Medical Manuscript
Sudden Advanced Illness: An Emerging Concept Among Palliative Care and Surgical Critical Care Physicians
American Journal of Hospice & Palliative Medicine® 1-6 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114565108 ajhpm.sagepub.com
Michael D. Barnett, MD, MS1,2,3, Beverly R. Williams, PhD1,2,4, and Rodney O. Tucker, MD, MMM1,2
Abstract Background: End-of-life discussions in critically-ill patients with acute surgical conditions may be rushed and occur earlier during hospitalization. This study explores the concept of sudden advanced illness (SAI) and its relevance to patients requiring Palliative and Surgical Critical Care. Methods: Semi-structured interviews were completed with 16 physicians, querying each about (1) definitional components, (2) illustrative cases, and (3) comfort with SAI. Analysis was done by grounded theory. Results: SAI was characterized as unforeseen, emerging abruptly and producing devastating injury, often in healthy, younger patients. There is (1) prognostic uncertainty, (2) loss of capacity, and (3) unprepared surrogate decision-making. Cases are emotionallycharged and often personal. Conclusion: The emerging concept of SAI is important for understanding how Palliative Care can enhance care for this subset of patients. Keywords critical care, surgery, palliative care, prognostication, decision making, caregiver issues
Background This study explores the emerging concept of ‘‘sudden advanced illness’’ (SAI) and its relevance to a subset of patients with trauma requiring the services of both surgical critical care and palliative care specialists. In previous research, we investigated the perspective of trauma/burn and neurosurgery physicians in the intensive care unit (ICU) setting, particularly their approach to palliative care consultation.1 In this study, we expound upon our previous findings by seeking input from physicians specialized in palliative medicine, exploring their understanding of, experience with, and comfort level in caring for patients with SAI. We discuss commonalities and variations in the conceptualizations, components, and experiences of SAI between palliative care and surgical specialties. In so doing, we aim to expand our perspective on SAI as a distinct concept with relevance for the treatment and care of patients with trauma and their family members. Across the life course, accidental traumatic injury is a leading cause of death, particularly among children, teenagers, and young adults.2 More than 10% of patients with trauma surviving to hospital admission will die as inpatients from their injuries.3 In addition, more than 20% of all patients who die in the hospital will spend some portion of their hospital stay in the ICU.4 Clearly, there is a great need for quality end-of-life care in the hospital setting, particularly in the ICU. The American College of Surgeons first addressed this need in
1998 in their Principles Guiding Care at the End of Life, reaffirming them in 2005 with particular focus on respecting patient and family wishes, alleviating pain and other physical symptoms, and providing access to palliative and hospice services.5 Demonstrating improvement in the quality of end-oflife care provided in the ICU setting, however, has proven to be a challenge.6 Previous research has documented barriers to palliative care in the ICU.7 However, most researchers examined patient care in the medical rather than surgical ICU, focusing on the chronic diseases typical of a medical patient population, such as congestive heart failure and chronic obstructive pulmonary disease. These diseases tend to follow a more expected course of progression 1
Center for Palliative and Supportive Care, University of Alabama at Birmingham, Birmingham, AL, USA 2 Division of Geriatrics, Gerontology, and Palliative Care, University of Alabama at Birmingham—Birmingham, AL, USA 3 Division of General Pediatrics and Adolescent Medicine, University of Alabama at Birmingham—Birmingham, AL, USA 4 Birmingham/Atlanta VA Geriatric Research, Education, and Clinical Center (GRECC), Birmingham VA Medical Center—Birmingham, AL, USA Corresponding Author: Michael D. Barnett, MD, MS, Center for Palliative & Supportive Care, University of Alabama at Birmingham, 1720 2nd Avenue S, CH19 219, Birmingham, AL 35294, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
American Journal of Hospice & Palliative Medicine®
2 characterized by gradual decline and punctuated by recurrent exacerbations. Many of these studies described ICU patients as incapacitated, either by their illness or through sedation, and unable to participate in discussions exploring goals of care.8 Frequently, these studies found unrealistic expectations both from family and from physicians regarding treatment options and prognosis, leading to delays in the consideration of palliative care.7 In addition, ICU physicians reported being unprepared or undertrained in end-of-life symptom management.7 The surgical ICU presents further challenges to quality endof-life care. Many surgical patients present with acute conditions, characterized, in general, by less predictable trajectories and highly uncertain prognoses. Similar to the emergency care setting, there is typically an absence of preexisting or ongoing relationships between patients and formal caregivers.9 End-oflife discussions are often rushed and occur earlier on admission.10 Historically, there has been little education in palliative care for surgical critical care trainees. And there remains an overarching culture of rescue, where death is the main enemy, as opposed to suffering or impaired quality of life, and earlier initiation of palliative care involvement may been seen as ‘‘giving up’’ on the patient.11,12 Researchers and clinicians alike have proposed various methods to overcome these barriers and introduce palliative care into the ICU setting. These include educational interventions designed to teach fundamental palliative care competencies to all surgical critical care providers.7,13 Similar to plans designed to help prevent ventilator-acquired pneumonia or catheter-associated blood stream infections, ‘‘bundles’’ of palliative interventions that begin on admission or at some predetermined cutoff during ICU stay have been created.14,15 Clinical practice guidelines or ‘‘triggers,’’ which result in automatic Palliative Care consultation when certain clinical criteria are met, have been developed but have not consistently led to increased palliative care involvement for most patients in the surgical ICU.16,17 This has led many to focus more on the day-to-day integration of palliative care with surgical critical care, shifting from a linear curative to palliative approach to one based on simultaneous efforts that seek to gradually change the culture of the ICU.7,18 The goal is to introduce palliative care earlier and more consistently in the disease course without regard to the underlying injury or illness.
Methods Previous research focused on the decision-making process of attending surgeons from the Divisions of Trauma/Burn and Neurosurgery at the University of Alabama at Birmingham (UAB) Hospital, an academic level 1 Trauma Center.1 The UAB Trauma Center serves a primary catchment of approximately 1.3 million people but routinely accepts patients from the entire state of Alabama and adjacent states (Florida, Georgia, Mississippi, and Tennessee). In the initial arm of the study, researchers enrolled a total of 9 physicians, 6 from trauma/burn and 3 from neurosurgery. Of those interviewed, 78% were male and 100% were caucasian.
In this current arm of the study, we recruited a second cohort consisting of attending physicians specialized in palliative medicine from the UAB Division of Gerontology, Geriatrics, and Palliative Care. After obtaining approval from the Institutional Review Board at UAB, we contacted 11 potential participants and provided information about the study. Seven physicians were consented and enrolled in the study, 57% female and 100% caucasian. Between August and December 2009, the first author conducted 45- to 60-minute, face-toface interviews with the palliative care physicians. The interviewer used a semistructured, open-ended interview guide to facilitate the interview process. Although the specific content of the guide was not identical for both cohorts, each group was queried about (1) the definition of SAI, (2) an illustrative case, and (3) comfort level with such cases. Conversations were audio-recorded and transcribed in entirety. Using a line-by-line qualitative analysis of the interview transcripts, we identified recurring responses common to both cohorts as well as variations between and within cohorts. In this article, we present an analysis utilizing the interview data from both the surgical and the palliative care cohorts of the study (n ¼ 16). We articulate key findings, including (1) definitional components of SAI, (2) typical cases of SAI, and (3) comfort level with SAI. We illustrate these findings through exemplary quotes from both palliative medicine and surgical critical care attending physicians.
Results Definitional Components of SAI Respondents characterized SAI as an unforeseen event-related condition that typically emerges abruptly and produces devastating physiological and neurological damage, often in previously healthy and relatively younger patients. Sudden and unexpected. As the following quotes exemplify, a distinguishing feature of SAI is the temporal compression of an unanticipated transition from a state of health to a condition of deterioration. Within a time frame of often less than 24 hours, patients go from relative health to severe, catastrophic illness or injury, with little or no warning to prepare the patient and family for the situation confronting them: There’s an unprepared event. It’s not like a chronic illness where they’ve sort of seen someone declining slowly. It’s sort of like a lightning strike out of the blue . . . there is no adjustment. (Palliative) Unlike in other illnesses where there is something that leads up to it, this is a bit more sudden . . . [without] transition into the disease process and treatment . . . Of all the disease processes, this is really one of the more sudden. (Surgical)
Catastrophic and incapacitating. A hallmark of SAI is its profoundly devastating nature and frequently irreversible consequences. Whether from an unexpected stroke or traumatic
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
Barnett et al
3
brain injury, these patients often have severe neurologic injuries and are unable to make their end-of-life wishes known or to participate in discussions of treatment options. The SAI dramatically alters or cuts short the patient’s life and changes the lives of family members: Most of the time these people are fairly functional prior to whatever accident they had. And all of a sudden, they’re dying . . . But in this case . . . well, she just walked out this morning, was going to work and she told me she loved me, and now you tell me she’s going to die. (Palliative) [It involves] people with acute devastating life-altering conditions leaving little hope for meaningful recovery, meaningful quality of life . . . to be independent, to be at home again. (Surgical)
Healthier and younger patients. As the following quotes describe, respondents used a case-based approach to describe how SAI typically occurs off time in the life course, affecting individuals in the early stages or prime of life. Patients typically lack the usual host of comorbidities seen in older or chronically ill patients. When mention was made of elderly patients or those with chronic disease, it was in the context of an unrelated injury compounding their baseline illness or an unexpected surgical complication. This atypical nature of the SAI patient population is troubling to both family members and providers: [She] was sort of a feisty young woman, 18-years-old; now she’s in a persistent vegetative state. And her mother has been getting very angry with the nursing staff being demanding, insisting that the nurses are coming into the room too often. But later says that they’re not paying enough attention to her child. (Palliative) I had the one that was here almost a year. She was young, like in her thirties, and had every single complication possible, and stopped being compliant, stopped doing physical therapy/occupational therapy, stopped getting up, refusing this, refusing that. She had a complication and was back on the unit. (Surgical)
Uncertainty in prognostication. As the following quotes indicate, many of the physicians interviewed described an inherent prognostic uncertainty in cases of SAI. Often with younger age and lack of prior comorbidities, the outcome in patients with SAI is not clear even with severe injury. Prognosis does not follow the expected trajectory of other chronic illnesses, making it difficult for families to know what to expect and potentially engendering in them a false sense of hope. From a medical standpoint, it can be a lot more challenging because they, these patients usually have a very healthy heart, and very healthy lungs. And so when they have a brain injury for example, and you take them off the ventilator, they can live for a very long time. (Palliative) It is difficult to discuss prognosis and the reality of the disease process . . . Families usually don’t know what traumatic brain injury is. I tend to be more pessimistic than optimistic so as to not give people false hope. (Surgical)
Shift in decision-making responsibility. Faced with an ‘‘advanced’’ or catastrophic illness, patients with SAI are unable to make their end-of-life wishes known or participate in discussion of treatment options. As the following quotes illustrate, typical SAI cases involve young to midlife patients who are incapacitated by their illness and families who are catapulted into surrogate decision-making roles often without prior discussion of end-of-life preferences. In contrast to the typical Medical ICU decision-making role configurations, in the Surgical ICU the decision-making rights and responsibilities of patients with SAI often are transferred to an older parent, spouse, or sibling: [T]he decision-makers are often different also. Their children are young and it’s parents making the decision as opposed to the sort of traditional end-of-life from a chronic disease or a more subacute disease, [where] it’s adult children making the decisions. The roles are all different. The players are different. (Palliative) The patient can’t speak for themselves—they lack their capacity for one reason or another, and you have to talk to a parent, spouse, sibling, etc. (Surgical)
Typical Case of SAI Respondents describe SAI as an umbrella term encompassing patients with all-cause emergent and severe illness, injury, or insult. Although every patient has a unique spectrum of injury or illness with different mechanisms and circumstances, the typical case of SAI involves a neurological insult stemming from an array of causes including cardiac arrest, stroke, or traumatic brain injury. When asked to recount a memorable case of SAI, respondents referenced cases involving unexpected brain hemorrhage, ischemic stroke, refractory seizures, motor vehicle accidents, severe burns, gunshot wounds, and spinal cord injury. According to respondents, the typical SAI case is characterized by (1) physician’s uncertainty in prognostication, (2) patient’s sudden loss of decision-making capacity, and (3) family members’ lack of preparation for surrogate decision making.
Overwhelming nature of surrogacy. Because patients with SAI are often healthier and younger at baseline, the onset of an acute condition often comes as a shock to family members. The family’s situation is complicated by the fact that those with SAI are typically incapacitated and unable to participate openly in discussions of end-of-life goals. Such discussions can be highly emotionally charged for family members who typically are not prepared for dealing with life and death issues. As the following quotes illustrate, many patients and family have not had prior discussions about end-of-life wishes or engaged in a formal process of documenting advanced directives. This compounds the decision-making process and exacerbates the stressful nature of the SAI experience for already distraught family members:
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
American Journal of Hospice & Palliative Medicine®
4 Table 1. Defining Characteristics of SAI. Patient
Illness
Family
Care provider
Younger/healthier Catastrophically incapacitated
Unexpected onset Uncertain prognosis
Unanticipated role reversal Overwhelming medical decision making
Technical competence Emotional challenge
Abbreviation: SAI, sudden advanced illness.
The decision making is much more difficult and complex because there’s been no time to prepare: either from a practical standpoint in terms of thinking about what the decisions, what the preferences would be, or from an emotional standpoint in terms of coming to terms with loss. (Palliative) Every family has different dynamics and decision making process. There are decision makers, leaders, followers . . . but even if we’ve had a conversation and the family is on the same page . . . there is guilt involved in family decisions about withdrawing or not withdrawing care. (Surgical)
I’ve always felt very comfortable communicating very bad news and going through very stressful situations. With practice, I guess my comfort that I’m good at it has been affirmed. And I’m more and more comfortable with it as it were. (Palliative) [I’m] comfortable caring for patients, but delivering bad news doesn’t get easier . . . It is always assumed that someone else is going to have that conversation. That’s where Palliative Care comes into place . . . We typically think about getting them involved to help in terms communication with the family and helping them to come to grips with expectations. We try to do that, but sometimes I think is good when [someone] with a different perspective . . . starts talking with the families. (Surgical)
Comfort Level With SAI Both groups of physicians reported initial discomfort with SAI, a discomfort that is less acute over time. For some surgeons, there was a discomfort with family discussions and prognosis, such that discussions of end-of-life goals were best left to someone else. Several palliative physicians admitted to a general discomfort in the surgical setting, having trained primarily in internal medicine. Interestingly, one palliative attending described becoming less comfortable over time due to exposure to less than optimal outcomes.
Emotional challenge of SAI. Respondents described cases with SAI as emotionally charged and often intensely personal, reflecting the age and life stage of many of the physicians themselves. The stress of caring for patients with SAI is managed through coping skills developed on the job over many years of experience. However, coping strategies cannot fully moderate the cumulative emotional impact of working with patients in life and death situations.
I think at first they are a little bit overwhelming. But the more we’ve done, the more comfortable they’re getting. But they still, I think, tug at my heart more . . . I guess when you say ‘comfortable,’ I think of as in like technically comfortable at doing it. I’m technically comfortable with doing it, but I think emotionally they’re still more draining than some of the others that we deal with. (Palliative)
. . . the person is usually our age. The person is someone that we can relate to. It’s not somebody who is retired or been living in a nursing home for five years. This is somebody who is working just like we work, and looks like us, and has a family structure like us . . . I have a very difficult time dealing with end-of-life issues in people who haven’t had what I would consider a full, long life yet. And emotionally it’s just a lot more difficult for me to deal with young patients who are dying. (Palliative)
[I’m] very comfortable. I’ve been doing it for a long time. I have a good balance with trying to care, but not dying with or suffering with every single patient . . . and probably I’ve been matured from when I came here, kind of [thinking] ‘We have to keep everyone alive no matter what’ to ‘There are things worse than death.’ (Surgical)
It was initially very unsettling, but eventually I became desensitized to emotions after a few years of practice. You just take care of patient injuries. Your coping mechanisms are put into place, so it’s de-compartmentalized. You put emotions in a little box—it’s there, but not always consciously. You learn to cope and you don’t become completely desensitized. (Surgical)
Comfort with family discussions. In describing overall comfort with cases of SAI, most palliative and surgical physicians talked about their level of comfort with conducting family meetings about diagnosis, prognosis, and goals of care. For palliative care attending physicians, family discussions were an essential part of the provision of end-of-life care. For surgeons, facilitating family discussions was described variably as a straightforward task in the surgeon’s skill set or as a responsibility more suited to the expertise of the palliative care team.
Discussion In summary, when asked to characterize SAI, responses from palliative care and surgical critical care specialists exhibited substantial concordance. As an emerging concept in palliative care, SAI describes a unique patient population within the critical care setting. From the interviews with palliative care and surgical critical care physicians several components of SAI emerged (Table 1).
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
Barnett et al
5
Although a few physicians referred to the elderly patients with trauma or the sudden progression of chronic disease, the majority felt SAI to affect primarily younger patients. And, in contrast to the multiple comorbidities of many older Medicine patients, those with SAI were described as previously healthy and functional. From this baseline, these patients are confronted with a severe illness or injury that leaves them critically ill, often near death. Whether neurologically devastated or otherwise incapacitated by the illness or treatments rendered, these patients are unable therefore to participate in decisions concerning their own care. In contrast to the usual progression of chronic diseases, the emergence of SAI can occur without warning. There has been no time for anticipatory grief or preparation for the life changes that will occur as a consequence of the illness. Life is quite literally changed overnight. Sudden advanced illnesses do not follow any particular disease trajectory, and teasing out those cases that are terminal proves a difficult task for any physician. Mosenthal and associates have reviewed elsewhere the attempts to prognosticate in the surgical ICU. Various attempts have been made to remove as much uncertainty as possible with scoring systems (eg, APACHE (Acute Physiology and Chronic Health Evaluation) or GCS (Glasgow Coma Scale)) that rely on objective measures, but with little effect on end-of-life care or palliative care consultation.19 This uncertainty contributes to the unique challenges of SAI when making treatment decisions and discussing outcomes with decision makers. Our analysis identified surrogate decision making as a defining characteristic of SAI. Making treatment decisions is one of the most difficult aspects of SAI for families, as they are thrust into decision-making roles, placing a further burden on those already faced with sudden, intense grief. Roles are often reversed with parents making end-of-life decisions for their children, older siblings for incapacitated brothers and sisters, and husbands for wives. This contrasts with the ‘‘typical’’ case of an adult child making decisions for an aging parent seen frequently in the medical patient population. Too often, there have been no prior discussions of end-of-life care, no advance directives, or living wills prepared. Suddenly, family members are faced with the prospect of unexpected death or permanent disability and must mourn that loss while making multiple medical decisions quickly and with little preparation. Sudden advanced illness is more difficult for all of those involved, including physicians and other staff. Given patient’s acute presentation to emergency departments and trauma services, formal care providers are forced into discussions of sensitive end-of-life issues often without any prior relationship with the patients. Although physicians report feeling technically competent in managing cases of SAI, they agreed that the emotional work required of them was a challenge unique to SAI. Physicians report being confronted by their own mortality as these younger patients are often similar in age and stage of life. All agreed that the grief encountered in these cases was much more intense.
Limitations This study was limited by the small sample size and homogeneous physician cohorts. All participants were caucasian and recruited from a single center. As the intent of this study was to compare the views of trauma/burn and palliative medicine attending physicians, enrollment was limited to physicians. There is a compelling need to address the experiences and perspectives of other disciplines involved in the care of these patients. Furthermore, there is opportunity to explore the impact of SAI on other specialties outside the surgical ICU. Further research should examine the inpatient experience of patients with SAI, particularly symptom burden as Wood and Arnold discussed in their editorial on palliative care in the surgical ICU.20 For some patients, younger and healthier at baseline, there may be a tendency to ‘‘linger’’ in the ICU. Cumulative symptom burden may indeed be high. Identifying the subsets of patients with higher symptoms burden may result in earlier consultation to an interdisciplinary team for help in management. Other studies might further explore the surgical culture of cure, particularly as it applies to SAI, and the apparent resistance to palliative care involvement.21 The emotional impact of SAI is substantial for all involved. Elsewhere, families have reported the lack of attention given to their emotional needs while a patient is in the ICU.22 This is despite the fact that sudden death is a known risk factor for complicated mourning. Further research might investigate the support provided both for families and for staff. Recognizing the unique demands of SAI earlier in the hospital course may allow for development of mechanisms to assist with decision making and bereavement. Finally, comparison with sudden death in pediatric palliative care may provide a wealth of experience to apply to the adult population. The similarities of pediatric deaths and SAI are multiple, including younger age, lack of significant comorbidities, and lack of decision-making capacity. The role reversal seen in SAI is expected in pediatrics, where parents are routinely called on to make decisions on behalf of their children. And clearly, the profound emotional burden on clinicians, the sense of uncertainty, hopelessness, and powerlessness in sudden pediatric deaths can be extrapolated to those who care for SAI.23
Conclusion In the field of palliative medicine, the more traditional populations of patients with chronic and advanced illness such as cancer, dementia, heart failure, and chronic lung disease will likely continue to comprise the largest patient populations served. Communication, goal setting, bereavement, and consultation etiquette are areas that have been widely studied in these populations. However, with increasing growth of palliative and supportive care programs in acute care settings such as tertiary care hospitals with trauma programs, patients with the sudden onset of an advanced illness at the time of diagnosis will become part of the case mix of palliative medicine
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
American Journal of Hospice & Palliative Medicine®
6 teams. These individuals can be seen as a subset of particularly vulnerable patients with families that are faced with difficult decisions in a time of acute stress and duress. Devastating injury or neurologic emergencies require a different level of initial engagement, and the resulting care plan may be enhanced by an integrated interdisciplinary team equipped with fundamental competency in palliative care principles and an understanding of the dynamics of working in the surgical ICU setting. The emerging concept of SAI is an important one for understanding how the palliative medicine consultation process can enhance the care plan process for this subset of patients and families. This research examined how palliative medicine physicians and surgical critical care providers define components of SAI, describe typical cases, and comfort level with this patient population. Further study of the potential benefits of palliative medicine integration into the ICU as it relates to complicated bereavement, family satisfaction, trainee education, provider satisfaction, and communication with families will be crucial in the future.
9. 10.
11.
12.
13.
14.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
15.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
16.
References 1. Tilden LB, Williams BR, Tucker RO, MacLennan PA, Ritchie CS. Surgeons’ attitudes and practices in the utilization of palliative and supportive care services for patients with a sudden advanced illness. J Pall Med. 2009;12(11):1037-1042. 2. Heron M. Deaths: Leading causes for 2006. National Vitals Statistics Reports. National Vitals Statistics System, US Department of Health and Human Services. 2010;58(14):1-98. 3. Mosenthal AC, Murphy PA. Trauma care and palliative care: time to integrate the two? J Am Coll Surg. 2003;197(3):509-515. 4. 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(3):638-643. 5. American College of Surgeons’ Committee on Ethics. Statement on principles guiding care at the end of life. Bull Am Coll Surg. 1998;83(4):46. 6. DeCato TW, Engelberg RA, Downey L, et al. Hospital variation and temporal trends in palliative and end-of-life care in the ICU. Crit Care Med. 2013;41(6):1405-1411. 7. Nelson JE. Identifying and overcoming the barriers to highquality palliative care in the intensive care unit. Crit Care Med. 2006;34(11 suppl):5324-5331. 8. Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement
17.
18.
19. 20.
21.
22.
23.
by the American College of Critical Care Medicine. Crit Care Med. 2008;36(3):953-963. Chan GK. End-of-life models and emergency department care. Acad Emerg Med. 2004;11(1):79-86. Smith AK, Fisher J, Schonberg MA, et al. Am I doing the right thing? Provider perspectives on improving palliative care in the emergency department. Ann Emer Med. 2009;54(1): 86-93. Rodriguez KL, Barnato AE, Arnold RM. Perceptions and utilization of palliative care services in acute care hospitals. J Pall Med. 2007;10(1):99-110. Cassell J, Buchman TG, Streat S, Stewart RM. Surgeons, intensivists, and the covenant of care: administrative models and values affecting care at the end of life. Crit Care Med. 2003;31(5): 1551-1559. Adolph MD, Frier KA, Stawick SP, Gerlach AT, Papadimos TJ. Palliative critical care in the intensive care unit: A 2011 perspective. Int J Crit Illn Inj Sci. 2011;1(2):147-153. Mosenthal AC, Murphy PA. Interdisciplinary model for palliative care in the trauma and surgical intensive care unit: Robert Wood Johnson Foundation Demonstration Project for Improving Palliative Care in the Intensive Care Unit. Crit Care Med. 2006;34(11 suppl):S399-S403. Mosenthal AC, Murphy PA, Barker LK, Lavery R, Retano A, Livingston DH. Changing the culture around end-of-life care in the trauma intensive care unit. Trauma. 2008;64(6): 1587-1593. Bradley CT, Brasel KJ. Developing guidelines that identify patients who would benefit from palliative care services in the surgical intensive care unit. Crit Care Med. 2009;37(3): 946-950. Bradley C, Weaver J, Brasel K. Addressing access to palliative care services in the surgical intensive care unit. Surgery. 2010; 147(6):871-877. Mosenthal AC, Weismann DE, Curtis JR, et al. Integrating palliative care in the surgical and trauma intensive care unit: a report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care. Crit Care Med. 2012;40(4):1199-1206. Mosenthal AC, Lee KF, Huffman J. Palliative care in the surgical intensive care unit. J Am Coll Surg. 2002;194(1):75-83. Wood GJ, Arnold RM. How can we be helpful? Triggers for palliative care consultation in the surgical intensive care unit. Crit Care Med. 2009;37(3):1147-1148. Buchman TG, Cassell J, Ray SE, Wax ML. Who should manage the dying patient? Rescue, shame, and the surgical ICU dilemma. J Am Coll Surg. 2002;194(5):665-673. Lloyd-Williams M, Morton J, Peters S. The end-of-life care experiences of relatives of brain dead intensive care patients. J Pain Symp Manag. 2009;37(4):659-664. Truog RD, Christ G, Browning DM, Meyer EC. Sudden traumatic death in children: ‘‘We did everything, but your child didn’t survive.’’ JAMA. 2006;295(22):2646-2654.
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
Sudden Advanced Illness: An Emerging Concept Among Palliative Care and Surgical Critical Care Physicians
American Journal of Hospice & Palliative Medicine® 1-6 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114565108 ajhpm.sagepub.com
Michael D. Barnett, MD, MS1,2,3, Beverly R. Williams, PhD1,2,4, and Rodney O. Tucker, MD, MMM1,2
Abstract Background: End-of-life discussions in critically-ill patients with acute surgical conditions may be rushed and occur earlier during hospitalization. This study explores the concept of sudden advanced illness (SAI) and its relevance to patients requiring Palliative and Surgical Critical Care. Methods: Semi-structured interviews were completed with 16 physicians, querying each about (1) definitional components, (2) illustrative cases, and (3) comfort with SAI. Analysis was done by grounded theory. Results: SAI was characterized as unforeseen, emerging abruptly and producing devastating injury, often in healthy, younger patients. There is (1) prognostic uncertainty, (2) loss of capacity, and (3) unprepared surrogate decision-making. Cases are emotionallycharged and often personal. Conclusion: The emerging concept of SAI is important for understanding how Palliative Care can enhance care for this subset of patients. Keywords critical care, surgery, palliative care, prognostication, decision making, caregiver issues
Background This study explores the emerging concept of ‘‘sudden advanced illness’’ (SAI) and its relevance to a subset of patients with trauma requiring the services of both surgical critical care and palliative care specialists. In previous research, we investigated the perspective of trauma/burn and neurosurgery physicians in the intensive care unit (ICU) setting, particularly their approach to palliative care consultation.1 In this study, we expound upon our previous findings by seeking input from physicians specialized in palliative medicine, exploring their understanding of, experience with, and comfort level in caring for patients with SAI. We discuss commonalities and variations in the conceptualizations, components, and experiences of SAI between palliative care and surgical specialties. In so doing, we aim to expand our perspective on SAI as a distinct concept with relevance for the treatment and care of patients with trauma and their family members. Across the life course, accidental traumatic injury is a leading cause of death, particularly among children, teenagers, and young adults.2 More than 10% of patients with trauma surviving to hospital admission will die as inpatients from their injuries.3 In addition, more than 20% of all patients who die in the hospital will spend some portion of their hospital stay in the ICU.4 Clearly, there is a great need for quality end-of-life care in the hospital setting, particularly in the ICU. The American College of Surgeons first addressed this need in
1998 in their Principles Guiding Care at the End of Life, reaffirming them in 2005 with particular focus on respecting patient and family wishes, alleviating pain and other physical symptoms, and providing access to palliative and hospice services.5 Demonstrating improvement in the quality of end-oflife care provided in the ICU setting, however, has proven to be a challenge.6 Previous research has documented barriers to palliative care in the ICU.7 However, most researchers examined patient care in the medical rather than surgical ICU, focusing on the chronic diseases typical of a medical patient population, such as congestive heart failure and chronic obstructive pulmonary disease. These diseases tend to follow a more expected course of progression 1
Center for Palliative and Supportive Care, University of Alabama at Birmingham, Birmingham, AL, USA 2 Division of Geriatrics, Gerontology, and Palliative Care, University of Alabama at Birmingham—Birmingham, AL, USA 3 Division of General Pediatrics and Adolescent Medicine, University of Alabama at Birmingham—Birmingham, AL, USA 4 Birmingham/Atlanta VA Geriatric Research, Education, and Clinical Center (GRECC), Birmingham VA Medical Center—Birmingham, AL, USA Corresponding Author: Michael D. Barnett, MD, MS, Center for Palliative & Supportive Care, University of Alabama at Birmingham, 1720 2nd Avenue S, CH19 219, Birmingham, AL 35294, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
American Journal of Hospice & Palliative Medicine®
2 characterized by gradual decline and punctuated by recurrent exacerbations. Many of these studies described ICU patients as incapacitated, either by their illness or through sedation, and unable to participate in discussions exploring goals of care.8 Frequently, these studies found unrealistic expectations both from family and from physicians regarding treatment options and prognosis, leading to delays in the consideration of palliative care.7 In addition, ICU physicians reported being unprepared or undertrained in end-of-life symptom management.7 The surgical ICU presents further challenges to quality endof-life care. Many surgical patients present with acute conditions, characterized, in general, by less predictable trajectories and highly uncertain prognoses. Similar to the emergency care setting, there is typically an absence of preexisting or ongoing relationships between patients and formal caregivers.9 End-oflife discussions are often rushed and occur earlier on admission.10 Historically, there has been little education in palliative care for surgical critical care trainees. And there remains an overarching culture of rescue, where death is the main enemy, as opposed to suffering or impaired quality of life, and earlier initiation of palliative care involvement may been seen as ‘‘giving up’’ on the patient.11,12 Researchers and clinicians alike have proposed various methods to overcome these barriers and introduce palliative care into the ICU setting. These include educational interventions designed to teach fundamental palliative care competencies to all surgical critical care providers.7,13 Similar to plans designed to help prevent ventilator-acquired pneumonia or catheter-associated blood stream infections, ‘‘bundles’’ of palliative interventions that begin on admission or at some predetermined cutoff during ICU stay have been created.14,15 Clinical practice guidelines or ‘‘triggers,’’ which result in automatic Palliative Care consultation when certain clinical criteria are met, have been developed but have not consistently led to increased palliative care involvement for most patients in the surgical ICU.16,17 This has led many to focus more on the day-to-day integration of palliative care with surgical critical care, shifting from a linear curative to palliative approach to one based on simultaneous efforts that seek to gradually change the culture of the ICU.7,18 The goal is to introduce palliative care earlier and more consistently in the disease course without regard to the underlying injury or illness.
Methods Previous research focused on the decision-making process of attending surgeons from the Divisions of Trauma/Burn and Neurosurgery at the University of Alabama at Birmingham (UAB) Hospital, an academic level 1 Trauma Center.1 The UAB Trauma Center serves a primary catchment of approximately 1.3 million people but routinely accepts patients from the entire state of Alabama and adjacent states (Florida, Georgia, Mississippi, and Tennessee). In the initial arm of the study, researchers enrolled a total of 9 physicians, 6 from trauma/burn and 3 from neurosurgery. Of those interviewed, 78% were male and 100% were caucasian.
In this current arm of the study, we recruited a second cohort consisting of attending physicians specialized in palliative medicine from the UAB Division of Gerontology, Geriatrics, and Palliative Care. After obtaining approval from the Institutional Review Board at UAB, we contacted 11 potential participants and provided information about the study. Seven physicians were consented and enrolled in the study, 57% female and 100% caucasian. Between August and December 2009, the first author conducted 45- to 60-minute, face-toface interviews with the palliative care physicians. The interviewer used a semistructured, open-ended interview guide to facilitate the interview process. Although the specific content of the guide was not identical for both cohorts, each group was queried about (1) the definition of SAI, (2) an illustrative case, and (3) comfort level with such cases. Conversations were audio-recorded and transcribed in entirety. Using a line-by-line qualitative analysis of the interview transcripts, we identified recurring responses common to both cohorts as well as variations between and within cohorts. In this article, we present an analysis utilizing the interview data from both the surgical and the palliative care cohorts of the study (n ¼ 16). We articulate key findings, including (1) definitional components of SAI, (2) typical cases of SAI, and (3) comfort level with SAI. We illustrate these findings through exemplary quotes from both palliative medicine and surgical critical care attending physicians.
Results Definitional Components of SAI Respondents characterized SAI as an unforeseen event-related condition that typically emerges abruptly and produces devastating physiological and neurological damage, often in previously healthy and relatively younger patients. Sudden and unexpected. As the following quotes exemplify, a distinguishing feature of SAI is the temporal compression of an unanticipated transition from a state of health to a condition of deterioration. Within a time frame of often less than 24 hours, patients go from relative health to severe, catastrophic illness or injury, with little or no warning to prepare the patient and family for the situation confronting them: There’s an unprepared event. It’s not like a chronic illness where they’ve sort of seen someone declining slowly. It’s sort of like a lightning strike out of the blue . . . there is no adjustment. (Palliative) Unlike in other illnesses where there is something that leads up to it, this is a bit more sudden . . . [without] transition into the disease process and treatment . . . Of all the disease processes, this is really one of the more sudden. (Surgical)
Catastrophic and incapacitating. A hallmark of SAI is its profoundly devastating nature and frequently irreversible consequences. Whether from an unexpected stroke or traumatic
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
Barnett et al
3
brain injury, these patients often have severe neurologic injuries and are unable to make their end-of-life wishes known or to participate in discussions of treatment options. The SAI dramatically alters or cuts short the patient’s life and changes the lives of family members: Most of the time these people are fairly functional prior to whatever accident they had. And all of a sudden, they’re dying . . . But in this case . . . well, she just walked out this morning, was going to work and she told me she loved me, and now you tell me she’s going to die. (Palliative) [It involves] people with acute devastating life-altering conditions leaving little hope for meaningful recovery, meaningful quality of life . . . to be independent, to be at home again. (Surgical)
Healthier and younger patients. As the following quotes describe, respondents used a case-based approach to describe how SAI typically occurs off time in the life course, affecting individuals in the early stages or prime of life. Patients typically lack the usual host of comorbidities seen in older or chronically ill patients. When mention was made of elderly patients or those with chronic disease, it was in the context of an unrelated injury compounding their baseline illness or an unexpected surgical complication. This atypical nature of the SAI patient population is troubling to both family members and providers: [She] was sort of a feisty young woman, 18-years-old; now she’s in a persistent vegetative state. And her mother has been getting very angry with the nursing staff being demanding, insisting that the nurses are coming into the room too often. But later says that they’re not paying enough attention to her child. (Palliative) I had the one that was here almost a year. She was young, like in her thirties, and had every single complication possible, and stopped being compliant, stopped doing physical therapy/occupational therapy, stopped getting up, refusing this, refusing that. She had a complication and was back on the unit. (Surgical)
Uncertainty in prognostication. As the following quotes indicate, many of the physicians interviewed described an inherent prognostic uncertainty in cases of SAI. Often with younger age and lack of prior comorbidities, the outcome in patients with SAI is not clear even with severe injury. Prognosis does not follow the expected trajectory of other chronic illnesses, making it difficult for families to know what to expect and potentially engendering in them a false sense of hope. From a medical standpoint, it can be a lot more challenging because they, these patients usually have a very healthy heart, and very healthy lungs. And so when they have a brain injury for example, and you take them off the ventilator, they can live for a very long time. (Palliative) It is difficult to discuss prognosis and the reality of the disease process . . . Families usually don’t know what traumatic brain injury is. I tend to be more pessimistic than optimistic so as to not give people false hope. (Surgical)
Shift in decision-making responsibility. Faced with an ‘‘advanced’’ or catastrophic illness, patients with SAI are unable to make their end-of-life wishes known or participate in discussion of treatment options. As the following quotes illustrate, typical SAI cases involve young to midlife patients who are incapacitated by their illness and families who are catapulted into surrogate decision-making roles often without prior discussion of end-of-life preferences. In contrast to the typical Medical ICU decision-making role configurations, in the Surgical ICU the decision-making rights and responsibilities of patients with SAI often are transferred to an older parent, spouse, or sibling: [T]he decision-makers are often different also. Their children are young and it’s parents making the decision as opposed to the sort of traditional end-of-life from a chronic disease or a more subacute disease, [where] it’s adult children making the decisions. The roles are all different. The players are different. (Palliative) The patient can’t speak for themselves—they lack their capacity for one reason or another, and you have to talk to a parent, spouse, sibling, etc. (Surgical)
Typical Case of SAI Respondents describe SAI as an umbrella term encompassing patients with all-cause emergent and severe illness, injury, or insult. Although every patient has a unique spectrum of injury or illness with different mechanisms and circumstances, the typical case of SAI involves a neurological insult stemming from an array of causes including cardiac arrest, stroke, or traumatic brain injury. When asked to recount a memorable case of SAI, respondents referenced cases involving unexpected brain hemorrhage, ischemic stroke, refractory seizures, motor vehicle accidents, severe burns, gunshot wounds, and spinal cord injury. According to respondents, the typical SAI case is characterized by (1) physician’s uncertainty in prognostication, (2) patient’s sudden loss of decision-making capacity, and (3) family members’ lack of preparation for surrogate decision making.
Overwhelming nature of surrogacy. Because patients with SAI are often healthier and younger at baseline, the onset of an acute condition often comes as a shock to family members. The family’s situation is complicated by the fact that those with SAI are typically incapacitated and unable to participate openly in discussions of end-of-life goals. Such discussions can be highly emotionally charged for family members who typically are not prepared for dealing with life and death issues. As the following quotes illustrate, many patients and family have not had prior discussions about end-of-life wishes or engaged in a formal process of documenting advanced directives. This compounds the decision-making process and exacerbates the stressful nature of the SAI experience for already distraught family members:
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
American Journal of Hospice & Palliative Medicine®
4 Table 1. Defining Characteristics of SAI. Patient
Illness
Family
Care provider
Younger/healthier Catastrophically incapacitated
Unexpected onset Uncertain prognosis
Unanticipated role reversal Overwhelming medical decision making
Technical competence Emotional challenge
Abbreviation: SAI, sudden advanced illness.
The decision making is much more difficult and complex because there’s been no time to prepare: either from a practical standpoint in terms of thinking about what the decisions, what the preferences would be, or from an emotional standpoint in terms of coming to terms with loss. (Palliative) Every family has different dynamics and decision making process. There are decision makers, leaders, followers . . . but even if we’ve had a conversation and the family is on the same page . . . there is guilt involved in family decisions about withdrawing or not withdrawing care. (Surgical)
I’ve always felt very comfortable communicating very bad news and going through very stressful situations. With practice, I guess my comfort that I’m good at it has been affirmed. And I’m more and more comfortable with it as it were. (Palliative) [I’m] comfortable caring for patients, but delivering bad news doesn’t get easier . . . It is always assumed that someone else is going to have that conversation. That’s where Palliative Care comes into place . . . We typically think about getting them involved to help in terms communication with the family and helping them to come to grips with expectations. We try to do that, but sometimes I think is good when [someone] with a different perspective . . . starts talking with the families. (Surgical)
Comfort Level With SAI Both groups of physicians reported initial discomfort with SAI, a discomfort that is less acute over time. For some surgeons, there was a discomfort with family discussions and prognosis, such that discussions of end-of-life goals were best left to someone else. Several palliative physicians admitted to a general discomfort in the surgical setting, having trained primarily in internal medicine. Interestingly, one palliative attending described becoming less comfortable over time due to exposure to less than optimal outcomes.
Emotional challenge of SAI. Respondents described cases with SAI as emotionally charged and often intensely personal, reflecting the age and life stage of many of the physicians themselves. The stress of caring for patients with SAI is managed through coping skills developed on the job over many years of experience. However, coping strategies cannot fully moderate the cumulative emotional impact of working with patients in life and death situations.
I think at first they are a little bit overwhelming. But the more we’ve done, the more comfortable they’re getting. But they still, I think, tug at my heart more . . . I guess when you say ‘comfortable,’ I think of as in like technically comfortable at doing it. I’m technically comfortable with doing it, but I think emotionally they’re still more draining than some of the others that we deal with. (Palliative)
. . . the person is usually our age. The person is someone that we can relate to. It’s not somebody who is retired or been living in a nursing home for five years. This is somebody who is working just like we work, and looks like us, and has a family structure like us . . . I have a very difficult time dealing with end-of-life issues in people who haven’t had what I would consider a full, long life yet. And emotionally it’s just a lot more difficult for me to deal with young patients who are dying. (Palliative)
[I’m] very comfortable. I’ve been doing it for a long time. I have a good balance with trying to care, but not dying with or suffering with every single patient . . . and probably I’ve been matured from when I came here, kind of [thinking] ‘We have to keep everyone alive no matter what’ to ‘There are things worse than death.’ (Surgical)
It was initially very unsettling, but eventually I became desensitized to emotions after a few years of practice. You just take care of patient injuries. Your coping mechanisms are put into place, so it’s de-compartmentalized. You put emotions in a little box—it’s there, but not always consciously. You learn to cope and you don’t become completely desensitized. (Surgical)
Comfort with family discussions. In describing overall comfort with cases of SAI, most palliative and surgical physicians talked about their level of comfort with conducting family meetings about diagnosis, prognosis, and goals of care. For palliative care attending physicians, family discussions were an essential part of the provision of end-of-life care. For surgeons, facilitating family discussions was described variably as a straightforward task in the surgeon’s skill set or as a responsibility more suited to the expertise of the palliative care team.
Discussion In summary, when asked to characterize SAI, responses from palliative care and surgical critical care specialists exhibited substantial concordance. As an emerging concept in palliative care, SAI describes a unique patient population within the critical care setting. From the interviews with palliative care and surgical critical care physicians several components of SAI emerged (Table 1).
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
Barnett et al
5
Although a few physicians referred to the elderly patients with trauma or the sudden progression of chronic disease, the majority felt SAI to affect primarily younger patients. And, in contrast to the multiple comorbidities of many older Medicine patients, those with SAI were described as previously healthy and functional. From this baseline, these patients are confronted with a severe illness or injury that leaves them critically ill, often near death. Whether neurologically devastated or otherwise incapacitated by the illness or treatments rendered, these patients are unable therefore to participate in decisions concerning their own care. In contrast to the usual progression of chronic diseases, the emergence of SAI can occur without warning. There has been no time for anticipatory grief or preparation for the life changes that will occur as a consequence of the illness. Life is quite literally changed overnight. Sudden advanced illnesses do not follow any particular disease trajectory, and teasing out those cases that are terminal proves a difficult task for any physician. Mosenthal and associates have reviewed elsewhere the attempts to prognosticate in the surgical ICU. Various attempts have been made to remove as much uncertainty as possible with scoring systems (eg, APACHE (Acute Physiology and Chronic Health Evaluation) or GCS (Glasgow Coma Scale)) that rely on objective measures, but with little effect on end-of-life care or palliative care consultation.19 This uncertainty contributes to the unique challenges of SAI when making treatment decisions and discussing outcomes with decision makers. Our analysis identified surrogate decision making as a defining characteristic of SAI. Making treatment decisions is one of the most difficult aspects of SAI for families, as they are thrust into decision-making roles, placing a further burden on those already faced with sudden, intense grief. Roles are often reversed with parents making end-of-life decisions for their children, older siblings for incapacitated brothers and sisters, and husbands for wives. This contrasts with the ‘‘typical’’ case of an adult child making decisions for an aging parent seen frequently in the medical patient population. Too often, there have been no prior discussions of end-of-life care, no advance directives, or living wills prepared. Suddenly, family members are faced with the prospect of unexpected death or permanent disability and must mourn that loss while making multiple medical decisions quickly and with little preparation. Sudden advanced illness is more difficult for all of those involved, including physicians and other staff. Given patient’s acute presentation to emergency departments and trauma services, formal care providers are forced into discussions of sensitive end-of-life issues often without any prior relationship with the patients. Although physicians report feeling technically competent in managing cases of SAI, they agreed that the emotional work required of them was a challenge unique to SAI. Physicians report being confronted by their own mortality as these younger patients are often similar in age and stage of life. All agreed that the grief encountered in these cases was much more intense.
Limitations This study was limited by the small sample size and homogeneous physician cohorts. All participants were caucasian and recruited from a single center. As the intent of this study was to compare the views of trauma/burn and palliative medicine attending physicians, enrollment was limited to physicians. There is a compelling need to address the experiences and perspectives of other disciplines involved in the care of these patients. Furthermore, there is opportunity to explore the impact of SAI on other specialties outside the surgical ICU. Further research should examine the inpatient experience of patients with SAI, particularly symptom burden as Wood and Arnold discussed in their editorial on palliative care in the surgical ICU.20 For some patients, younger and healthier at baseline, there may be a tendency to ‘‘linger’’ in the ICU. Cumulative symptom burden may indeed be high. Identifying the subsets of patients with higher symptoms burden may result in earlier consultation to an interdisciplinary team for help in management. Other studies might further explore the surgical culture of cure, particularly as it applies to SAI, and the apparent resistance to palliative care involvement.21 The emotional impact of SAI is substantial for all involved. Elsewhere, families have reported the lack of attention given to their emotional needs while a patient is in the ICU.22 This is despite the fact that sudden death is a known risk factor for complicated mourning. Further research might investigate the support provided both for families and for staff. Recognizing the unique demands of SAI earlier in the hospital course may allow for development of mechanisms to assist with decision making and bereavement. Finally, comparison with sudden death in pediatric palliative care may provide a wealth of experience to apply to the adult population. The similarities of pediatric deaths and SAI are multiple, including younger age, lack of significant comorbidities, and lack of decision-making capacity. The role reversal seen in SAI is expected in pediatrics, where parents are routinely called on to make decisions on behalf of their children. And clearly, the profound emotional burden on clinicians, the sense of uncertainty, hopelessness, and powerlessness in sudden pediatric deaths can be extrapolated to those who care for SAI.23
Conclusion In the field of palliative medicine, the more traditional populations of patients with chronic and advanced illness such as cancer, dementia, heart failure, and chronic lung disease will likely continue to comprise the largest patient populations served. Communication, goal setting, bereavement, and consultation etiquette are areas that have been widely studied in these populations. However, with increasing growth of palliative and supportive care programs in acute care settings such as tertiary care hospitals with trauma programs, patients with the sudden onset of an advanced illness at the time of diagnosis will become part of the case mix of palliative medicine
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
American Journal of Hospice & Palliative Medicine®
6 teams. These individuals can be seen as a subset of particularly vulnerable patients with families that are faced with difficult decisions in a time of acute stress and duress. Devastating injury or neurologic emergencies require a different level of initial engagement, and the resulting care plan may be enhanced by an integrated interdisciplinary team equipped with fundamental competency in palliative care principles and an understanding of the dynamics of working in the surgical ICU setting. The emerging concept of SAI is an important one for understanding how the palliative medicine consultation process can enhance the care plan process for this subset of patients and families. This research examined how palliative medicine physicians and surgical critical care providers define components of SAI, describe typical cases, and comfort level with this patient population. Further study of the potential benefits of palliative medicine integration into the ICU as it relates to complicated bereavement, family satisfaction, trainee education, provider satisfaction, and communication with families will be crucial in the future.
9. 10.
11.
12.
13.
14.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
15.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
16.
References 1. Tilden LB, Williams BR, Tucker RO, MacLennan PA, Ritchie CS. Surgeons’ attitudes and practices in the utilization of palliative and supportive care services for patients with a sudden advanced illness. J Pall Med. 2009;12(11):1037-1042. 2. Heron M. Deaths: Leading causes for 2006. National Vitals Statistics Reports. National Vitals Statistics System, US Department of Health and Human Services. 2010;58(14):1-98. 3. Mosenthal AC, Murphy PA. Trauma care and palliative care: time to integrate the two? J Am Coll Surg. 2003;197(3):509-515. 4. 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(3):638-643. 5. American College of Surgeons’ Committee on Ethics. Statement on principles guiding care at the end of life. Bull Am Coll Surg. 1998;83(4):46. 6. DeCato TW, Engelberg RA, Downey L, et al. Hospital variation and temporal trends in palliative and end-of-life care in the ICU. Crit Care Med. 2013;41(6):1405-1411. 7. Nelson JE. Identifying and overcoming the barriers to highquality palliative care in the intensive care unit. Crit Care Med. 2006;34(11 suppl):5324-5331. 8. Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement
17.
18.
19. 20.
21.
22.
23.
by the American College of Critical Care Medicine. Crit Care Med. 2008;36(3):953-963. Chan GK. End-of-life models and emergency department care. Acad Emerg Med. 2004;11(1):79-86. Smith AK, Fisher J, Schonberg MA, et al. Am I doing the right thing? Provider perspectives on improving palliative care in the emergency department. Ann Emer Med. 2009;54(1): 86-93. Rodriguez KL, Barnato AE, Arnold RM. Perceptions and utilization of palliative care services in acute care hospitals. J Pall Med. 2007;10(1):99-110. Cassell J, Buchman TG, Streat S, Stewart RM. Surgeons, intensivists, and the covenant of care: administrative models and values affecting care at the end of life. Crit Care Med. 2003;31(5): 1551-1559. Adolph MD, Frier KA, Stawick SP, Gerlach AT, Papadimos TJ. Palliative critical care in the intensive care unit: A 2011 perspective. Int J Crit Illn Inj Sci. 2011;1(2):147-153. Mosenthal AC, Murphy PA. Interdisciplinary model for palliative care in the trauma and surgical intensive care unit: Robert Wood Johnson Foundation Demonstration Project for Improving Palliative Care in the Intensive Care Unit. Crit Care Med. 2006;34(11 suppl):S399-S403. Mosenthal AC, Murphy PA, Barker LK, Lavery R, Retano A, Livingston DH. Changing the culture around end-of-life care in the trauma intensive care unit. Trauma. 2008;64(6): 1587-1593. Bradley CT, Brasel KJ. Developing guidelines that identify patients who would benefit from palliative care services in the surgical intensive care unit. Crit Care Med. 2009;37(3): 946-950. Bradley C, Weaver J, Brasel K. Addressing access to palliative care services in the surgical intensive care unit. Surgery. 2010; 147(6):871-877. Mosenthal AC, Weismann DE, Curtis JR, et al. Integrating palliative care in the surgical and trauma intensive care unit: a report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care. Crit Care Med. 2012;40(4):1199-1206. Mosenthal AC, Lee KF, Huffman J. Palliative care in the surgical intensive care unit. J Am Coll Surg. 2002;194(1):75-83. Wood GJ, Arnold RM. How can we be helpful? Triggers for palliative care consultation in the surgical intensive care unit. Crit Care Med. 2009;37(3):1147-1148. Buchman TG, Cassell J, Ray SE, Wax ML. Who should manage the dying patient? Rescue, shame, and the surgical ICU dilemma. J Am Coll Surg. 2002;194(5):665-673. Lloyd-Williams M, Morton J, Peters S. The end-of-life care experiences of relatives of brain dead intensive care patients. J Pain Symp Manag. 2009;37(4):659-664. Truog RD, Christ G, Browning DM, Meyer EC. Sudden traumatic death in children: ‘‘We did everything, but your child didn’t survive.’’ JAMA. 2006;295(22):2646-2654.
Downloaded from ajh.sagepub.com at University of British Columbia Library on November 18, 2015
