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Keeping the Promise of Comfort The Final Days. Post-99 Ischemic Encephalopathy Discontinued Dialysis Cancer Stroke Neuro- Degenerative End-Stage Lung.

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Presentation on theme: "Keeping the Promise of Comfort The Final Days. Post-99 Ischemic Encephalopathy Discontinued Dialysis Cancer Stroke Neuro- Degenerative End-Stage Lung."— Presentation transcript:

1 Keeping the Promise of Comfort The Final Days

2 Post-99 Ischemic Encephalopathy Discontinued Dialysis Cancer Stroke Neuro- Degenerative End-Stage Lung Disease Bedridden Cant clear secretions Pneumonia Dyspnea, Congestion, Agitated Delirium

3 Main Features of Approach to Care Perceptive and vigilant regarding changes Proactive communication with patient and family » anticipate questions and concerns » available » dont present non-choices as choices Aggressive pursuit of comfort Dont be caught off-guard by predictable problems

4 Functional decline- transfers, toileting Cant swallow meds- route of administration Terminal pneumonia dyspnea congestion delirium:> 80% At times ++ agitation Concerns of family and friends Predictable Challenges in the Final Days

5 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! Isnt the medicine speeding this up? Too drowsy! Too restless! Confusion… hes not himself, lost him already What will it be like? How will we know? Weve missed the chance to say goodbye

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

7 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. That was fast!

8 Family / Friends Wanting to Intervene With Food and / or Fluids discuss goals distinguish between prolonging living vs. prolonging dying parenteral fluids generally not needed for comfort pushing calories in terminal phase does not improve function or outcome

9 Food and Fluid Intake Fluid Intake Food Consider Concerns About Food And Fluids Separately Strong evidence base regarding absence of benefit in terminal phase Conflicting evidence regarding effect on thirst in terminal phase; cannot be dogmatic in discouraging artificial fluids in all situations

10 Patients Lifetime Time that death would have occurred without intervention Extending the final days in terminal illness: Prolonging life or prolonging the dying phase? Consider carefully the rationale of trying to prolong life by adding time to the period of dying

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

12 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? PHRASING REQUEST: SUBSTITUTED JUDGMENT

13 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

14 First, lets talk about what you should not expect. You should not expect: pain that cant be controlled. breathing troubles that cant be controlled. going crazy or losing your mind

15 If any of those problems come up, I will make sure that youre comfortable and calm, even if it means that with the medications that we use youll be sleeping most of the time, or possibly all of the time. Do you understand that? Is that approach OK with you?

16 Youll find that your energy will be less, as youve likely noticed in the last while. Youll want to spend more of the day resting, and there will be a point where youll be resting (sleeping) most or all of the day.

17 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 wont let that happen.

18 Basic Medications in The Final Day(s) SYMPTOMMEDICATION PainOpioid DyspneaOpioid SecretionsScopolamine Restlessness Neuroleptic (haloperidol or methotrimeprazine) +/– benzodiazepine

19 DYSPNEA: An uncomfortable awareness of breathing

20 DYSPNEA:...the most common severe symptom in the last days of life Davis C.L. The therapeutics of dyspnoea Cancer Surveys 1994 Vol.21 p

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

22 End-of-Life Care in Cystic Fibrosis: Treatments Received in Last 12 Hours of Life Robinson,WM et al, Pediatrics 100(2) Aug.1997 Only 11% were noted to have titration of opioids at end of life specifically for dyspnea

23 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 : n = 80 Last week of life severe / very severe dyspnea: 50% less than ½ of these were offered effective treatment HOW WELL ARE WE TREATING DYSPNEA IN THE TERMINALLY ILL?

24 Multiple And Diverse Potential Causes Of Dyspnea Lung parenchyma: tumour, infection, fibrosis (radiation, chemotherapy) pleura (effusion, tumour) lymphangitic carcinomatosis airway obstruction Vascular – pulmonary embolism, superior vena cava obstruction, vessel erosion with hemoptysis Pericardial – effusion, restriction by tumour Cardiac – cardiomyopathy (eg. adriamycin, cyclophosphamide) Anemia Metabolic – hypokalemia, hyponatremia Neuromuscular – neurodegenerative disease, cachexia, paraneoplastic myesthenic syndromes (Eaton-Lambert) Intra-abdominal – ascites, organomegaly, tumour mass

25 Approach To The Dyspneic Palliative Patient Two basic intervention types: 1.Non-specific, symptom-oriented 2.Disease-specific

26 Simple Non-Specific Measures In Managing Dyspnea calm reassurance patient sitting up / semi-reclined open window fan

27 Non-Specific Pharmacologic Interventions In Dyspnea Oxygen - hypoxic and ? non-hypoxic Opioids - complex variety of central effects Chlorpromazine or Methotrimeprazine - some evidence in adult literature; caution in children due to potential for dystonic reactions Benzodiazepines - literature inconsistent but clinical experience extensive and supportive

28 Anti-tumor: chemo/radTx, hormone, laser Infection Anemia CHF SVCO Pleural effusion Pulmonary embolism Airway obstruction TREAT THE CAUSE OF DYSPNEA - IF POSSIBLE AND APPROPRIATE

29 Opioids in Dyspnea Uncertain mechanism Comfort achieved before resp compromise; rate often unchanged Often patient already on opioids for analgesia; if dyspnea develops it will usually be the symptom that leads the need for titration Dosage should be titrated empirically; may easily reach doses commonly seen in adults May need rapid dose escalation in order to keep up with rapidly progressing distress

30 CONGESTION IN THE FINAL HOURS Death Rattle Positioning ANTISECRETORY: Scopolamine, glycopyrrolate Consider suctioning if secretions are: distressing, proximal, accessible not responding to antisecretory agents

31 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?

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

33 pinpoint pupils gradual slowing of the respiratory rate breathing is deep (though may be shallow) and regular Typically, With Excessive Opioid Dosing One Would See:

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

35 DOCTRINE OF DOUBLE EFFECT 1.The action is good in itself. 2.The intention is solely to produce the good effect (even though the bad effect may be foreseen). 3.The good effect is not achieved through the bad effect. 4.There is sufficient reason to permit the bad effect (the action is undertaken for a proportionately grave reason). Wilkinson J. Oxford Textbook of Palliative Medicine 1993: p Where an action, intended to have a good effect, can achieve this effect only at the risk of producing a harmful/bad effect, then this action is ethically permissible providing:

36 Mount B., Flanders E.M.; Morphine Drips, Terminal Sedation, and Slow Euthanasia: Definitions and Fact, Not Anecdotes J Pall Care 12:4 1996; p The principle of double effect is not confined to end-of-life circumstances… Burdens Side Effects Beneficial Effects Benefits Good effectsBad effects

37 The doctrine of double effect exists to support those health care providers who may otherwise withhold opioids in the dying out of fear that the opioid may hasten the dying process A problem with the emphasis on double effect is that there in an implication that this is a common scenario…. in day-to-day palliative care it is extremely rare to need to even consider its implications The difference in aggressive opioid use in end-of-life circumstances is that the bad effect = Death

38 DONT FORGET...For death at home Health Care 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

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