1. THE FINAL DAY(S) Keeping the Promise of Comfort

3. Post-99 Ischemic Encephalopathy Discontinued Dialysis Cancer Stroke Neuro- Degenerative End-Stage Lung Disease Bedridden Can’t clear secretions Pneumonia Dyspnea, Congestion, Agitated Delirium

4. Main 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

5. 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 Days

6. Concerns 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?

7. difficult transfers bedridden completely dependent increasingly drowsy comatose Functional Decline

8. Steady declineAccelerated deterioration begins, medications changed Rapid decline due to illness progression with diminished reserves. Medications questioned or blamed Which Came First.... The Med Changes or the Decline?

9. Day 1 Final Day 3 Day 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.

10. Family / Friends Wanting to Intervene With Food and / or Fluids distinguish between prolonging living and prolonging dying distinguish between prolonging living and prolonging dying parenteral fluids not needed for comfort parenteral fluids not needed for comfort pushing calories in terminal phase does not improve pushing calories in terminal phase does not improve function or outcome function 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 live”, which is not the case. The living vs. dying outcome is dictated by the disease, not by what you or the family decides to do.

11. Patient’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

12. OBTAINING SUBSTITUTED JUDGMENT You are seeking their thoughts on what the patient would want, not what they feel is “the right thing to do”.

14. “If he could come to the bedside as healthy as he was a year ago, and look at the situation for himself now, what would he tell us to do?” Or “If you had in your pocket a note from him telling you that to do under these circumstances, what would it say?” PHRASING REQUEST: SUBSTITUTED JUDGMENT

15. Usual response is for comfort care only; emphasize then that we have no right to do otherwise.

16. “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

17. 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”

18. 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?

19. 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.

20. 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.

21. Basic Medications in The Final Day(s) SYMPTOM MEDICATION Pain Opioid Dyspnea Opioid Secretions Scopolamine Restlessness Haloperidol + Midazolam or Lorazepam Methotrimeprazine

22. National Hospice Study Dyspnea Data n = 1764 n = 1764 prospective prospective Dyspnea incidence: 70 % during last 6 wks. of life Dyspnea incidence: 70 % during last 6 wks. of life Reuben DB, Mor V. Dyspnea in terminally ill cancer patients. Chest 1986;89(2):234-6.

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

24. Addington-Hall JM, MacDonald LD, Anderson HR, Freeling P. Dying from cancer: the views of bereaved family and friends about the experience of terminally ill patients. Palliative Medicine 1991 5:207-214. n = 80 Last week of life n = 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?

25. 1. Opioid - pain, dyspnea 2. Antisecretory - congestion 3. Sedative - restlessness, confusion Basic Medications in The Final Day(s)

26. Examples of Opioid Prescription / Orders In Absence of a Protocol Examples of Opioid Prescription / Orders In Absence of a Protocol Example 1 Morphine 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 2 Hydromorphone 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.

27. 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 prn OR risperidone 0.5 – 1 mg po bid plus q6h prn OR 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

28. Sedation 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 OR methotrimeprazine 6.25 – 12.5 mg SQ 6 - 12h

29. 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

30. A COMMON CONCERN ABOUT AGGRESSIVE USE OF OPIOIDS IN THE FINAL HOURS How do you know that the aggressive use of opioids doesn't actually bring about or speed up the patient's death?

31. SUBCUTANEOUS MORPHINE IN TERMINAL CANCER Bruera et al. J Pain Symptom Manage. 1990; 5:341-344

32. Typically, with excessive opioid dosing one would see: pinpoint pupils pinpoint pupils gradual slowing of the respiratory rate gradual slowing of the respiratory rate breathing is deep (though may be shallow) and regular breathing is deep (though may be shallow) and regular

33. COMMON BREATHING PATTERNS IN THE FINAL HOURS Cheyne-Stokes Rapid, shallow “Agonal” / Ataxic

34. DON’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