Tim Hiebert - MD MSc FRCPC General Internist/Palliative Care Winnipeg Regional Health Authority

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Alberta Kathryn Sims
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1 Tim Hiebert - MD MSc FRCPC General Internist/Palliative Care Winnipeg Regional Health Authority

2 Conflicts of Interest: None

3 1. Identify key features that suggest the End-of-Life 2. Review of Common End-of-life symptoms 3. Important conversations in the dying days

5 100 Lifetime Risk of Death (%) 50 We are all dying. But who is in their final days 0 Dawn of Time Timeline Today

6 Many pathways to the end-of-life. Commonalities regardless of pathway

7 Organ Failure Cancer Sudden Death Frailty/Dementia (Adapted) BMJ. Apr 30, 2005; 330(7498):

8 When reserves are depleted, change seems sudden and unforeseen. That was fast! Melting ice Day 1 Day 2 Day 3

9 Stroke Cancer Discontinued Dialysis Lung Disease Post-99 Liver Disease HIV/AIDS Functional decline Immobility Diminished LOC Delirium Shock Obtundation Coma Death Heart Disease Neuro- Degenerative Dementia

10 Recurrent hospitalisations Frequent exacerbations Never return to baseline new baseline Gradual loss of mobility Frequent infections Changes noticeable from week to week then day to day

12 J Pain Symptom Manage Jul;38(1):134-44

$appetite, declining PO Worsening Fatigue and weakness Mobilizing with difficulty or assist Difficulties Toileting Refractory$

13 Changes week to week Lack of response to therapies OR therapies not feasible, unavailable, inconsistent with goals Loss of appetite, declining PO Worsening Fatigue and weakness Mobilizing with difficulty or assist Difficulties Toileting Refractory delirium

ulcers Changes is respiratory patterns Clinical signs of

14 Patient now completely immobile Sips only or completely NPO Sleeping more and more Greatly diminished LOC Pressure ulcers Changes is respiratory patterns Clinical signs of early or late shock Respiratory Secretions - Death Rattle Mottling

15 Cheyne-Stokes Rapid, shallow Agonal / Ataxic

MD predictions often over-estimate survival More experienced MD s more accurate Longer MD-patient relationship reduced accuracy Regardless of

16 MD predictions often over-estimate survival More experienced MD s more accurate Longer MD-patient relationship reduced accuracy Regardless of clinical status, can never say: Today is the day Even at PPS of 10%, some patients will persist for days. Christakis and Lamont, BMJ 2000; 320:

18 Dying is supposed to hurt, right?

19 Treat the Underlying Cause Non-Opioids NSAIDS Acetaminophen Opioids Adjuvants Steroids Topical Tx Bisphosphonates Neuropathic Agents NonPharmacologic

20 Opioids Infrequent dosing Toxicity Adequate dosing Analgesia Effect Pain Time

21 Opioid tolerance Mild myoclonus (eg. with sleeping) Severe myoclonus, Seizures Death Rapidly Escalating Opioids Delirium Hyperalgesia Opioids Increased Misinterpreted as Pain Agitation Opioids Increased Misinterpreted

22 Treatment Rotate Opioid MUCH lower doses OR PRN only Morphine Hydromorph Hydromorph Fentanyl Infusion Hydrate Benzo`s Neuromuscular excitation Seizures Antipsychotics for Delirium

23 Sudden Onset Short Duration Examples: Ambulation Dressing changes Pain Crisis Exertional dyspnea Pain Time

24 Rapid Onset Short Acting Fentanyl, Sufentanyl Routes: Sublingual (SL) Intranasal (IN) IV ($5 each) Q15-30 min PRN Usual Doses Drug Fentanyl Sufentanyl Dose (mcg)

25 Opioids are starting point Usual agents take weeks for effect (Gabapentin, TCA s, antiepileptics) Impatience is required Steroids (Dexamethasone) Methadone Ketamine (NMDA antagonist) IV Lidocaine Clonidine/Dexmedetomidine

26 ...the most common severe symptom in the last days of life Davis C.L. The therapeutics of dyspnea Cancer Surveys 1994 Vol.21 p 85-98

27 If possible/reasonable, Treat the Cause: Antibiotics Diuretics Anticoagulation Radiation therapy Steroids effective for obstruction: SVCO, airway lymphangitic carcinomatosis radiation pneumonitis Procedures: Thoracentesis/chest tube Paracentesis

28 Sit Up Open Window Reduced Temperature Fan Reassurance

29 Supplemental O2 Prongs or Mask PRN O2 sat is not relevant Variably effective Opioids!!! Mainstay of Therapy Start low and titrate NOT contraindicated in Hypoxemia CHF COPD PE Benzodiazepines Poor evidence Helpful for anxiety Chlorpromazine 10 mg po q6h

30 Waking Nightmare

31 Most common Neuropsychiatric Disorder Up to 88% of dying patients diagnosis in ~50% Improvement in ~50% Recurrent episodes ~ 75% mortality Mixed and hypoactive most common Bad Prognostic Marker Breitbart et al, JAMA. 2008;300(24): Lawlor, Bruera, Hematol Oncol Clin N Am, 2002, 16, Bruera et al, J Pain Symptom Management 1992:7(4):

32 Delirium = Distress Patients, Families, Health-care team Prevents Supportive Care More difficult assessment of other symptoms Prevents patient from participating in decisions Inappropriate use of Analgesia, Sedation Conflicts within family and with care providers Breitbart et al, Morita et al, J Pain Symptom Manage. 2007;34(6), Namba et al, Palliat Med 2007; 21; 587

33 Patients: Hallucinations Delusions Steroids Caregivers: Hyperactive delirium Poor performance status Brain mets Staff: Delusions Hallucinations Severity Lack of reversible cause Breitbart et al, 2002

34 To Investigate or Not Workup depends on: Patient goals Likelihood of recovery Distress caused by investigations or therapies Will you treat what you find? Treat underlying Cause if possible Minimise Medications Consider opioid rotation

35 Environmental Quiet, private setting Orienting steps Unnecessary distractions Sleep/wake cycle Typical Neuroleptics Haloperidol (Haldol) Nozinan (Methotrimeprazine) Atypical Neuroleptics Olanzapine (tabs or rapid dissolve) Risperidone Quetiapine (Seroquel) Benzodiazepines Not first line

36 The Death Rattle

37 Occurs in ~ 50% Repositioning Antisecretory drugs: Glycopyrrolate Scopolamine Significant side effects: Sedation Urinary retention Dry mouth Worsening delirium Are you treating the patient, the family, the nurse, or your own discomfort? No objective correlation between severity of respiratory secretions and distress Campbell, Yarandi, J Pall Med. 2013;16(10),

38 Loss of PO route Rotate to alternative routes: IV/subcut/sublingual Sudden removal of certain meds may be harmful: Gabapentin Prolonged administration of meds may be harmful Expect Delirium Proactive communication with patient and family Be available Anticipate questions

40 First let s talk about what you should not expect. Should not expect: Uncontrolled pain Worsening breathing symptoms You won t gasp or suffocate going crazy or losing your mind We wont let that happen NEVER say Nothing more I can do Patient hears: You are abandoning me Promise: Never give up on relieving your suffering

41 Give an answer, don t evade. Refer to PPS and/or disease specific prognostic tools Comment on trajectory, speed of changes Ex: "When we see changes from week to week, we estimate a person may have only weeks or a short number of months to live." Keep worst case scenario in mind. May be dying sooner OR waiting longer to die Remember that we often over estimate life-expectancy

42 Describe expected changes: Loss of function and mobility Increasing fatigue and sleepiness Loss of PO intake Possibility of confusion and what we will do about it Reassurance: Vast majority of people will die while asleep Crisis is an unusual event

43 As much as possible, make decisions together with patient, before it`s too late You are seeking their thoughts on what the patient would want, not what they feel is the right thing to do. 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 what to do under these circumstances, what would it say?

44 Eating and drinking play key role in our views of Health Social interactions Caring for each other But: Loss of PO intake natural consequence of illness It is happening because person is dying, not the other way around People with cancer, heart disease, lung disease, etc DO NOT starve to death except in rare circumstances Feeding a person or giving fluids will not make patient better May cause harm or suffering

45 Food Intake Strong evidence base regarding absence of benefit in terminal phase Food and Fluid Intake Fluid Intake Conflicting evidence regarding effect on thirst in terminal phase; cannot be dogmatic in discouraging artificial fluids in all situations

46 Have patience, be gentle Family is looking for something to blame Listen to their concerns In response: Explain for meds individually Remind that patient was changing first then meds added in response Patients who receive effective symptom control may actually live longer and will have better quality of life

47 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

48 When should I call distant family? What do we do now? Do we stay? What about visitors? That noise is scaring me, fix it. (Death rattle) We treat dogs better than this (requests for physician assisted suicide or euthanasia) Patient and family express anger and frustration regarding prior care, late diagnosis etc.

COMMUNICATION ISSUES IN PALLIATIVE CARE

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