The Syndrome of Pre-Test Imminent Death: Recognition & Management Robert M. Taylor, MD Medical Director, Center for Palliative Care Associate Professor of Neurology Associate Professor of Clinical Medicine The Ohio State University Medical Center Objectives Pre-Test At the end of the session, the participants will be • able to: � Describe the key features of the syndrome of • What percentage of Americans die? imminent death � Discuss the importance of recognizing the syndrome of imminent death in order to provide optimal care for patients & their families � Explain to families the rationale for providing or withholding certain treatments for imminently dying patients 1
Pre-Test An Exercise in Imagining • You have lived a long & fulfilling life • What percentage of Americans die? • You accomplished everything you ever hoped for, personally & professionally • What percentage of your patients will die? • Your family is well & prosperous • You are at peace with yourself & the world *Thanks to V. S. Periyakoil, JPM 11(5): 694; 2008 An Exercise in Imagining • You have lived a long & fulfilling life • You accomplished everything you ever hoped for, personally & professionally • Your family is well & prosperous • You are at peace with yourself & the world • Imagine how you would want to die *Thanks to V. S. Periyakoil, JPM 11(5): 694; 2008 2
Randy Pausch interview Did your fantasy with Diane Sawyer - death include ABC, April 2008 • Dying while being coded? “Someone’s going to push my family off a cliff pretty soon and I won’t be there to • Dying in the ICU on a vent? catch them - and that breaks my heart. • Dying in the hospital? But I have some time to sew some nets to • Dying in a nursing home? cushion the fall and that seems like the best and highest use of my time. • Dying in your own home? So I can curl up in a ball and cry … or I can • Dying with your family around you? get to work on the nets.” Two deaths - one extreme “When I am dying, I am quite sure that the central issues for me will not be whether I am put on a ventilator, • 65 year old man, stage IV lung CA whether CPR is attempted when my • In ICU on ventilator & CVVHD heart stops, or whether I receive artificial feeding. . . Rather, my central � Full code, on pressors & triple ATB concerns will be how to face death, • Family distress & dissension & unrealistic how to bring my life to a close, and expectations how best to help my family go on • Dies in cardiac arrest while being coded without me.” - John Hardwig, Philosopher (HCR) 3
Two deaths - the other Paradigm Shift extreme • Recognizing imminent death requires � Redefining the goals of care • 42 year old man, stage IV melanoma • Assure patient comfort • At home, hospice for 2 months, DNR • Support the family • Death recognized as imminent � Changing the way you think about the patient & family • In sunroom, family & friends around � Changing the way you talk to patients & • Minister at bedside, prays over him families • Dies quietly & peacefully as prayer ends � Changing the management of the patient � Increasing your focus on the family Negative consequences of What’s the problem? failure to diagnose dying • Difficulty recognizing a patient is dying • Patient & family unaware of imminent death • Fear of being wrong • Conflicting messages from different doctors • Reluctance to acknowledge patient is dying • Loss of trust • Failure to understand benefit of recognition • Inappropriate tests, treatment, resuscitation of imminent death • Patient dies with uncontrolled symptoms • Failure to understand harms of not • Death distressing and undignified recognizing imminent death • Patient and family distressed & dissatisfied • Wanting to “Do Everything” 4
Syndrome of Why conceptualize Imminent Death as a syndrome? Imminent Death EPERC Fast Fact #3 • “Syndrome” is a useful concept in medicine • Early stage � A group of signs and symptoms that together are characteristic or indicative of a specific � Bed bound disease or other disorder (MSN Encarta) � Loss of interest/ability to eat/drink • Examples of other syndromes: � Congestive Heart Failure � Increased time sleeping &/or delirium � Acute Renal Failure • Middle stage � Delirium � Obtundation � Chronic Pain Syndrome � “Death rattle” - pooled secretions Syndrome of Why conceptualize Imminent Imminent Death Death as a syndrome? EPERC Fast Fact #3 • Imminent Death is best conceptualized as a syndrome that should be treated in a • Late stage standardized way � Coma • Dying can be normal & natural � Fever - often due to aspiration • “Normalize” the dying process � Altered respiratory pattern - apnea, • Bad management of the dying process, hyperpnea, irregular when foreseeable, is bad medical care � Mottled extremities • There is such a thing as a Good Death 5
Syndrome of Syndrome of Imminent Death Imminent Death EPERC Fast Fact #3 EPERC Fast Fact #3 • Treatment • Time course to traverse stages can range � Confirm primary goals from less than 24 hours to as long as 14 • Assure patient comfort days or more • Support family • Explain to family that patient is dying � Recommend stopping non-comfort measures � Treat symptoms as they arise � Discuss with health care team also • Secretions, delirium, dyspnea, pain, others • Write in chart: “Patient is dying” � Provide excellent mouth & skin care � Not: “Prognosis is poor” etc. � Provide daily counseling & support to family Syndrome of Resuscitation Imminent Death • Outcomes of in-hospital arrest EPERC Fast Fact #3 � About 20-30% survive to leave hospital � Outcomes in specific populations are • Address common family concerns: much lower: advanced CA, sepsis, renal � Is he/she in pain? How do we know? failure � Are we starving him/her to death? � Television sends a different message � What should we expect? How much • Diem et al (NEJM 334: 1578; 1996) time? watched ER, Chicago Hope, Rescue � Should I/we stay by the bedside? 911 (1994-5 season) � Can he/she hear what we are saying? • CPR occurred 60 times in 97 shows � What do we do after death? • 67% survived to hospital discharge 6
Resuscitation in cancer patients Discussing Resuscitation Ewer et al, Cancer 92(7): 1905; 2001 Cardiac Arrest and resuscitation • “Unfortunately, your disease is terminal n=244 and will soon cause your death. When that Anticipated arrest Sudden arrest Died happens, your heart or breathing will stop. n=171 (70%) n=73 (30%) n= 57 Attempts to resuscitate you will almost certainly fail. I recommend that, at that Return of circulation Died Return of circulation n=22 n=149 n=16 time, we focus on assuring your comfort and allow you to die peacefully & naturally. Hospital discharge Discharged from Hospital n=0 n=16 Do you agree?” Resuscitation is NOT appropriate Fluids & Nutrition for dying patients • Patients who are dying tend to stop eating & drinking - this is natural • Emphasize that the patient is dying � Lose their appetites & become less alert • Emphasize cardiac arrest is the mechanism � Lose the capacity to swallow of death, not cause of death • Fluids & nutrition do not provide benefit • Say “Attempt Resuscitation” • More likely to be harmful • Emphasize outcomes, negative effects � Especially with renal failure • Emphasize benefits of comfort care • Dehydration contributes to comfort 7
Level of Treating delirium consciousness • Delirium is common and normal • Becoming less alert is part of the normal � Explain to family that this is normal dying process � Rare to discover reversible cause � Occasional “lucid intervals” occur � Limited efforts may be appropriate • Reassure families that it is not “the • Use neuroleptics to treat delirium medicine” that is making the patient � Sublingual haloperidol usually effective drowsy or comatose • Benzodiazepines for sedation w/caution • Encourage families to continue to talk to the patient � Usually in addition to neuroleptics Palliative sedation Treating pain & dyspnea • Do NOT automatically start a morphine drip - rarely necessary for comfort • Palliative sedation (PS) consists of sedating a dying patient to the point of unconsciousness to • Use opioids for pain or dyspnea relieve one or more symptoms that are intractable and unrelieved despite aggressive symptom- � PRN initially - titrate to comfort specific treatments � ATC or drip if previously required or if • Typically, artificial hydration and nutrition are using frequent PRN doses withheld, as they no longer offer any benefit to the patient and may cause adverse effects • Use anitcholinergics for secretions • ALL available in sublingual forms 8
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