1. WRHA Palliative Care Program Dr. M. Harlos, Medical Director L. Embleton, Program Director April 30, 2014

2. http://palliative.info

4. The presenters have no conflicts of interest to disclose

5. Objectives To provide an overview of the services offered by the WRHA Palliative Care program To review considerations for Respiratory Therapists in caring for palliative patients

6. Palliative Care is an approach to care which focuses on comfort and quality of life for those affected by life- limiting/life-threatening illness. Its goal is much more than comfort in dying; palliative care is about living, through meticulous attention to control of pain and other symptoms, supporting emotional, spiritual, and cultural needs, and maximizing functional status.

7. Role of WRHA Palliative Care Program WRHA Palliative Care Program is a clinical program that: – Provides and promotes quality palliative care for patients/families with life limiting/threatening illnesses – Provides support to health care teams providing care to palliative patients in any care setting

8. Role of WRHA Palliative Care Program Two streams of service provided: Consultation Registration

9. Consultative Services available to any patient with a life-limiting/threatening illness, at any time in the illness trajectory, in any care setting for: 1.Symptom management 2.Assistance with planning care 3.Clarifying goals of care provided by inter-professional team members: –Palliative Care Physician –Palliative Care Clinical Nurse Specialist –Psycho-social Support Specialist

10. Consultative Services To access consult service: During business hours, all consults should be directed to Palliative Care Program 204-237-2400 After hours – MD to MD consults available 24 hours a day through St. Boniface Paging 204-237-2053

11. Registration on Program Patients can be “registered” on the Palliative Care Program if they meet program criteria: – Prognosis of less than 6 months (approximately) – No longer receiving aggressive treatment which requires on-going monitoring for and treatment of serious complications – Have chosen a comfort-focused approach including a decision to decline attempted resuscitation

12. Registration on Program Once registered with the program, patients are eligible for: – Case management through Palliative Care Coordinator – Access to Community Palliative Care Nursing 24/7 Palliative Care Nurses have access to Palliative Care Physician – Admission to Palliative Care Units (PCU) and Hospice – if bed available – Enrollment on Provincial Palliative Care Drug Access Program

13. Inpatient Care settings Palliative Care units: – St. Boniface Hospital – 15 beds Tertiary Care Facility – Riverview Health Centre – 30 beds Hospices: – Grace Hospice – 12 beds – Jocelyn House – 4 beds

14. Community Palliative Care Program Approximately 400 patients at any one time Each community team considers patients in their area as their “ward ” – Inclusive of all care settings – home, acute care and long term care – Team meetings are held to discuss patient care needs (rounds) Focus on meeting needs in a proactive way – Opportunity to strengthen networks with other care teams to support patients and families including the opportunity to model “palliative care”

15. Community Teams: Community Nurses CNS MD Coordinator Psychosocial

16. Pediatric Palliative Care Established in 2006 – Services provided by physician and CNS Consultative service –no dedicated beds ~ 80 new patients each year

17. Diagnosis of Life-Limiting Illness Transitioning to Palliative Palliative Consult Service Community Palliative Nursing Case Coordinator Admission Eligibility Medication Coverage comfort-focusedcomfort-focused prognosis “6 mo. or less”prognosis “6 mo. or less” some treatment limitations (DNAR, no TPN, no chemoTx with high adverse effectssome treatment limitations (DNAR, no TPN, no chemoTx with high adverse effects aggressive, often toxic treatment focused on cure or life-prolonging disease modification

18. Considerations For The Respiratory Therapist In Caring For Palliative Patients

19. Initiating and maintaining ventilatory support Setting up and supporting O 2 Educate patient, families, involved health care team Withdrawing ventilatory support Withdrawing O 2 Transport of palliative patients Nebulized meds (including lidocaine) Resp. Therapy Palliative Care Shared Care

20. 1.Role of O 2 therapy in palliative patients 2.Noninvasive ventilation in ALS 3.Role of opioids in palliation of dyspnea 4.Transport of dying patients; role of Health Care Directive, ACP 5.Withdrawal of life-sustaining treatments – ventilatory support (invasive and noninvasive), oxygen Specific Issues

21. not a straightforward issue “hypoxia kills” – a common mantra in medical care should also be mindful that “supplemental O 2 prolongs the natural dying process” the awake hypoxic patient feels less air hunger and does better physiologically with O 2 supplementation the unconscious/comatose patient does not likely experience air hunger what about the awake, dyspneic, non-hypoxic palliative patient? studies of “air vs. O 2 ” used room air by nasal prongs and are therefore not practical – “medical air” not available in clinical practice, and dyspnea is helped by cool air in nasopharynx Role of O 2 In Palliative Patients

22. N = 32 non-dyspneic patients with Palliative Performance Scale ≤ 30% (median survival 9 days or less), at risk of developing dyspnea (CA lung, CHF, COPD, pneumonia) excluded if: mechanically ventilated, on high-flow O 2 by FM; tracheostomy; experiencing respiratory distress at study entry SpO 2, end-tidal CO 2 measured; dyspnea assessed using Respiratory Distress Observation Scale patients were rotated blindly from O 2, medical air, no-flow cannulae no difference in comfort between interventions

23. results suggest that O 2 need not be prescribed to patients who are near death and not exhibiting respiratory distress regardless of oxygen saturation. O 2 can often be withdrawn when the patient makes a transition from terminal illness to imminent death, particularly as consciousness decreases. most patients tolerated a crossover from oxygen to air or no flow, however 3 patients experienced distress that was relieved by a return to oxygen.  An inability to reliably predict which patient will experience distress requires close clinical observation when withdrawing O 2 Campbell et al continued…

24. generally our practice is to focus on comfort, not oximetry -good O 2 sats, patient uncomfortable: intervention needed -poor O 2 sats, patient comfortable: no change needed often nasal prongs are better tolerated than mask, regardless of oximetry if a patient feels benefit with O 2 even though room air oximetry is normal, we would use O 2 if feasible in the unresponsive patient, consider tapering over a few hours as tolerated

25. improved quality of life and survival, though this has not been demonstrated in bulbar onset ALS bulbar patients less tolerant of NIV (mouth leaks, sialorrhea) Noninvasive Ventilation in ALS

28. tendency to gradually increase its use – eventually to 24/7; the implications of this does not seem to be commonly discussed patient may be completely dependent on NIV, and unable to remove mask in event of machine or power failure the very patients who selected NIV rather than tracheostomy often find themselves on “life-support” with NIV, having to decide about withdrawal of ventilatory support conversations around end-of-life issues should be included when discussing any ventilatory support care setting for patients dependent on NIV need to address: -risk management around power / machine failure -ability to address symptoms in context of acute distress -ability to ensure comfort in context of withdrawal Palliative Considerations Regarding NIV

29. Johnson MJ, Abernethy AP, and Currow DC. Gaps in the evidence base of opioids for refractory breathlessness. A future work plan? J Pain Symptom Manage. United States; 2012;43(3):614-24. Opioids And Dyspnea

30. Regarding fear of respiratory depression – higher doses of opioids and benzodiazepines used in the withdrawal of life-sustaining treatment were not associated with a decreased time from withdrawal of life support to death Of 11 studies providing information on ABGs or O 2 sat, only one study reported any significant changes in oxygenation after opioid administration Recommend that: Oral and/or parenteral opioids can provide relief of dyspnea. Opioids should be dosed and titrated for the individual patient with consideration of multiple factors (e.g., renal, hepatic, pulmonary function, and current and past opioid use) for relief of dyspnea. American College Of Chest Physicians Consensus Statement On The Management Of Dyspnea In Patients With Advanced Lung Or Heart Disease - 2010

31. Official American Thoracic Society Statement: Update on the Mechanisms, Assessment, and Management of Dyspnea – 2012 -Opioids have been the most widely studied agent in the treatment of dyspnea. Short-term administration reduces breathlessness in patients with a variety of conditions, including advanced COPD, interstitial lung disease, cancer, and chronic heart failure Canadian Thoracic Society Clinical Practice Guideline 2011: Managing Dyspnea In Patients With Advanced Chronic Obstructive Pulmonary Disease -“We recommend that oral (but not nebulized) opioids be used for the treatment of refractory dyspnea in the individual patient with advanced COPD”

32. Thorax. England; 2014;69(4):393-4. “Failure to properly treat chronic refractory breathlessness with opioids as outlined in specialist clinical guidelines is now substandard medical care and is also a breach of clinicians' ethical and legal duties to the patient” … “considered negligent” In addition to being a breach of professional, ethical and legal duties, failure to treat chronic refractory breathlessness adequately should be viewed as a breach of human rights.

33. Common Concerns About Aggressive Use of Opioids at End-Of-Life How do you know that the aggressive use of opioids for dyspnea 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?”

34. 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

35. may reduce overall oxygen demand “The administration of sedatives (midazolam and morphine) has been associated with decreases in oxygen demand and the attenuation of the cardiopulmonary response associated with increased work of breathing” see also: Endoh H et al; Effects of naloxone and morphine on acute hypoxic survival in mice. Crit Care Med; 1999;27(9):1929-33 -significantly lower oxygen consumption and improved survival in morphine treated rats subjected to acute hypoxic hypoxia

36. risk of patient death during transport a Health Care Directive or Advance Care Plan is an important tool in preventing unwanted/inappropriate resuscitation attempts clear “what-if” plans need to be prepared, with involvement of patient and/or family -e.g. limited bagging but no chest compressions, or allow natural death medications on hand for symptom management Transporting Palliative Patients

37. Health Care Directive document outlining care expectations supported by legislation 16+ yrs, competent can name proxy can be made on any piece of paper helps inform the ACP process Health Care Directive document outlining care expectations supported by legislation 16+ yrs, competent can name proxy can be made on any piece of paper helps inform the ACP process Advance Care Planning Consensus-based process Patient/family/SDM* and Health Care Team Can be done if patient not able to participate −cognitive impairment −children Advance Care Planning Consensus-based process Patient/family/SDM* and Health Care Team Can be done if patient not able to participate −cognitive impairment −children * SDM = Substitute Decision Maker

38. allowing the natural course of illness to unfold, in contrast to euthanasia RT not always included in the decision-making process, yet may still be involved – can be a difficult role to serve in a palliative care setting, we may need RT to help with the machine settings, extubation, perhaps suctioning comfort is paramount – biggest threat to comfort is air hunger preemptive & reactive opioids and sedatives are main pharmacologic interventions no specific predetermined dose – essentially only 3 possible doses: not enough; perfect; too much -the correct dose is the one that is effective, avoids harm if possible, and is proportionate to the need Withdrawal Of Ventilatory Support

39. “…respect and protect the legal rights of the patient, including the right to informed consent and refusal or withdrawal of treatment.”