No Disclosures. Disclosures. My Patient s 11/27/2017. downloaded from 2

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1 The Journey of Life and Death in the ICU: Ethical Considerations Salam Jarrah, D.O., M.P.H., D.T.M.H. Adjunct Clinical Professor Texas College of Osteopathic Medicine Department of Medical Education Pulmonary and Critical Care Medicine Staff Physician John Peter Smith Hospital Objectives Describe and discuss the ABCDs of dignity conserving care in the ICU Compare curative and palliative approaches to care in critical illness Describe considerations of transitioning goals of care from life sustaining measures to comfort care downloaded from 1

2 Disclosures No Disclosures 39 year old male with a three month history of sudden onset low back pain with activity radiating to the left leg. No inciting trauma He had no prior past medical history, and had no chronic medication use Social history notable for a 4 pack year history of tobacco use He was married and had 3 children, ages 12, 15, and 17 He had no significant travel history or occupational activity He had presented to multiple hospitals and urgent care facilities, and diagnosed with sciatica He was prescribed analgesics and muscle relaxants, and instructed to apply heat to the affected area He had no relief of his symptoms for several months, and noted progressive left lower extremity pain and radiculopathy that was not relieved with recommended therapy, and began to develop weakness of his left lower extremity and left foot drop Two weeks prior to hospital admission, he developed acute onset hemoptysis with table spoon sized hemoptysis He presented to an outside hospital, and thoracic imaging was obtained secondary to hemoptysis downloaded from 2

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4 Thoracic imaging demonstrated innumerable pulmonary nodules and masses, as well as a retroperitoneal mass Retroperitoneal biopsy was completed Histopathology was consistent with metastatic germ cell testicular cancer He was discharged from the outside facility, and instructed to come to JPS hospital to establish care for treatment of malignancy due to lack of funding While awaiting an outpatient Oncology evaluation, he developed worsening left lower extremity pain and foot drop, and developed daily hemoptysis He was admitted to the hospital for inpatient evaluation and management VS: HR bpm, R 18, SpO2 93% on room air downloaded from 4

5 CT abdomen/pelvis with IV contrast notable for innumerable pulmonary nodules and masses in bilateral lung bases, several hypodense lesions in the liver, large heterogeneous mass in the retroperitoneum on the left, ventral epidural masses at L2 and L3 Evaluated by Oncology with plan for inpatient initiation of chemotherapy for widely metastatic testicular cancer MRI lumbar spine with and without IV contrast demonstrated peripherally enhancing lesion in the L2 vertebral body measuring 1.7 cm concerning for possible focal metastasis, peripherally enhancing areas posterior to L2 and L3 vertebral bodies with question of metastatic disease versus epidural abscess, large complex mass in the left paravertebral region spanning L2 L4 levels and measuring 15x8.3 cm likely representing a conglomerate nodal mass Evaluated by Orthopedic Surgery, no surgical intervention recommended as findings were consistent with metastatic disease 12 hours after hospital admission, the patient developed progressive hypoxia requiring high flow supplemental oxygen 60 L/min, FiO hours after hospital presentation, ICU consult was requested for evaluation of progressive hypoxia Transferred to ICU for higher level of care secondary to marginal respiratory status Prior to ICU transfer, extensive discussion with the patient and his wife regarding the patient s overall condition, high risk for progressive decline in respiratory status requiring endotracheal intubation and invasive mechanical ventilation Discussed with the patient that when he was intubated he would be unable to make decisions for himself, and his wife would become his surrogate decision maker Discussed with the patient that in the event that his malignancy was not treatable, he would die due to complications from widely metastatic cancer with multisystem organ involvement The patient confirmed FULL CODE status, and requested all attempts at life sustaining therapy including invasive mechanical ventilation, medications, chemotherapy, and CPR/ACLS Discussed with Oncology, confirmation that chemotherapy would be offered even in the event of critical illness requiring endotracheal intubation and invasive mechanical ventilation for life support therapy downloaded from 5

6 Within 24 hours of transfer to ICU, the patient was intubated secondary to worsening respiratory status, confusion, and hypoxia, and increased work of breathing First cycle of chemotherapy was initiated after intubation, however the patient was unable to complete the chemotherapy infusion secondary to hypotension and hemodynamic instability requiring initiation of pressors Several hours after intubation, the patient had progressive hypoxia despite invasive mechanical ventilation and deep sedation and paralysis on mechanical ventilation to promote patient ventilator synchrony Flexible bronchoscopy was performed emergently, and identified diffuse hemorrhage in bilateral lower airways with source of hemorrhage identified in the right lung from bleeding endobronchial tumor Interventional Radiology guided bronchial artery embolization was performed for control of hemorrhage, with ultimate goal for initiation of chemotherapy when patient was more hemodynamically stable The patient completed 5 days of cycle 1 of chemotherapy while in ICU on invasive mechanical ventilation Palliative Care was consulted on ICU Day 2 Family meetings were held daily to update the patient s family regarding the patient s care and plan of care daily ICU Day 7: The patient developed worsening acute kidney injury and hyperkalemia refractory to medical therapy, requiring initiation of continuous renal replacement therapy (CRRT) Progressive shock multifactorial secondary to severe sepsis from MSSA bacteremia and anemia, requiring multiple pressors and blood transfusions He developed worsening hepatic function with shock liver and acalculous cholecystistis, underwent placement of IR guided biliary drain Worsening hepatic function despite placement of biliary drain Hemodynamic instability complicated by dysrhythmia, patient developed episodes of NSVT and Afib with RVR with worsening shock while on pressor support Hemodynamic instability limited ability to correct volume status on CRRT due to profound shock Persistent hypoxia secondary to ARDS, patient remained on deep sedation and paralytic therapy to promote patient ventilator synchrony and moderate patient s work of breathing Per discussion with Oncology, continued efforts at life sustaining therapy were maintained with the ultimate goal of initiating a second cycle of chemotherapy for salvage therapy and life saving measures downloaded from 6

7 ICU Day 17: Patient developed hemorrhage from IV sites, endotracheal tube, and OG tube with clinical presentation consistent with disseminated intravascular coagulation (DIC) secondary to multisystem organ failure and widely metastatic cancer Persistent shock secondary to sepsis and DIC requiring multiple pressors Worsening hepatic failure No recovery of renal function despite CRRT with anuria No improvement in hypoxic respiratory failure despite full ventilator support with inability to lighten deep sedation or stop paralytic infusion ICU Day 18: Family meeting was held with myself, the patient s wife, and Oncology Discussed with the patient s wife that the patient had multisystem organ failure with worsening clinical status despite aggressive level of care The patient was not a candidate for additional chemotherapy going forward due to critical illness and worsening clinical status and multisystem organ failure In the setting of progression to DIC, concern for high bleeding risk with concern for development of fulminant DIC and life threatening hemorrhage downloaded from 7

8 What can be offered in the ICU setting when all measures have been implemented and offered, and the patient continues to decline despite aggressive measures? The journey of life and death in the ICU within the context of my patient s story The Journey of Life and Death in the ICU: Ethical Considerations The Context of ICU Care downloaded from 8

9 Retrospective analysis of administrative data from 6 states in 1999 Florida, Massachusetts, New Jersey, New York, Virginia, Washington Represent 22% of the U.S. population High quality hospital discharge data including information on ICU use 1 in 5 patients died after ICU level of care 540,000 patients in the US = number of Americans who die of cancer annually 9 out of 10 persons polled stated that they would like to die at home, however > 20% of these patients died within an ICU after receiving the most aggressive and technologically advanced level of care Angus DC, Barnato AE, Linde Zwirble WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med 2004; 32: in 5 patients die after using ICU services Context of ICU Care ICU core competencies need to consider provisions of quality endof life care, in addition to the paradigm of life sustaining care The doubling of persons over the age of 65 by 2030 will require a system wide expansion in ICU care for dying patients OR Rationing, more effective advanced care planning, and augmented capacity to care for dying patients in other settings Angus DC, Barnato AE, Linde Zwirble WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med 2004; 32: downloaded from 9

10 Context of ICU Care ICUs are among the most intimidating locations in the hospital for patients and families by virtue of the reality of critical illness Ventilators, pressors, sedations, central venous catheters, cardiac arrest, continuous monitoring, acute changes in condition Trauma experienced by patients who experience critical illness Trauma experienced by families and loved ones of patients who witness the course of critical illness Considerations of clinical endpoints in ICU include 28 day mortality or 90 day mortality Clinical endpoints are not useful functional endpoints for families and loved ones of patients because the journey of surviving the ICU in an arduous one for patients and families alike Patients survive the ICU only to experience neurocognitive deficits, chronic pain, PTSD, severe debility, chronic ventilator dependence, loss of limb and mobility, malnutrition, anxiety, development of chronic kidney disease and end stage renal disease requiring permanent renal replacement therapy, etc Families witness the journey of survival in the ICU, and witness firsthand the fight for life that their loved ones experience, and the memories of these experiences persist long after a patient s ICU course Considerations of ICU care need to include patient and family centered care as part of a shared decision making algorithm Sevransky JE, Nicholl B, Nicholl JB, Buchman TG. Patient and Family Centered Care: First Steps on a Long Journey. Crit Care Med 2017;45(5): Context of ICU Care Shared Decision Making: Collaborative process that allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient s values, goals, and preferences Define overall goals of care (including decisions regarding limiting or withdrawing life prolonging interventions) and when making major treatment decisions that may be affected by personal values, goals, and preferences. Clinicians should use as their default approach a shared decision making process that includes three main elements: information exchange, deliberation, and making a treatment decision. A wide range of decision making approaches are ethically supportable, including patient or surrogate directed and clinician directed models. Clinicians should tailor the decision making process based on the preferences of the patient or surrogate. Clinicians should be trained in communication skills Recognition of the relationship between patient and family satisfaction, and expectations/perceptions/prognosis can lead to communication processes that synchronize the perceptions of family members with providers and close gaps between reality and expectations Kon AA, Davidson JE, Morrison W, Danis M, White D. Shared Decision Making in ICUs: An American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med 2016; 44(1): Lilly CM, Daly BJ. The Healing Power of Listening in the ICU. N Engl J Med 2007; , downloaded from 10

11 Context of ICU Care ICU is a team approach, involving patients, families, physicians, nurses, respiratory therapy, ancillary staff, social work Discussions regarding patient s prognosis and overall goals of care are heavily weighted by discussion of data and information with patients and their families Circumstances that affect survival and life in the present: number of pressors, ventilator settings, hemodynamic considerations, neurocognitive status Circumstances that affect predictions of survival and cognitive function beyond the ICU: Patient s preferences regarding how they would want to live if they survive the ICU setting How much patients are willing to endure in the journey of survival: trying to see the world through our patient s eyes, and to divine what he would do if he had the cognitive ability to do it Communications with patients and families merits as much time and efforts as decisions regarding medical or procedural therapy, and the art of the family meeting can never be understated Drazen JM. Decisions at the End of Life. N Engl J Med 2003; 349(12): Context of ICU Care VALUE communication system Valuing and appreciating what family members communicate Acknowledging family emotions using reflective summary statements Listening to family members Understanding who the patient is as a person by asking open ended questions and listening carefully to responses Eliciting questions from the family in an effective manner Lilly CM, Daly BJ. The Healing Power of Listening in the ICU. N Engl J Med 2007; , downloaded from 11

12 Context of ICU Care Patients and families need compassion, above all else. The fulfillment of this responsibility in the ICU setting can be emotionally, physically, and spiritually challenging for all members of the ICU team when death is inevitable despite all aggressive measures being implemented Continuing aggressive life sustaining therapies in critical illness for patients at high risk for death or severely impaired functional recovery has been associated with reduced quality of life, and perhaps even quantity of life Prolonged, aggressive care in the ICU is also associated with longlasting pathological bereavement among family members, and often goes contrary to a patient s wishes not to burden their loved ones Variations in terms of timing discussions regarding realistic options in non survivable illness within health care teams Physician reluctance to be the bearer of bad news, and family reluctance to be the recipient of bad news Halpern SD, Becker D, Curtis JR, et al. An Official American Thoracic Society/American Association of Critical Care Nurses/American College of Chest Physicians/Society of Critical Care Medicine Policy Statement: The Choosing Wisely Top 5 List in Critical Care Medicine. Am J Respir Crit Care Med 2014; 190(7): Context of ICU Care Discussions regarding quality of life in the context of critically ill patients evolves into discussions regarding palliative care downloaded from 12

13 The Journey of Life and Death in ICU: Ethical Considerations Palliative Care World Health Organization (WHO) Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. World Health Organization. WHO definition of palliative care ( downloaded from 13

14 WHO Definition of Palliative Care Provides relief from pain and other distressing symptoms; Affirms life and regards dying as a normal process; Intends neither to hasten or postpone death; Integrates the psychological and spiritual aspects of patient care; Offers a support system to help patients live as actively as possible until death; Offers a support system to help the family cope during the patients illness and in their own bereavement; Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; Will enhance quality of life, and may also positively influence the course of illness; Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. World Health Organization. WHO definition of palliative care ( Curative and Palliative Approaches to Care in Critical Illness Lanken PN, Terry PB, Delisser HM, et al. An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses. Am J Respir Crit Care Med 2008; 177: downloaded from 14

15 The Journey of Life and Death in ICU: Ethical Considerations Dignity Conserving Care Concept of dying with dignity in the ICU ABCDs of Dignity Conserving Care Some treatments may be forgone, however care of the patient can still be enhanced as death approaches Fundamental to maintaining dignity is the need to understand a patient s unique perspectives of what gives life meaning in a setting with depersonalizing devices Goal is to care for patients in a manner consistent with their values when they are particularly vulnerable, and unable to speak for themselves Cook D, Rocker G. Dying with Dignity in the Intensive Care Unit. N Engl J Med 2014; 370; Chochinov HM. Dignity and the Essence of Medicine: the A, B, C, and D of Dignity Conserving Care. BMJ 2007; 335: downloaded from 15

16 ABCDs of Dignity Conserving Care Cook D, Rocker G. Dying with Dignity in the Intensive Care Unit. N Engl J Med 2014; 370; Chochinov HM. Dignity and the Essence of Medicine: the A, B, C, and D of Dignity Conserving Care. BMJ 2007; 335: ABCDs of Dignity Conserving Care Transitioning goals of care from life sustaining therapy to comfort care Major Considerations Can modern medicine and technology overcome factors that influence mortality and morbidity? Is withdrawal of life sustaining therapy equivalent to discontinuing care or giving up? Does withdrawal of life sustaining therapy contribute to patient suffering? downloaded from 16

17 Withdrawal of Life Sustaining Measures Cook D, Rocker G. Dying with Dignity in the Intensive Care Unit. N Engl J Med 2014; 370; Transitioning Goals of Care Recognition of factors that cannot alter mortality and morbidity Transitioning goals of care from life sustaining therapy to comfort care Palliative therapy implementation to relieve signs of symptoms of pain, anxiety, suffering, and distress during the dying process Initiation of comfort measures is not equivalent to euthanasia downloaded from 17

18 ICU Day 18: Family meeting was held with myself, the patient s wife, and Oncology Discussed with the patient s wife that the patient had multisystem organ failure with worsening clinical status despite aggressive level of care The patient was not a candidate for additional chemotherapy going forward due to critical illness and worsening clinical status and multisystem organ failure In the setting of progression to DIC, concern for high bleeding risk with concern for development of fulminant DIC and life threatening hemorrhage As the patient was not a candidate for further chemotherapy, continuing life sustaining measures would offer no therapeutic benefit, and would in fact prolong the patient s suffering and ultimate demise from widely metastatic cancer The patient s wife asked me: So you are asking me to give you permission to give up on my husband? Considerations in this case from the perspective of the patient s family: Young patient who was a husband and a father If the patient s wife did not continue to fight for her husband, she felt that she could not face her children and her husband s family because she gave up He had been seen at multiple health care centers for several months prior to this hospitalization The patient had understood the severity of his illness prior to transfer to ICU, and gave full consent for all life sustaining measures to give him a chance of survival and returning home to his family Talking about these issues meant there was no hope, and the patient s wife could not reconcile that there was no hope because she had a strong faith and strong spiritual belief system If all care was discontinued, the patient s wife was concerned that the patient would suffer more because of withdrawal of life support measures due to pain and sensation of inability to breathe If life support measures were discontinued this lack of action meant doing nothing, which was not acceptable as an option downloaded from 18

19 Dialogue with the patient s family What would the patient have wanted, if he was able to understand his condition and the severity of his illness at this point in time? How would the patient want to spend the time that he has left? What would make the most difference for the patient if he knew that he was dying? The patient s wife and children came to the hospital to meet with the health care team to discuss the patient s condition, options for care, and the patient s wishes The patient s family met with the ICU team and the Palliative Care team to discuss the patient s condition and the aforementioned questions The patient s family collectively decided that the patient would not want to be kept alive if there was no hope of meaningful recovery, and would want to be liberated from all measures keeping him alive and contributing to his suffering, and transitioned to full comfort measures only The patient s family felt strongly that all measures that could be offered to save the patient s life had been considered, and that the only measure that would make a meaningful difference to their loved one would be to allow him to die peacefully with dignity and without suffering The patient s family were at bedside when the patient was transitioned to comfort care, and liberated from mechanical ventilation and pressor support The patient passed away peacefully with all his family at bedside holding his hand The patient s wife hugged every member of the ICU team when she left the ICU after her husband passed away, and thanked the team for taking care of her husband downloaded from 19

20 Summary Patients and families need compassion, above all else The fulfillment of this responsibility in the ICU setting can be emotionally, physically, and spiritually challenging for all members of the ICU team when death is inevitable despite all aggressive measures being implemented Continuing aggressive life sustaining therapies in critical illness for patients at high risk for death or severely impaired functional recovery has been associated with reduced quality of life, and perhaps even quantity of life Prolonged, aggressive care in the ICU is also associated with longlasting pathological bereavement among family members, and often goes contrary to a patient s wishes Discussions regarding palliative care in the ICU setting are of utmost importance with regards to compassionate care for patients and families References Angus DC, Barnato AE, Linde Zwirble WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med 2004; 32: Chochinov HM. Dignity and the Essence of Medicine: the A, B, C, and D of Dignity Conserving Care. BMJ 2007; 335: Cook D, Rocker G. Dying with Dignity in the Intensive Care Unit. N Engl J Med 2014; 370; Drazen JM. Decisions at the End of Life. N Engl J Med 2003; 349(12): Halpern SD, Becker D, Curtis JR, et al. An Official American Thoracic Society/American Association of Critical Care Nurses/American College of Chest Physicians/Society of Critical Care Medicine Policy Statement: The Choosing Wisely Top 5 List in Critical Care Medicine. Am J Respir Crit Care Med 2014; 190(7): Kon AA, Davidson JE, Morrison W, Danis M, White D. Shared Decision Making in ICUs: An American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med 2016; 44(1): Lanken PN, Terry PB, Delisser HM, et al. An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses. Am J Respir Crit Care Med 2008; 177: Lilly CM, Daly BJ. The Healing Power of Listening in the ICU. N Engl J Med 2007; , Sevransky JE, Nicholl B, Nicholl JB, Buchman TG. Patient and Family Centered Care: First Steps on a Long Journey. Crit Care Med 2017;45(5): World Health Organization. WHO definition of palliative care ( downloaded from 20