Considerations For Palliative Care In Dementia Dec. 3, 2014 Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Adult and Pediatric Palliative Care Dr. Mike Harlos

http://palliative.info

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 4

The presenter has no conflicts of interest to disclose 5

Source: CIHR

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%

Challenges/Barriers In LTC Setting Staff Challenges staffing ratios increasing patient needs as death nears – may be rapid training/comfort with palliative meds difficult conversations with families 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 System/Administrative availability of medications policy/procedure support overall resources to support comprehensive end-of-life care Patient/Family Issues “treat the treatable” approach may have unrealistic expectations addressing goals of care

Role of the Health Care Team Anticipate changes and challenges 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? Prepare a plan for addressing predictable issues, including: Health Care Directive / Advance Care Plan, particularly addressing: artificial nutrition and hydration? treatment of life-threatening pneumonia at end of life transfer to acute care Medications by appropriate routes for potential symptoms

WRHA ACP Levels C 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

Resuscitation Medical Comfort The three ACP levels are simply starting points for conversations about goals of care when a change occurs Comfort Medical Resuscitation 12

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?” Family and other substitute decision makers can find it very burdensome to be asked what they would like done for their loved one. By re-phrasing such questions such that the family is asked how the patient would guide care if able to do so, the burden of such decisions is redirected back to the patient; the family is acting as a messenger of the patient’s wishes. Often families will indicate that the patient would want comfort focused care only. This approach to off-loading the family of the direct responsibility for difficult health care choices can be very helpful. 13

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.” Many of the choices presented to families in the context of end-of-life circumstances can result in them feeling as though they are deciding whether or not there loved one lives or dies. It can be helpful to reaffirm that the underlying condition is not survivable, and that none of the choices that they make can change that… they are being asked for input that will help make sure that the care provided is consistent with how their loved one would have guided it, while ensuring that comfort is addressed. Such scenarios can sometimes be described as the illness being a play whose script has been written and which cannot be changed… we are the stage hands whose role is to ensure that it unfolds with as much comfort and dignity for the patient as possible. 14

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

Recommendations: 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.

AGS Position Statement Recommendations ctd: Efforts to enhance oral feeding by altering the environment and creating individual-centered approaches to feeding should be part of usual care for older adults with advanced dementia Tube feeding is a medical therapy that an individual’s surrogate decision-maker can decline or accept in accordance with advance directives, previously stated wishes, or what it is thought the individual would want It is the responsibility of all members of the healthcare team caring for residents in long-term care settings to understand any previously expressed wishes of the individual (through review of advance directives and with surrogate caregivers) regarding tube feeding and incorporate these wishes into the care plan Institutions such as hospitals, nursing homes, and other care settings should promote choice, endorse shared and informed decision-making, and honor individuals' preferences regarding tube feeding. They should not impose obligations or exert pressure on individuals, or providers to institute tube feeding

Overall Clinical Approach As Death Nears Are there preexisting medical conditions needing attention in the final hours? e.g. seizure disorder What new symptoms might arise (typically dyspnea, congestion, agitated delirium – not common for pain to arise as a new and progressive symptom near death), 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

A Visual Analogue Scale Developed For Nonverbal Children – May Be Used In Nonverbal Adults

Symptom Prevalence In Final Days Dyspnea: 80% + Congestion: reported as high as 92% Delirium: 80% + compromised oral intake – pretty much 100% 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.

Management of Symptoms Drug Non-Oral Route(s) Dyspnea opioid sublingual (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 Pain see above Secretions scopolamine subcutaneous transdermal (patches; compounded gel) glycopyrrolate Agitated Delirium neuroleptic (methotrimeprazine; haloperidol) SL– use same dose for all routes subcutaneous (most settings); IV (hospital) lorazepam SL – generally use with neuroleptic

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

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

Breakthrough / prn Doses breakthrough doses are usually 10-20% of total daily dose, or equal to the 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 for breakthroughs 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

Stacking Doses Opioid Level Time

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?” 29

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 Clinical context: breathing patterns usually seen in progression towards dying (clusters with apnea, irreg. pattern) vs. opioid effects (progressive slowing, regular breathing; pinpoint pupils) Medication history: usually “the last dose” is the same as those given throughout recent hours/days, and was well tolerated 30

Medications Needed Opioid: pain, dyspnea Antisecretory: congestion Sedative (neuroleptic +/- benzodiazepine): agitated delirium Plus whatever condition-specific medications are needed (e.g. anticonvulsants)

Dyspnea 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: main drug intervention uncertain mechanism comfort achieved before resp compromise; rate often unchanged may need rapid dose escalation in order to keep up with rapidly progressing distress

Congestion in the Final Hours ("Death Rattle”) 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

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 What Makes An End-of-Life Delirium Irreversible? Clinical factors: no therapeutic options available – e.g.. end-stage liver failure rapid time course Directive from patient/proxy that no further investigations be done and that interventions focus strictly on comfort Limitations of care setting – e.g. remaining at home to die

family must be aware that the patient is not likely to be awake and calm/settled again preemptively address potential concerns (family and staff) that the sedation is speeding up or contributing to the dying… perhaps more so when continuous infusions are used This concern may not be overtly expressed, however it is important enough to strongly consider preemptive discussions “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

The literature indicates that proportionate palliative sedation does not hasten the dying process when death is imminent due to the underlying condition1,2,3 1. 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 2. 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 3. Sykes N, Thorns A. The use of opioids and sedatives at the end of life. Lancet Oncol 2003;4:312–8. 36

Palliative Sedation vs. Euthanasia Overall Goal Of The Intervention Decrease suffering Immediate Intent of the intervention To Sedate To Kill Process Administration of sedating drug doses, titrated to effect Administration of a lethal drug dose Immediate Outcome Decreased level of consciousness Death Cause of Death Underlying Condition (if guidelines/ standard of care followed) The intervention 37

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

WRHA Symptom Management Guidelines For Long Term Care

For Pain Or Dyspnea: Resident on opioids already? YES On PRN only: add scheduled q4h short-acting opioids If on LA oral opioids, switch to equivalent dose scheduled short-acting opioids. Increase frequency of scheduled short-acting opioids – Max q4h Increase opioid dose by a factor of 20-100% depending on clinical context NO Morphine 2.5-5mg PO/SL q4h & q1h PRN or Morphine 1.25mg-2.5mg subcut q4h & q1h PRN or Hydromorphone 0.5mg-1mg PO/SL q4h & q1h PRN or Hydromorphone 0.25-0.5mg subcut q4h & q1h PRN (In renal insufficiency, consider hydromorphone rather than morphine)