End of Life Care

1. End of Life Care Principles and Practice MODULE 5 “Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.” Isaac Asimov

2. Relevance? • 100% of our patients will die (at some stage) • Most people in Victoria die in acute hospitals • Caring for the dying is something we all do, regardless of specialty • ‘Dying well’ is the goal of this phase of care • We all need the knowledge, skills and compassion to achieve this goal for our patients • As important as knowing how to manage acute pulmonary oedema - affects patient but also family who take this memory with them

3. "How we care for the dying must surely be an indicator of how we care for all our sick and vulnerable patients. Care of the dying is urgent care; with only one opportunity to get it right to create a potential lasting memory for relatives and carers.“ Professor Mike Richards Chair: EOLC Strategy Adv. Board

4. What we need to know • How to recognise the dying patient • What is a ‘good death’? • What is the process of dying like? • What are the symptoms of dying? • What are the medical responsibilities in the terminal phase? • How do I get help?

5. Recognising the terminal phase • Doctors consistently overestimate prognosis • Some clues: • Increasingly weak and lethargic • Less able to get out of bed • Less interested in the things going on around him/her • May become confused • Recognition is important: • allow timely discussions with patient and family • establish appropriate goals of care • ultimately, to ensure a good death (and good care) The SUPPORT Study, 1995; Christakis & Lamont, 2000

6. Communication in the terminal phase - do it EARLY • Capability for complex communication decreases markedly as a patient approaches death • But, in the SUPPORT study, 46% of NFR orders are written in the last 2 days of life and 53% of physicians did not know their patients preferred resuscitation to be withheld • Sulmasy et al. (1998) found one of third of surrogates could not accurately predict their terminally ill relatives’ resuscitation preferences • Morita et al. 2003; The SUPPORT Principal Investigators 1995; Sulmasey et al. 1998

7. What is a ‘good death’? • Perception varies depending on your perspective and experience • In those who have a terminal illness: • I want certain people to be here with me • Iwant to be physically able to do things • Iwant to feel at peace • I want to be free from pain • I want the last three days of my life to be like any other days. National Hospice Study, 1986

8. The ‘good death’ • Heyland et al. (2000) found the following (in order) were the most important aspects of care for patient with a terminal illness: • Trust in their doctor • Not having the dying process unduly prolonged • Having honest and open communication with their doctor Heyland et al. 2000

9. Dying trajectories • A way of answering “what will happen?” • Allow practical planning for “a good death” • Get the conversation started …. • Clarify goals of care and ensure appropriate and timely provision of good palliative care • Ideally, empowering for the patient and caregiver, allaying fears and concerns • Be aware the trajectories are a conceptual framework only • Have limits, for the specific patient

10. Trajectory 1 Murray et al. 2005

11. Trajectory 2 Murray et al. 2005

12. Trajectory 3 Murray et al. 2005

13. Recognition of dying… • Ellershaw and Ward suggest that the presence of at least 2 of the following may indicate the patient is entering the last few days of life i.e. ‘imminently dying’ • Bed bound • Only taking sips of fluid • Semi - comatosed • No longer able to take tablets Ellershaw & Ward 2005

14. What is the process of dying? The last hours-days • Several clinical signs have been identified, but there is little evidence of their reliability • Blood pressure will begin to fall • Respirations become shallower, slower and more variable in amplitude (often Cheyne-Stokes pattern) • Respirations with mandibular movements • Accumulation of respiratory secretions • Usually conscious state deteriorates • Become peripherally shut down, cool and cyanosed • Symptoms (apart from drowsiness, fatigue, confusion) tend to improve Plonk & Arnold 2005; Furst & Doyle 2005

15. What are the symptoms of dying? • “Young men fear death, old men fear dying” Hippocrates • Many patients are very fearful of unrelieved physical suffering as they die • Reassurance in the evidence, but also in our professional diligence, careful assessment and active management during this phase

16. The symptoms … • For in-patients, during the last 3 days of life: • 80% severe fatigue • 50% severe dyspnea • 40% severe pain • Other studies identify other symptoms as particular distressing for some patients, such as: • Anorexia, nausea/vomiting, incontinence, dry mouth, pressure sores • Delirium - worthy of special mention • hyperactive, hypoactive or mixed • 28-83% (very common) Plonk & Arnold 2005; Casarett & Inouye 2001; SUPPORT 1995; Furst & Doyle 2005

17. Agitated Delirium • Very common • Hugely distressing to patient and their family • In the last days-week of life, invasive diagnostic investigations are less likely to be appropriate

18. Agitated delirium - management strategies • Look for potential causes (as appropriate): hypoxia, hypoglycaemia, sepsis, drugs, hypercalcaemia, cerebral metastases, etc. • Consider: • Opioid rotation • Saline hypodermoclysis • Educate family/visitors • Ensure a quiet, calm environment • Antipsychotic first line (e.g. haloperidol) • If this is ineffective, may require the addition of a sedative (e.g. benzodiazepine)

19. Accumulation of respiratory tract secretions • Very common • Gurgling respirations, due to: • Declining gag reflex • Reduced reflexic clearing • Management • Explanation and reassurance • Position change • Discontinue parenteral fluids • Anti- muscarinics e.g. hyoscine, glycopyrolate • AVOID suctioning (ineffective, uncomfortable, may stimulate secretion production)

20. Medical responsibilities during the terminal phase • First challenge - diagnosis • Continual active management • We must continue to see our dying patients • Rationalise current medications, review routes of administration • Consider medications that may be needed in the terminal phase • Consider and document the need for further observations/investigations/bloods tests • Advice and support to family • Clear communication with other staff

21. Medication Review • The goal of care is comfort, and this should guide all decision making • The drugs remaining on the drug chart should be directly contributing to the goal of comfort • Continue, but reconsider route e.g. • Analgesics, antiemetics, sedatives, anxiolytics, anticonvulsants • Consider ceasing e.g. • HRT, antiarrythmics, antidepressants • Stop e.g. • Hypoglycaemics, antibiotics, anticoagulants, antihypertensives, vitamin/other supplements, aspirin, thyroid medication

22. Essential medications • Review regular essential medications • Dose, timing, route and breakthroughs • Ensure appropriate prn’s • Something for pain/dyspnea • E.g. morphine 2.5-5mg oral / subcut prn • Hyoscine hydrobromide 0.4mg subcut prn for accumulated respiratory secretions • Something for nausea • E.g. metoclopramide 10-20mg oral / subcut QID • Something for confusion / agitation • E.g. haloperidol 0.5-1mg oral / subcut QID and midazolam 2.5-5mg subcut prn • Something for seizures (if appropriate) • E.g. clonazepam 0.5-1mg subcut prn • Something for a catastrophic event (if appropriate)

23. Syringe drivers ≠ EOLC • Pharmacology at the end of life should be individualised to the patient and their symptoms • No place for ‘triple M’ therapy • Syringe drivers VERY USEFUL, but need to be used properly and when indicated • No more than 3 drugs • Drugs need to be compatible • Prescribed as a given dose over 24 hours, diluted with water or normal saline (depending on the drug).

24. More about routes of administration • Some may be able to take oral medications right up to death • Ongoing review and planning, with alternatives available in prn’s • Other options: • Subcutaneous • Intravenous (if already established) • Rectal • Avoid IM

25. Food and fluids in the Terminal Phase • Anorexia and cachexia are part of the dying process • There is no evidence that nutritional support (parenteral or enteral) improves morbidity or mortality in terminally ill patients • While the evidence for hydration is less clear, the majority suggests that it is unlikely to beneficial in the actively dying patient • Assess for the individual • Provide good mouth care Plonk & Arnold 2005; Cassaret & Caplan 2005

26. Pathways for care at the end of life • ‘Prototype’ : The Liverpool Care Pathway • An evidence based framework for the delivery of appropriate care for dying patients and their relatives. • Pathways for a variety of settings, including acute hospital. • Particularly hopes to “empower generic staff” in the delivery of end of life care to the majority.

27. When do I need help? • You are uncertain about the goals of care or the decision making is not clear • Your patient is continuing to suffer physically or psychologically • You are uncertain about appropriate medications, or their delivery • The patient and or family needs support you and your team cannot provide • You would appreciate support

28. How do I get Help? • Your registrar and/or consultant • The hospital consultancy palliative care service • Specialist palliative care nurse (in hours) • Registrar (24 hours) • For phone advice or patient referral

29. After death • Certification of death • Completion of the death certificate (if appropriate) • If appropriate, seek consent for post mortem examination • Notification of team and also outside caregivers (e.g. LMO) • Team review of the care given, are there any lessons to be learned?

30. VIDEO: A carer’s perspective on EOLC

31. Red Flags in EOLC • Agitated delirium • Inappropriate route of administration • Burdensome (e.g. IM) • May not achieve adequate absorption • Unrelieved suffering • Inadequate documentation and communication • May lead to unnecessary intervention (also sends unclear message to patient and family) • Pacemakers (document on death certificate) • Implantable Defibrillators (need to be turned off) • Asbestos-related deaths (reportable)

32. Myths in EOLC • All dying patients need a syringe driver • All dying patients need morphine, maxalon and midazolam • Ceasing observations is ceasing care • Dying patients don’t need regular review

33. “ There are times when you want your doctor to have lots of letters after their name to show how clever they are. There are other times when you want your doctor to be your friend as well as your doctor. This is the loneliest time I have ever known in my life - a time when all I want is a friend, particularly if he is also my doctor. Please stay with me for just a few minutes more. You don’t need to talk unless you want to. Just be there.” Furst and Doyle 2005

34. References • Casarett JK, Caplan A Appropriate use of artificial nutrition and hydration: fundamental principles and recommendationsNew England Journal of Medicine 2005;353(24):2607-2612 • Casarett DJ, Inouye SK Diagnosis and management of delirium near the end of lifeAnnals of Internal Medicine 2001;135:32-40 • Christakis NA, Lamont EB Extent and determinants of error in doctors’ prognoses in terminally ill patients: a prospective cohort studyBritish Medical Journal 2000;320:469-73 • Ellershaw J & Ward C Care of the dying patient: the last hours to days of lifeBMJ 2003;325:30-34 • Furst CJ, Doyle D The Terminal Phase IN Oxford Textbook of Palliative Medicine 3rd Edition Edited by Doyle D, Hanks G, Cherny N and Calman K 2005:1117-1134 • Heyland DK, Lavery JV, Tranmer JE, Shortt SE, Taylor SJ Dying in Canada: is it an institutionalised, technologically supported experience?Journal Palliative Care 2000:16(Suppl):S10-16 • Plonk WM, Arnold RM Terminal care: the last weeks of lifeJournal of Palliative Medicine 2006;8(5):1042-1054 • Miyashita M, Morita T, Sato K, Hirai K, Shima Y, Uchitomi Y Good Death Inventory: A measure for evaluating good death from the bereaved family member’s perspectiveJournal of Pain and Symptom Management 2008;35(5);486-498

35. References • National Hospice StudyJournal Chronic Disease 1986;39(1):1-62 • Morita T, Tei Y, Inoue S Impaired communication capacity and agitated delirium in the final week of terminally ill cancer patients: prevalence and identification of a research focusJournal of Pain and Symptom Management 2003;26(3):827-34 • Murray SA, Kendall M, Boyd K, Sheikh A Illness trajectories and palliative careBritish Medical Journal 2005;330:1007-1011 • Sanjo M, Miyashita M, Morita T, Hirai K, Kawa M, Akechi T, Uchitomi Y Preferences regarding end-of-life cancer care and associations with good-death concepts: a population based survey in JapanAnnals of Oncology 2007;18:1539-1547 • Shanawani H, Wenrich MD, Tonelli MR, Curtis JR Meeting physicians’ responsibilities in providing end of life careChest 2008;133:775-786 • Sulmasy DP, Terry PB, Weisman CS, Miller DJ, Stallings RY, Vettese MA, Haller KB The accuracy of substituted judgements in patients with terminal diagnosesAnnals Internal Medicine 1998;128(8):621-9 • The SUPPORT Principal Investigators A controlled trial to improve care for seriously ill hospitalised patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT) JAMA 1995;274(20):1591-8. • Von Gunten, CF Teaching the family what to expect when the patient is dying #149Journal Palliative Medicine 2008;11(3):503-5