinpoint pupilspinpoint pupils• gradual slowing of the respiratory rategradual slowing of the respiratory rate• breathing is deep (though may be shallow) and breathing is deep (though may be shallow) and regularregular

COMMON BREATHING PATTERNS IN THE FINAL HOURS

COMMON BREATHING PATTERNS IN THE FINAL HOURS

Cheyne-Stokes

Rapid, shallow

“Agonal” / Ataxic

DON’T FORGET...For death at homeDON’T FORGET...For death at home

• Advance Directive: no CPR

• Letters (regarding anticipated home death) to:» Funeral Home» Office of the Chief Medical Examiner» Copy in the home

• physician not required to pronounce death in the home, but be available to sign death certificate