THE FINAL DAY S Keeping the Promise of Comfort

THE FINAL DAY(S) Keeping the Promise of Comfort

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

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

Patient Care Challenges in the Final Days • Functional decline- transfers, toileting • Can’t swallow meds- route of administration • Terminal pneumonia » dyspnea » congestion » agitated delirium • Concerns of family and friends

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?

Functional Decline difficult transfers bedridden completely dependent increasingly drowsy comatose

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

The Perception of the “Sudden Change” When reserves are depleted, the change seems sudden and unforeseen. However, the changes had been happening. Melting ice = diminishing reserves Day 1 Day 2 Day 3 Final

Family / Friends Wanting to Intervene With Food and / or Fluids • distinguish between prolonging living and prolonging dying • parenteral fluids not needed for comfort • pushing calories in terminal phase does not improve function or outcome • “We can’t just let him die” Ø “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

Time that death would have occurred without intervention Patient’s Lifetime 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 JUDGM You are seeking their thoughts on what the patient would want, not what they feel is “the right thing to do”.

PHRASING REQUEST: SUBSTITUTED JUDG “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? ”

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

TALKING ABOUT DYING “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

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) SYMPTOM Pain Dyspnea Secretions Restlessness MEDICATION Opioid Scopolamine Haloperidol + Midazolam or Lorazepam Methotrimeprazine

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

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

HOW WELL ARE WE TREATING DYSPNEA IN THE TERMINALLY ILL? Addington-Hall JM, Mac. Donald 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 • severe / very severe dyspnea: 50% ® less than ½ of these were offered effective treatment

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

Examples of Opioid Prescription / Orders In Absence of a Protocol Example 1 Morphine 5 - 20 mg po/SL/pr q 4 h. - Start with 5 mg dose. Titrate ¯ by 5 mg. or - Breakthrough = the current q 4 h dose given q 1 h prn. Example 2 Hydromorphone 0. 5 - 2 mg/hr IV/SQ sage. - Start with 0. 5 mg/hr. Titrate ¯ by 0. 1 - 0. 2 mg/hr or - Breakthrough = the current hourly dose q 30 min prn.

Sedation in Delirium if No SQ Route Available or if Not Necessary Mild: haloperidol 0. 5 – 2 mg po or (injectable) SL bid + q 6 h prn OR risperidone 0. 5 – 1 mg po bid plus q 6 h prn OR methotrimeprazine (elixir or injectable) 6. 25 – 12. 5 mg po/SL q 6 -8 h + q 4 h prn [NB: Taché Pharm. makes 40 mg/ml elixir) Moderate: methotrimeprazine 12. 5 - 25 mg po/SL OR haloperidol 2. 5 - 5 mg po/SL +/lorazepam 1 - 2 mg SL Severe: methotrimeprazine 25 - 50 mg po/SL OR haloperidol 5 mg po/SL AND lorazepam 2 mg SL q 4 h plus q 1 h prn (Also consider chlorpromazine supps 50 - 100 mg pr q 4 h)

Sedation via SQ Route in Delirium Mild: haloperidol 0. 5 - 2 mg SQ bid OR methotrimeprazine 6. 25 – 12. 5 mg SQ 6 - 12 h Moderate: haloperidol 2. 5 - 5 mg OR methotrimeprazine 25 -50 mg + SQ q 4 h plus q 1 h prn midazolam 2. 5 - 5 mg Severe: haloperidol 5 mg OR methotrimeprazine 50 mg + SQ q 4 h plus q 1 h prn midazolam 10 – 20 mg OR: SQ infusion of: methotrimeprazine 6. 25 - 12. 5 mg/hr + midazolam 1. 25 - 5 mg/hr

CONGESTION IN THE FINAL HOURS “Death Rattle” • Positioning • ANTISECRETORY: Scopolamine - 0. 3 - 0. 6 mg SQ q 1 h prn - Transdermal Gel (Taché Pharm. ) 0. 25 mg/0. 1 ml Give 0. 5 mg q 4 h and q 1 h 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 use of opioids doesn't actually bring about or speed up the patient's death?

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

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

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

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