1. Considerations For Palliative Care In Dementia Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Adult and Pediatric Palliative Care mharlos@wrha.mb.ca Dr. Mike Harlos 24th Annual Manitoba Provincial Palliative Care Conference Sept. 17, 2015

2. http://palliative.info

4. Objectives To review the clinical challenges that arise in the progression of dementia To explore the implications of these predictable clinical challenges with regards to Advance Care Planning To review approaches to symptom management and communication issues in providing palliative care during the final hours or days for patients with dementia

5. Relationships with commercial interests (Grants/Research Support; Speakers Bureau/Honoraria; Consulting Fees) None Commercial Financial Support / In-kind Support None Potential Conflicts of Interest (e.g. influencing content of presentation) None Steps Towards Mitigating Potential BiasNot Applicable Disclosures / Disclaimers: Dr. Mike Harlos

6. Source: CIHR

7. Prevalence of Dementia Types Alzheimer disease most common – 50-80% depending whether “pure” or “mixed” cases are included vascular dementia 20 - 30% frontotemporal dementia 5 - 10% dementia with Lewy bodies 4 - 7.5%

8. Metastatic prostate CA: 3.5 yrs Metastatic breast CA: 3 yrs Metastatic colorectal CA: 2.5 yrs Metastatic prostate CA: 3.5 yrs Metastatic breast CA: 3 yrs Metastatic colorectal CA: 2.5 yrs

9. Challenges/Barriers In LTC Setting Staff Challenges staffing ratios may have rapid increase in care needs near death comfort/experience with palliative meds time needed to support families Staff Challenges staffing ratios may have rapid increase in care needs near death comfort/experience with palliative meds time needed to support families System/Administrative availability of medications policy/procedure support availability of comprehensive interdisciplinary team System/Administrative availability of medications policy/procedure support availability of comprehensive interdisciplinary team MD Challenges comfort with aggressive use of opioids for dyspnea, pain familiarity with current palliative approaches to variety of issues (e.g. alternate medication routes, complex pain, opioids in renal insufficiency, bowel obstruction) availability for contact by staff and family, timely responsiveness, on- site assessment 24/7 time commitment for discussions with patient/family MD Challenges comfort with aggressive use of opioids for dyspnea, pain familiarity with current palliative approaches to variety of issues (e.g. alternate medication routes, complex pain, opioids in renal insufficiency, bowel obstruction) availability for contact by staff and family, timely responsiveness, on- site assessment 24/7 time commitment for discussions with patient/family Patient/Family Issues “treat the treatable” approach may have unrealistic expectations addressing goals of care Patient/Family Issues “treat the treatable” approach may have unrealistic expectations addressing goals of care

10. Some Challenges Are Quite Predictable

11. Predictable Challenges As Death Nears In Progressive Terminal Illness Functional decline – 100% decreasing mobility + poor insight = Falls Risk Compromised oral intake (food, fluids, meds) – pretty much 100% Congestion: reported as high as 92% Delirium: 80% + Families who would be grateful for support and information: must be near 100% When these issues arise at end-of-life, things haven’t “gone wrong”… they have gone as they are inclined to.

12. Role of the Health Care Team 1.Anticipate predictable challenges 2.Communicate with patient/family 3.Formulate a plan for care

13. Role of the Health Care Team 1.Anticipate changes and challenges 2.Communicate with patient/family regarding potential concerns:  What can we expect? What are the options?  Not eating/drinking; sleeping too much  How do we know they are comfortable?  Are medications making things worse?  Would things be different in hospital? 3.Formulate a plan for addressing predictable issues, including:  Health Care Directive / Advance Care Plan, particularly addressing: 1. artificial nutrition and hydration 2. treatment of life-threatening pneumonia at end of life 3. transfer to acute care  Medications by appropriate routes for potential symptoms

14. WRHA ACP LevelsC Comfort Care - Goals of Care and interventions are directed at maximal comfort, symptom control and maintenance of quality of life excluding attempted resuscitation M Medical Care - Goals of Care and interventions are for care and control of the Patient/Resident/Client condition The Consensus is that the Patient/Resident/Client may benefit from, and is accepting of, any appropriate investigations/ interventions that can be offered excluding attempted resuscitation R Resuscitation - Goals of Care and interventions are for care and control of the Patient/Resident/Client condition The Consensus is that the Patient/Resident/Client may benefit from, and is accepting of, any appropriate investigations/ interventions that can be offered including attempted resuscitation

15. ComfortComfort MedicalMedical ResuscitationResuscitation The three ACP levels are not end-points in advance care planning, but starting points for approaching care once a change occurs “It appears that he has developed pneumonia – he may not survive this. I see that you have discussed an approach to care before, and have decided for a comfort-focused level of care…”

16. Displacing the Decision Burden “If he could come to the bedside as healthy as he was a month 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?”

17. Life and Death Decisions? when asked about common end-of-life choices, families may feel as though they are being asked to decide whether their loved one lives or dies It may help to remind them that the underlying illness itself is not survivable – no decision can change that… “ I know that you’re being asked to make some very difficult choices about care, and it must feel that you’re having to make life-and-death decisions. You must remember that this is not a survivable condition, and none of the choices that you make can change that outcome. We know that his life is on a path towards dying… we are asking for guidance to help us choose the smoothest path, and one that reflects an approach consistent with what he would tell us to do.”

18. ●Tube feeding will rarely be appropriate as it does not prevent aspiration, prolong life or improve function ●Continuing careful and adapted oral feeding is probably as safe, maintains food enjoyment and social interaction during meals and will be the most appropriate course in most cases. -This may not meet conventional nutritional requirements ●Patients should not be made ‘nil by mouth’ if they wish to try to eat

20. Feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered; -hand feeding is at least as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. -tube feeding is associated with agitation, greater use of physical and chemical restraints, greater healthcare use due to tube-related complications, and development of new pressure ulcers.

21. Overall Clinical Approach As Death Nears 1.Are there preexisting medical conditions needing attention in the final hours?  e.g. seizure disorder 2.What new symptoms might arise? (typically dyspnea, congestion, agitated delirium – not common for pain to arise as a new and progressive symptom near death), 3.What are the anticipated medication needs?  available drugs, including after hours / weekends  available routes of administration  staff knowledge, skill, comfort and support in administering  family understanding of reasons for use  family and potentially staff misunderstanding about opioid risks

22. A Visual Analogue Scale Developed For Nonverbal Children – Can Customize For Nonverbal Adults

24. SymptomDrug Non-Oral Route(s) Dyspneaopioidsublingual (SL) – small volumes of high concentration; same dose as oral subcutaneous – supportable in most settings; same dose as IV = ½ po dose IV – limited to hospital settings intranasal – fentanyl – lipid soluble opioid; use same dose as IV to start Note: Transdermal not quickly titratable Painopioidsee above Secretionsscopolaminesubcutaneous transdermal (patches; compounded gel) glycopyrrolatesubcutaneous Agitated Delirium neuroleptic (methotrimeprazine; haloperidol) SL– use same dose for all routes subcutaneous (most settings); IV (hospital) lorazepamSL – generally use with neuroleptic

25. Using Opioids/Sedatives In The Final Hours/Days: “Start Low, Go Slow” Fast” If you start cautiously, with a conservative dose that may be ineffective, be prepared to titrate up quickly “prepared” means attentive, proactive, vigilant, available (i.e. don’t assume things are fine if nobody calls you) Reassess early (perhaps later that day even), and consider increasing to a more “usual” dose

26. Determining The Correct Opioid Dose Not Enough Too Much Somewhere in here i.e. the opioids are titrated proportionately to achieve the desired effect

27. Breakthrough / prn Doses usually 10-20% of total daily dose, or = q4h dose the correct dose is the one that works – this may vary for an individual patient, and might be substantially different between patients prn interval should reflect pharmacology – i.e. when is it reasonable to repeat? (enteral 1 hr; subcut 30 min; IV 10- 15 min; transmucosal 10-15 min) if you want to limit the # breakthrough doses due to safety concerns, do so by limiting the # doses over a period, but keep the reasonable interval e.g. Morphine 2.5 mg po q1h prn. Call MD if 3 consecutive doses ineffective. Max 3 doses in 8 hour period

28. Time Opioid Level Stacking Doses

29. Common Concerns About Aggressive Use of Opioids at End-Of-Life How do you know that the aggressive use of opioids doesn't actually bring about or speed up the patient's death? “I gave the last dose of morphine and he died a few minutes later… did the medication cause the death?”

30. 1.Literature: the literature supports that opioids administered in doses proportionate to the degree of distress do not hasten death and may in fact delay death 2.Clinical context: breathing patterns usually seen in progression towards dying (clusters with apnea, irreg. pattern) vs. opioid effects (progressive slowing, regular breathing; pinpoint pupils) 3.Medication history: usually “the last dose” is the same as those given throughout recent hours/days, and was well tolerated

31. ●subjective experience of an uncomfortable awareness of breathing rather than an observation of increased work of breathing ●diverse potential causes - treat reversible causes, if appropriate ●oxygen can help in awake patients ●opioids: o main drug intervention o uncertain mechanism o comfort achieved before resp compromise; rate often unchanged o may need rapid dose escalation in order to keep up with rapidly progressing distress Dyspnea

32. Positioning ANTISECRETORY: −scopolamine 0.3-0.6 mg subcut q2h prn −glycopyrrolate 0.2-0.4 mg subcut q2h prn (less sedating than scopolamine) Consider suctioning if secretions are: −distressing, proximal, accessible −not responding to antisecretory agents Congestion in the Final Hours ("Death Rattle”)

33. 1. Clinical factors:  no therapeutic options available – e.g. end-stage liver failure  rapid time course 2. Directive from patient/proxy that no further investigations be done and that interventions focus strictly on comfort 3. Limitations of care setting – e.g. remaining at home to die What Makes An End-of-Life Delirium Irreversible? Irreversible Agitated Delirium At End-of-Life should be considered a medical emergency due to profound impact on quality of life, dignity, family experience and memories of the death

34.  most commonly use a neuroleptic +/- a benzodiazepine: 1.neuroleptic such as:  methotrimeprazine (Nozinan®) 2.5 – 5 mg SL/subcut q4h plus q2h prn (may need increase to 25 mg or more) OR  haloperidol (though not very sedating) 0.5 – 2 mg SL/subcut q4h plus q1h prn (may need increase to 5 mg) 2.benzodiazepine – typically lorazepam 1-2 mg SL q4h plus q2h prn; may use midazolam if setting supports it  family must be aware that the patient is not likely to be both awake and calm/settled again  preemptively address potential concerns (family and staff) that the sedation might hasten dying – e.g.: “ Sometimes people may be concerned that the medications are speeding things up, and contributing to the dying process… is that something that you had wondered about? Would it be helpful to talk about that? ”

35. Palliative Sedation (Sedation for Palliative Purposes) Sedation for Palliative Purposes is the planned and proportionate use of sedation to reduce consciousness in an imminently dying patient, with the goal to relieve suffering that is intolerable to the patient and refractory to interventions acceptable to the patient

36. Palliative Sedation (Sedation for Palliative Purposes) Sedation for Palliative Purposes is the planned and proportionate use of sedation to reduce consciousness in an imminently dying patient, with the goal to relieve suffering that is intolerable to the patient and refractory to interventions acceptable to the patient The intention of the intervention is to sedate, rather than sedation being the undesired yet predictable side effect of medications such as opioids or antinauseants

37. Palliative Sedation (Sedation for Palliative Purposes) Sedation for Palliative Purposes is the planned and proportionate use of sedation to reduce consciousness in an imminently dying patient, with the goal to relieve suffering that is intolerable to the patient and refractory to interventions acceptable to the patient Medications are titrated to the lowest effective dose. Respiratory rate and pattern are watched to prevent medication-related resp. depression

38. Palliative Sedation (Sedation for Palliative Purposes) Sedation for Palliative Purposes is the planned and proportionate use of sedation to reduce consciousness in an imminently dying patient, with the goal to relieve suffering that is intolerable to the patient and refractory to interventions acceptable to the patient Expected natural death within 1-2 weeks from the underlying life-limiting condition, to avoid hastening the death through dehydration caused by prolonged sedation

39. Palliative Sedation (Sedation for Palliative Purposes) Sedation for Palliative Purposes is the planned and proportionate use of sedation to reduce consciousness in an imminently dying patient, with the goal to relieve suffering that is intolerable to the patient and refractory to interventions acceptable to the patient The person experiencing the suffering is in the best position to judge “intolerable”

40. Palliative Sedation (Sedation for Palliative Purposes) Sedation for Palliative Purposes is the planned and proportionate use of sedation to reduce consciousness in an imminently dying patient, with the goal to relieve suffering that is intolerable to the patient and refractory to interventions acceptable to the patient Proposed interventions may seem minor or routine to the health care team, but unduly burdensome to the patient

41. The literature indicates that proportionate palliative sedation does not hasten the dying process when death is imminent due to the underlying condition 1-4 1.Maltoni, M., et al. (2009). Palliative sedation therapy does not hasten death: results from a prospective multicenter study. Annals of Oncology, 20(7), 1163-1169. 2.Claessens P, Menten J, Schotsmans P, Broeckaert B.; Palliative sedation: a review of the research literature.; J Pain Symptom Manage. 2008 Sep; 36(3):310-33 3.Morita T, Tsunoda J, Inoue S, et al. Effects of high dose opioids on survival in terminally ill cancer patients. J Pain Symptom Manage 2001;21:282–9 4.4.Sykes N, Thorns A. The use of opioids and sedatives at the end of life. Lancet Oncol 2003;4:312–8.

42. Helping Families At The Bedside physical changes – skin colour; breathing patterns individual time alone with patient can they hear us? how do you know they’re comfortable? missed the death

43. WRHA Symptom Management Guidelines For Long Term Care