3 Main Features of Approach to Care Perceptive and vigilant regarding changes“Proactive” communication with patient and familyanticipate questions and concernsavailabledon’t present “non-choices” as choicesAggressive pursuit of comfortDon’t be caught off-guard by predictable problems
4 Predictable Challenges in the Final DaysFunctional decline- transfers, toiletingCan’t swallow meds- route of administrationTerminal pneumoniadyspneacongestiondelirium:> 80% At times ++ agitationConcerns of family and friends
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!Isn’t the medicine speeding this up?Too drowsy! Too restless!Confusion… he’s not himself, lost him alreadyWhat will it be like? How will we know?We’ve missed the chance to say goodbye
6 Which Came First.... The Med Changes or the Decline? Steady declineAccelerated deterioration begins, medications changedRapid decline due to illness progression with diminished reserves.Medications questionedor blamed
7 Day 1 Day 2 Day 3 Final The Perception of the “Sudden Change” When reserves are depleted, the change seems sudden and unforeseen.However, the changes had been happening.That was fast!Melting ice = diminishing reservesDay 1Day 2Day 3Final
8 Family / Friends Wanting to Intervene With Food and / or Fluids discuss goalsdistinguish between prolonging living vs. prolonging dyingparenteral fluids generally not needed for comfortpushing calories in terminal phase does not improve function or outcome
9 Consider Concerns About Food And Fluids Separately IntakeFoodFoodandFluidIntakeIntakeFluidConflicting evidence regarding effect on thirst in terminal phase;cannot be dogmatic in discouraging artificial fluids in all situationsStrong evidence base regarding absence of benefit in terminal phase
10 Patient’s Lifetime Extending the final days in terminal illness: Time that death would have occurred without interventionPatient’s LifetimeExtending 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 PHRASING REQUEST: SUBSTITUTED JUDGMENT “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?”
13 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 likely to happen?”
14 First, let’s talk about what you should not expect. pain that can’t be controlled.breathing troubles that can’t be controlled.“going crazy” or “losing your mind”
15 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?
16 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.
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 won’t let that happen.
18 Neuroleptic (haloperidol or methotrimeprazine) +/– Basic Medications in The Final Day(s)SYMPTOMMEDICATIONPainOpioidDyspneaSecretionsScopolamineRestlessnessNeuroleptic (haloperidol or methotrimeprazine) +/–benzodiazepine
19 An uncomfortable awareness of breathing DYSPNEA:An uncomfortable awareness of breathing
20 “...the most common severe symptom in the last days of life” 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 PrevalenceReuben 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.1997Only 11% were noted to have titration of opioids at end of life specifically for dyspnea
23 HOW WELL ARE WE TREATING DYSPNEA IN THE TERMINALLY ILL?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 = Last week of lifesevere / very severe dyspnea: 50%less than ½ of these were offeredeffective treatment
24 Multiple And Diverse Potential Causes Of DyspneaLungparenchyma: tumour, infection, fibrosis (radiation, chemotherapy)pleura (effusion, tumour)lymphangitic carcinomatosisairway obstructionVascular – pulmonary embolism, superior vena cava obstruction, vessel erosion with hemoptysisPericardial – effusion, restriction by tumourCardiac – cardiomyopathy (eg. adriamycin, cyclophosphamide)AnemiaMetabolic – hypokalemia, hyponatremiaNeuromuscular – 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:Non-specific, symptom-orientedDisease-specific
26 Simple Non-Specific Measures In Managing Dyspnea calm reassurancepatient sitting up / semi-reclinedopen windowfan
27 Non-Specific Pharmacologic Interventions In Dyspnea Oxygen - hypoxic and ? non-hypoxicOpioids - complex variety of central effectsChlorpromazine or Methotrimeprazine - some evidence in adult literature; caution in children due to potential for dystonic reactionsBenzodiazepines - literature inconsistent but clinical experience extensive and supportive
28 TREAT THE CAUSE OF DYSPNEA - IF POSSIBLE AND APPROPRIATE Anti-tumor: chemo/radTx, hormone, laserInfectionAnemiaCHFSVCOPleural effusionPulmonary embolismAirway obstruction
29 Opioids in Dyspnea Uncertain mechanism Comfort achieved before resp compromise; rate often unchangedOften patient already on opioids for analgesia; if dyspnea develops it will usually be the symptom that leads the need for titrationDosage should be titrated empirically; may easily reach doses commonly seen in adultsMay need rapid dose escalation in order to keep up with rapidly progressing distress
30 CONGESTION IN THE FINAL HOURS “Death Rattle”PositioningANTISECRETORY: Scopolamine, glycopyrrolateConsider suctioning if secretions are:distressing, proximal, accessiblenot 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 ; 5:
33 Typically, With Excessive Opioid Dosing One Would See:pinpoint pupilsgradual slowing of the respiratory ratebreathing is deep (though may be shallow) and regular
34 COMMON BREATHING PATTERNS IN THE FINAL HOURS Cheyne-StokesRapid, shallow“Agonal” / Ataxic
35 DOCTRINE OF DOUBLE EFFECT Wilkinson J. Oxford Textbook of Palliative Medicine 1993: p 497-8Where 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:The action is good in itself.The intention is solely to produce the good effect (even though the bad effect may be foreseen).The good effect is not achieved through the bad effect.There is sufficient reason to permit the bad effect (the action is undertaken for a proportionately grave reason).
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 31-37The principle of double effect is not confined to end-of-life circumstances…Good effectsBad effectsBurdensSide EffectsBeneficial EffectsBenefits
37 The difference in aggressive opioid use in end-of-life circumstances is that the “bad effect” = DeathThe 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 processA 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
38 DON’T FORGET...For death at home Health Care Directive: no CPRLetters (regarding anticipated home death) to:Funeral HomeOffice of the Chief Medical ExaminerCopy in the homephysician not required to pronounce death in the home, but be available to sign death certificate