Review Article
Patient Safety and End-of-Life Care: Common Issues, Perspectives, and Strategies for Improving Care
American Journal of Hospice & Palliative Medicine® 2016, Vol. 33(8) 791-796 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909115581847 ajhpm.sagepub.com
Sydney Morss Dy, MD, MSc1,2,3,4,5
Abstract The current state of the science in the fields of patient safety and palliative and end-of-life care have many issues in common. This article synthesizes recent systematic reviews and additional research on improving patient safety and end-of-life care and compares each field’s perspective on common issues, both in traditional patient safety frameworks and in other areas, and how current approaches in each field can inform the other. The article then applies these overlapping concepts to a key example area: improving documentation of patient preferences for life-sustaining treatment. The synthesis demonstrates how end-of-life issues should be incorporated into patient safety initiatives. In addition, evaluating overlap and comparable issues between patient safety and end-of-life care and comparing different perspectives and improvement strategies can benefit both fields. Keywords patient safety, medical errors, palliative care, palliative medicine, terminal care, end of life, hospice care
Introduction Attention to patient safety is fundamental for good end-of-life care. Patients at the end of life are fragile and require complex care and therefore are at high risk of safety issues, complications, and errors. Complications also have greater consequences, since time is limited and valuable with goals to be met, such as spending time with family. Stress from medical errors and their consequences adds to the distress of overwhelmed patients and caregivers, and the suffering and time burden of addressing complications can also impede goals of comfort at the end of life. Patient safety issues can interfere with end-of-life goals and comfort in other ways, such as having to wear gowns and gloves due to colonization with the drug-resistant organisms prevalent in patients with prolonged hospitalizations, which can dehumanize the experience and impede intimacy at the end of life. Considering end-of-life issues is also key for patient safety initiatives, since a high percentage of patients hospitalized for medical conditions have limited prognosis,1 and these patients are at higher risk of significant harm from patient safety issues. Initiatives such as rapid response systems need to consider the special needs and fragility of this population and coordinate with palliative care services to address goals of care and burdens of interventions. Patient safety and end-of-life care are also similar in risk factors for poor care and facilitators of quality improvement, including communication with and between providers,2,3 the need to address issues at the provider, team,4 and system5,6 levels, and the role of both policy7 and internal
quality improvement8,9 initiatives for change. However, addressing patient safety may require different approaches in end-of-life populations—patient and family preferences and quality of life are key in the balance between safety and quality of life, and overemphasis on patient safety may detract from promoting an end of life consistent with patient values, such as focusing on prevention of patient falls to the detriment of patient preferences for independence. For this article, we define patient safety as the prevention of avoidable errors and adverse effects to patients associated with health care, with the addition of considering harm to the family, and a patient safety practice (PSP) as a process or structure that reduces the probability of adverse events from exposure to health care across diseases and procedures.10 End of life is defined as the expected last days, weeks, or months of life for patients with advanced or incurable disease, and palliative care
1
Department of Health Policy & Management, Johns Hopkins University, Baltimore, MD, USA 2 Department of Oncology, Johns Hopkins University and Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD, USA 3 Department of Medicine, Johns Hopkins University, Baltimore, MD, USA 4 Armstrong Institute for Patient Safety and Quality, Baltimore, MD, USA 5 Harry J. Duffey Family Pain and Palliative Care Program, Baltimore, MD, USA Corresponding Author: Sydney Morss Dy, MD, MSc, Johns Hopkins University, Rm 609, 624 N Broadway, Baltimore, MD 21205, USA. Email: [email protected]
American Journal of Hospice & Palliative Medicine® 33(8)
792 Table 1. Key issues in end-of-life care related to patient safety.14 Issue
End-of-life perspective
Patient safety perspective
Included in patient safety frameworks10 Documentation of patient preferences Lack of communication and documentation often Preferences may be documented incorrectly, for life-sustaining treatment leads to care inconsistent with preferences inadequately discussed, or have changed High-alert medications (opioids) Treating pain is a priority Opioids have significant risks, medical errors are frequent Delirium May be necessary side effect of treating intractable May be related to overly aggressive symptom management or not considering side effects pain Also natural consequence of dying process Falls May need to consider balance between patient Fractures can be devastating, and medications goals and fall prevention can increase fall risk Pressure ulcers Balance with comfort at very end of life (pain from Can be distressing to family, painful repositioning) Important areas in end-of-life care that could be considered as patient safety Poorly controlled pain, symptoms
Frequently reported in medical error reporting Can lead to other patient safety issues, such as systems15 as causing harm delirium and falls Symptom diagnosis and management Inadequate assessment or reassessment may lead Using treatments without proven effectiveness or overtreatment can cause adverse effects errors to not treating the underlying cause, misdiagnosing one symptom as another (eg, insomnia vs delirium), or using the wrong treatment for a symptom Constipation from opioids without Constipation causes burden, distress Complications include hospitalizations, bowel bowel regimen rupture Prognostic errors, lack of considering Similar to diagnostic errors prognosis, or miscommunication Often related to lack of considering prognosis/ Procedures may have higher risks of Providing procedures or treatments prognostic errors/patient preferences complication and burden in fragile ill patients where likelihood of risks/burdens exceed benefits Communication errors/lack of With patient, family, or between team members, Lack of communication in very complex and rapidly changing patient situations can easily communication including lack of appropriate/ongoing lead to errors communication about goals of care Areas important to both patient safety and end-of-life improvement Teamwork, interdisciplinary Culture
Standardization of care
Different physicians caring for patient as well as Team training can reduce incidence of different disciplines (nurses, social workers) complications End-of-life practices, communication that occurs, Culture of safety associated with improved acceptability of addressing issues all vary outcomes markedly by setting/region16,17 Ordersets, checklists Structured communication templates, comfort care ordersets18,19
is care that optimizes quality of life by anticipating, preventing and treating suffering.11 This article applies findings from recent systematic reviews on strategies to improve palliative and end-of-life care12 and patient safety10 to describe common issues, both those included in the traditional patient safety perspective as well as other areas, from both the patient safety and end-of-life perspectives, and how current approaches in each field can inform the other. The article then addresses application of these factors and a PSPs classification framework to the domain of end-of-life care, Ensuring documentation of patients’ preferences for life-sustaining treatment,13 included in the US Agency for Healthcare Research and Quality Making Health Care Safer II review of PSPs.
Overlap Between Patient Safety and End-of-Life Care Key areas in end-of-life care related to patient safety are shown in Table 1. Some of these fit into traditional patient safety frameworks,10 although the importance and approach often differs for the end-of-life population. Although the key patient safety issues of falls, pressure ulcers, and delirium10 are all also important at the end of life, prevention strategies, such as repositioning, need to be weighed against patient comfort and preferences as death approaches. Delirium can cause significant suffering and can be exacerbated by excessive dosing or polypharmacy for multiple symptoms but may also be a side effect of necessary treatment of pain and is a natural part of the dying
Dy process.20 Weight loss in nursing home patients could be a sign of insufficient support in feeding or can be a natural and irreversible marker of decline at the end of life.21 Many other issues in palliative and end-of-life care are outside traditional patient safety frameworks10 but parallel to issues generally included as patient safety. For example, neglecting to recommend bowel regimens when prescribing opioids often leads to severe constipation and complications, similar to not prescribing postoperative deep venous thrombosis prophylaxis. Like diagnostic errors, errors in prognosis and prognosis communication, as well as the lack of communication and miscommunication that often happens at the end of life,22 can cause patient harm when patients consequently accept treatments that are unlikely to benefit them or patients and families suffer from misinformation. Errors in the diagnoses and treatment of symptoms can cause as much harm as misdiagnosis of illness. Uncontrolled pain and other symptoms are frequently reported in patient safety reporting systems15 as causing patient harm and could lead to other patient safety issues, such as falls and delirium. Procedures may be more likely to have complications and cause worsening functional status and other burden and providers therefore particularly need to consider the balance between benefits and burdens near the end of life.23 Failing to discontinue interventions that are no longer appropriate, such as not deactivating automatic defibrillators, can also cause harm.24 Although home-based issues are often not included in patient safety frameworks, they are critical for home end-oflife and hospice care, including issues such as misunderstanding of medication instructions by family caregivers; harm to family caregivers from lifting, stress, poor communication, or unsupported bereavement; or disruption of the comfortable dying process.25 Many of the same factors cause issues in patient safety and end-of-life care. Since both areas are not part of traditional clinical care, including the importance of the issue in everyday practice is a key first step. Many key aspects of quality are similar, including the importance of data collection using carefully developed measures evaluating structure and processes before choosing and initiating improvement strategies.26 More provider time generally leads to better care—higher nurse staffing reduces rates of complications,10 and increased attention from nurses at home improves palliative and end-of-life care.27 Communication is key to most quality deficits in both fields and areas that they share; in particular, communicating about end-of-life wishes is key to end-of-life preferences being followed.28 Structured approaches to care, such as checklists9 and communication guides,18 can be effective interventions for both areas. Culture, knowledge, and attitudes are also critical, and improvement initiatives must include education and culture change.6,29 Interdisciplinary approaches are also integral to both fields; although conceptualized differently as team training in patient safety4 and interdisciplinary teams in palliative and end-of-life care,30 elements of approaches common in each area could be beneficial for the other. The classification of PSPs31 shown in Table 2 also works well for palliative and end-of-life care interventions, particularly the
793 Table 2. Application of Most Relevant Classification Dimensions for Patient Safety Practices31 to Communication and Care Planning in End-of-Life Care. Dimension
Examples—communication and care planning
POLST/MOLST in some states7 DNR discussions required on admission in some hospitals Advance directives Documentation of advance directives Care planning as a process Goals of care meetings System Availability of palliative care services Provider Training in end-of-life communication skills Pervasive in setting Quality measures Targeted to specific patients Palliative care consultation Common Need for goals of care discussions Rare Resuscitation in patient who has a signed DNR Degree of provider Low—palliative care consultation behavioral change needed High—promoting providers to have goals of care discussions themselves (integrative approach)32 Regulatory Legal Performance measurement Voluntary
Abbreviations: POLST, Physician Orders for Life-Sustaining Treatment; MOLST, Medical Orders for Life-Sustaining Treatment; DNR, do not resuscitate.
area of communication and care planning.3 Dimensions of patient safety and end-of-life interventions can include regulatory or policy initiatives, such as state regulations for Physician Orders for Life-Sustaining Treatment (POLST), or voluntary internal quality improvement initiatives to improve communication about care planning.18 System interventions include developing palliative care services (which require less provider behavior change and are targeted to specific patients); provider-oriented interventions include training in communication. Finally, the perspective of issues relevant to both areas (the need for goals of care discussions at the end of life) is important, as well as the need to avoid rare but potentially very damaging events, such as attempting resuscitation on a dying patient with a documented do-not-resuscitate order.
Key Area—Improving Documentation of Patient Preferences for Life-Sustaining Treatment The care patients receive at the end of life is often inconsistent with their preferences, frequently because care providers have not discussed goals of care. Providing invasive treatments, such as intubation and resuscitation, that are inconsistent with patient preferences or have no chance of prolonging life can cause significant and unnecessary patient and family suffering. Ensuring documentation of preferences regarding lifesustaining treatment is one of the 2010 National Quality Forum’s 34 Safe Practices for Better Healthcare. This PSP includes33 the need for preferences to be prominently displayed
794 in the medical record and organizational policies to address these issues, including ventilation and issues such as dialysis, artificial nutrition and hydration, and chemotherapy. Regulatory and legal forms, such as advance directives and Medical Orders for Life-Sustaining Treatment, are one important mechanism for improving documentation of preferences across settings. However, they have a number of limitations: the forms and associated issues are complex, and completion and documentation of health care proxies and preferences for life-sustaining treatment therefore often does not occur34; preferences often change over time or in the course of serious illness; the communication that occurs in completing them is often inadequate; and they are often poorly incorporated into electronic medical records. Studies have also found that most physicians whose patients had advance directives were not aware of them, that having an advance directive may not increase medical record documentation of patient preferences and that preexisting advance directives are often not used in medical decision making.29,30 Describing these issues as care preferences also gives the perception that patients have a choice to avoid death. Ideally, care planning should be defined in the context of the goals and what is realistically possible and likely for that patient. True care planning for patients with serious illness and at the end of life goes far beyond filling out a form and may be better described as communication about serious illness care goals,18 a process that ideally occurs over time from the start of a serious illness, occurs through structured formats once patients are ill, such as in the intensive care unit, and includes families as well as patients. Important elements include communication about the illness and prognosis, as accurate perceptions are key to patient and family goals for the end of life, such as being at home with family rather than receiving aggressive treatment of no benefit, and discussion of values and meaning. A focus on maximizing quality of life or time spent with family can help direct care more toward comfort and symptom control than treatments such as chemotherapy. Different types of interventions for care planning, categorized by a framework for PSPs, are listed in Table 2. Structural changes in health systems and hospitals can significantly increase rates of advance directive completion, including high rates in the Veterans Administration,35 which has systematized use of advance directives and palliative care across the system, and with the Respecting Choices program in Lacrosse, Wisconsin.36 However, systematic reviews have found few prospective, controlled studies on the actual impact of documentation of preferences for life-sustaining treatment such as advance directives on patient outcomes,12 particularly in ill and cognitively intact populations, and concluded that the few existing studies have not found a significant impact.37,38 Although use of POLST, which go beyond advance directives to create a provider order accepted across health care settings in a state, is associated with high rates of care consistent with preferences in states where it is well established,7 no prospective controlled studies exist, and these initiatives also have a number of limitations.
American Journal of Hospice & Palliative Medicine® 33(8)
Discussion For both patient safety and end-of-life care, improving care means recognizing the frequency of the issue, addressing it regularly, and making the issue a priority by incorporating it into daily care. Ideally, since these areas have much in common, interventions can often address both and apply science from the other area—for example, concepts central to patient safety, such as safety culture29 and team training,4 are very relevant and could be well translated into palliative and end-of-life care. Nurse staffing is consistently associated with mortality and complications and increased high-quality nursing services also improves end-of-life outcomes. For both areas, addressing the issue must also not only be multidisciplinary— including different physicians involved in care as well as nurses, social workers, pharmacists, and others—but truly interdisciplinary, with close teamwork. Emphasizing patient and family engagement39 and eliciting patient preferences are key factors in both areas. Ideally, interventions can target both patient safety and endof-life care. Patient safety practices often end up addressing end-of-life issues as a critical component; for example, many patients that rapid response teams are called on are at the end of life and die on the day of the call; end-of-life care, such as discussions about patient preferences, is often part of the rapid response system40 but could be done more to improve care for these patients. Improvement strategies in one area can also have unintended consequences for other if not considered together and carefully, including taking staff time and effort away from ongoing efforts in other areas. Patient safety and end-of-life goals can conflict, such as efforts to keep dying patients alive to lower 30-day mortality rates for surgical procedures41 or weight loss monitoring in nursing homes leading to inappropriate and harmful feeding tube placement for patients at the end of life.42 Safety measures for patients with normal life expectancy may not be meaningful or can be harmful at the very end of life. Examples include balancing recommendations to reposition for pressure ulcer treatment against a dying patient’s preference to be left in peace43 and the use of naloxone, which, while a critical medication for opioid errors and overdose, can cause extreme suffering if given in full dose for a patient with declining respirations at the end of life. Patient safety for end-of-life care goes far beyond ensuring documentation for life-sustaining care. The burden of prevalent medical errors and patient safety issues, including iatrogenic infections, can cause particular regret, distress, and lasting challenges for families in bereavement as part of the grieving process. Patient safety issues should be a key component of palliative care and hospice programs, and attention to a variety of safety issues and principles can improve care and reduce patient and family distress as long as they are tailored to patient preferences and other needs at the end of life. Considering endof-life issues and the needs of this patient population can also improve the applicability and effectiveness of patient safety programs and initiatives and should be included more frequently.
Dy Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author received no financial support for the research, authorship, and/or publication of this article.
References 1. Billings JA, Gardner M, Putnam AT. A one-day, hospitalwide survey of dying inpatients. J Palliat Med. 2002;5(3): 363-374. 2. Woolf SH, Kuzel AJ, Dovey SM, Phillips RL Jr. A string of mistakes: the importance of cascade analysis in describing, counting, and preventing medical errors. Ann Fam Med. 2004; 2(4):317-326. 3. Fawole OA, Dy SM, Wilson RF, et al. A systematic review of communication quality improvement interventions for patients with advanced and serious illness. J Gen Intern Med. 2013; 28(4):570-577. 4. Weaver SJ, Dy SM, Rosen MA. Team-training in healthcare: a narrative synthesis of the literature. BMJ Qual Saf. 2014;23(5): 359-372. 5. Kohn LT, Corrigan JM, Donaldson MS. To Err is Human: Building a Safer Health System. Vol 627. Washington, DC: The National Academies Press; 2000. 6. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press; 2014. 7. Fromme EK, Zive D, Schmidt TA, Cook JN, Tolle SW. Association between physician orders for life-sustaining treatment for scope of treatment and in-hospital death in Oregon. J Am Geriatr Soc. 2014;62(7):1246-1251. 8. Lau BD, Aslakson RA, Wilson RF, et al. Methods for improving the quality of palliative care delivery: a systematic review. Am J Hosp Palliat Care. 2014;31(2):202-210. 9. Shekelle PG, Pronovost PJ, Wachter RM, et al. The top patient safety strategies that can be encouraged for adoption now. Ann Intern Med. 2013;158(5 pt 2):365-368. 10. Shekelle PG, Wachter RM, Pronovost PJ, et al. Making health care safer II: an updated critical analysis of the evidence for patient safety practices. Evid Rep Technol Assess (Full Rep). 2013;(211):1-945. 11. National Quality Forum. A national framework and preferred practices for palliative and hospice care quality. Washington, DC: The National Quality Forum; 2006. http://www.qualityforum.org/Publications/2006/12/A_National_Framework_and_Preferred_Practices_for_Palliative_and_Hospice_Care_Quality.aspx. 12. Dy S, Aslakson R, Wilson R, et al. Improving Health Care and Palliative Care for Advanced and Serious Illness. Closing the Quality Gap: Revisiting the State of the Science. Evidence Report No. 208. (Prepared by the Johns Hopkins University Evidencebased Practice Center under Contract No. 290-2007-10061-I.) AHRQ Publication No. 12(13)-E014-EF. Rockville, MD: Agency for Healthcare Research and Quality; 2012.
795 13. Dy S. Ensuring documentation of patients’ preferences for lifesustaining treatment: Brief update review In: Shekelle PG, Wachter RM, Pronovost PJ, et al. Making Health Care Safer II: An Updated Critical Analysis of the Evidence for Patient Safety Practices. Rockville, MD: Agency for Healthcare Research and Quality; 2013. http://www.ncbi.nlm.nih.gov/books/NBK133401/. 14. Dietz I, Borasio GD, Med DP, et al. Errors in palliative care: Kinds, causes, and consequences: a pilot survey of experiences and attitudes of palliative care professionals. J Palliat Med. 2013;16(1):74-81. 15. Dy SM, Shore AD, Hicks RW, Morlock LL. Medication errors with opioids: results from a national reporting system. J Opioid Manag. 2007;3(4):189-194. 16. Goodman DC, Fisher ES, Chang C, et al. Quality of end-of-life care for Medicare beneficiaries: regional and hospital-specific analyses. Lebanon, NH: The Dartmouth Atlas Project; 2010. http://www.dartmouthatlas.org/downloads/reports/Cancer_ report_11_16_10.pdf. 17. Morden NE, Chang CH, Jacobson JO, et al. End-of-life care for Medicare beneficiaries with cancer is highly intensive overall and varies widely. Health Aff (Millwood). 2012; 31(4):786-796. 18. Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994-2003. 19. Bailey FA, Williams BR, Woodby LL, et al. Intervention to improve care at life’s end in inpatient settings: the BEACON trial. J Gen Intern Med. 2014;29(6):836-843. 20. Bush SH, Leonard MM, Agar M, et al. End-of-life delirium: issues regarding recognition, optimal management and the role of sedation in the dying phase. J Pain Symptom Manage. 2014; 48(2):215-230. 21. Johnson VM, Teno JM, Bourbonniere M, Mor V. Palliative care needs of cancer patients in US nursing homes. J Palliat Med. 2005;8(2):273-279. 22. Fried TR, Bradley EH, O’Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc. 2003;51(10):1398-1403. 23. Dy SM, Harman SM, Braun UK, Howie LJ, Harris PF, Jayes RL. To stent or not to stent: an evidence-based approach to palliative procedures at the end of life. J Pain Symptom Manage. 2012; 43(4):795-801. 24. Fischberg D, Bull J, Casarett D, et al. Five things physicians and patients should question in hospice and palliative medicine. J Pain Symptom Manage. 2013;45(3):595-605. 25. Smucker DR, Regan S, Elder NC, Gerrety E. Patient safety incidents in home hospice care: the experiences of hospice interdisciplinary team members. J Palliat Med. 2014;17(5): 540-544. 26. Dy SM. Measuring the quality of palliative care and supportive oncology: principles and practice. J Support Oncol. 2013;11(4): 160-164. 27. Gomes B, Calanzani N, Higginson IJ. Benefits and costs of home palliative care compared with usual care for patients with advanced illness and their family caregivers. JAMA. 2014;311(10):1060-1061.
796 28. Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG. Endof-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28(7):1203-1208. 29. Weaver SJ, Lubomski LH, Wilson RF, Pfoh ER, Martinez KA, Dy SM. Promoting a culture of safety as a patient safety strategy: a systematic review. Ann Intern Med. 2013;158(5 pt 2): 369-374. 30. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care, 3rd ed. Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2013. http://www.nationalconsensusproject.org. 31. Dy SM, Taylor SL, Carr LH, et al. A framework for classifying patient safety practices: results from an expert consensus process. BMJ Qual Saf. 2011;20(7):618-624. 32. Nelson JE, Bassett R, Boss RD, et al. Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU project (Improving palliative care in the ICU). Crit Care Med. 2010;38(9):1765-1772. 33. National Quality Forum. Safe practices for better healthcare— 2010 update. Washington, DC: The National Quality Forum; 2010. http://www.qualityforum.org/Publications/2010/04/Safe_ Practices_for_Better_Healthcare_–_2010_Update.aspx. 34. Dy SM, Asch SM, Lorenz KA, et al. Quality of end-of-life care for patients with advanced cancer in an academic medical center. J Palliat Med. 2011;14(4):451-457. 35. Walling AM, Tisnado D, Asch SM, et al. The quality of supportive cancer care in the veterans affairs health system and targets for improvement. JAMA Intern Med. 2013;173(22):2071-2079.
American Journal of Hospice & Palliative Medicine® 33(8) 36. Hammes BJ, Rooney BL, Gundrum JD. A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. J Am Geriatr Soc. 2010; 58(7):1249-1255. 37. Walling A, Lorenz KA, Dy SM, et al. Evidence-based recommendations for information and care planning in cancer care. J Clin Oncol. 2008;26(23):3896-3902. 38. Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008;148(2):147-159. 39. Berger Z, Flickinger TE, Pfoh E, Martinez KA, Dy SM. Promoting engagement by patients and families to reduce adverse events in acute care settings: a systematic review. BMJ Qual Saf. 2014; 23(7):548-555. 40. Jones D, Moran J, Winters B, Welch J. The rapid response system and end-of-life care. Curr Opin Crit Care. 2013;19(6): 616-623. 41. Schwarze ML, Brasel KJ, Mosenthal AC. Beyond 30-day mortality: aligning surgical quality with outcomes that patients value. JAMA Surg. 2014;149(7):631-632. 42. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American geriatrics society feeding tubes in advanced dementia position statement. J Am Geriatr Soc. 2014;62(8):1590-1593. 43. Casarett D, Spence C, Clark MA, Shield R, Teno JM. Defining patient safety in hospice: principles to guide measurement and public reporting. J Palliat Med. 2012;15(10): 1120-1123.
Patient Safety and End-of-Life Care: Common Issues, Perspectives, and Strategies for Improving Care
American Journal of Hospice & Palliative Medicine® 2016, Vol. 33(8) 791-796 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909115581847 ajhpm.sagepub.com
Sydney Morss Dy, MD, MSc1,2,3,4,5
Abstract The current state of the science in the fields of patient safety and palliative and end-of-life care have many issues in common. This article synthesizes recent systematic reviews and additional research on improving patient safety and end-of-life care and compares each field’s perspective on common issues, both in traditional patient safety frameworks and in other areas, and how current approaches in each field can inform the other. The article then applies these overlapping concepts to a key example area: improving documentation of patient preferences for life-sustaining treatment. The synthesis demonstrates how end-of-life issues should be incorporated into patient safety initiatives. In addition, evaluating overlap and comparable issues between patient safety and end-of-life care and comparing different perspectives and improvement strategies can benefit both fields. Keywords patient safety, medical errors, palliative care, palliative medicine, terminal care, end of life, hospice care
Introduction Attention to patient safety is fundamental for good end-of-life care. Patients at the end of life are fragile and require complex care and therefore are at high risk of safety issues, complications, and errors. Complications also have greater consequences, since time is limited and valuable with goals to be met, such as spending time with family. Stress from medical errors and their consequences adds to the distress of overwhelmed patients and caregivers, and the suffering and time burden of addressing complications can also impede goals of comfort at the end of life. Patient safety issues can interfere with end-of-life goals and comfort in other ways, such as having to wear gowns and gloves due to colonization with the drug-resistant organisms prevalent in patients with prolonged hospitalizations, which can dehumanize the experience and impede intimacy at the end of life. Considering end-of-life issues is also key for patient safety initiatives, since a high percentage of patients hospitalized for medical conditions have limited prognosis,1 and these patients are at higher risk of significant harm from patient safety issues. Initiatives such as rapid response systems need to consider the special needs and fragility of this population and coordinate with palliative care services to address goals of care and burdens of interventions. Patient safety and end-of-life care are also similar in risk factors for poor care and facilitators of quality improvement, including communication with and between providers,2,3 the need to address issues at the provider, team,4 and system5,6 levels, and the role of both policy7 and internal
quality improvement8,9 initiatives for change. However, addressing patient safety may require different approaches in end-of-life populations—patient and family preferences and quality of life are key in the balance between safety and quality of life, and overemphasis on patient safety may detract from promoting an end of life consistent with patient values, such as focusing on prevention of patient falls to the detriment of patient preferences for independence. For this article, we define patient safety as the prevention of avoidable errors and adverse effects to patients associated with health care, with the addition of considering harm to the family, and a patient safety practice (PSP) as a process or structure that reduces the probability of adverse events from exposure to health care across diseases and procedures.10 End of life is defined as the expected last days, weeks, or months of life for patients with advanced or incurable disease, and palliative care
1
Department of Health Policy & Management, Johns Hopkins University, Baltimore, MD, USA 2 Department of Oncology, Johns Hopkins University and Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD, USA 3 Department of Medicine, Johns Hopkins University, Baltimore, MD, USA 4 Armstrong Institute for Patient Safety and Quality, Baltimore, MD, USA 5 Harry J. Duffey Family Pain and Palliative Care Program, Baltimore, MD, USA Corresponding Author: Sydney Morss Dy, MD, MSc, Johns Hopkins University, Rm 609, 624 N Broadway, Baltimore, MD 21205, USA. Email: [email protected]
American Journal of Hospice & Palliative Medicine® 33(8)
792 Table 1. Key issues in end-of-life care related to patient safety.14 Issue
End-of-life perspective
Patient safety perspective
Included in patient safety frameworks10 Documentation of patient preferences Lack of communication and documentation often Preferences may be documented incorrectly, for life-sustaining treatment leads to care inconsistent with preferences inadequately discussed, or have changed High-alert medications (opioids) Treating pain is a priority Opioids have significant risks, medical errors are frequent Delirium May be necessary side effect of treating intractable May be related to overly aggressive symptom management or not considering side effects pain Also natural consequence of dying process Falls May need to consider balance between patient Fractures can be devastating, and medications goals and fall prevention can increase fall risk Pressure ulcers Balance with comfort at very end of life (pain from Can be distressing to family, painful repositioning) Important areas in end-of-life care that could be considered as patient safety Poorly controlled pain, symptoms
Frequently reported in medical error reporting Can lead to other patient safety issues, such as systems15 as causing harm delirium and falls Symptom diagnosis and management Inadequate assessment or reassessment may lead Using treatments without proven effectiveness or overtreatment can cause adverse effects errors to not treating the underlying cause, misdiagnosing one symptom as another (eg, insomnia vs delirium), or using the wrong treatment for a symptom Constipation from opioids without Constipation causes burden, distress Complications include hospitalizations, bowel bowel regimen rupture Prognostic errors, lack of considering Similar to diagnostic errors prognosis, or miscommunication Often related to lack of considering prognosis/ Procedures may have higher risks of Providing procedures or treatments prognostic errors/patient preferences complication and burden in fragile ill patients where likelihood of risks/burdens exceed benefits Communication errors/lack of With patient, family, or between team members, Lack of communication in very complex and rapidly changing patient situations can easily communication including lack of appropriate/ongoing lead to errors communication about goals of care Areas important to both patient safety and end-of-life improvement Teamwork, interdisciplinary Culture
Standardization of care
Different physicians caring for patient as well as Team training can reduce incidence of different disciplines (nurses, social workers) complications End-of-life practices, communication that occurs, Culture of safety associated with improved acceptability of addressing issues all vary outcomes markedly by setting/region16,17 Ordersets, checklists Structured communication templates, comfort care ordersets18,19
is care that optimizes quality of life by anticipating, preventing and treating suffering.11 This article applies findings from recent systematic reviews on strategies to improve palliative and end-of-life care12 and patient safety10 to describe common issues, both those included in the traditional patient safety perspective as well as other areas, from both the patient safety and end-of-life perspectives, and how current approaches in each field can inform the other. The article then addresses application of these factors and a PSPs classification framework to the domain of end-of-life care, Ensuring documentation of patients’ preferences for life-sustaining treatment,13 included in the US Agency for Healthcare Research and Quality Making Health Care Safer II review of PSPs.
Overlap Between Patient Safety and End-of-Life Care Key areas in end-of-life care related to patient safety are shown in Table 1. Some of these fit into traditional patient safety frameworks,10 although the importance and approach often differs for the end-of-life population. Although the key patient safety issues of falls, pressure ulcers, and delirium10 are all also important at the end of life, prevention strategies, such as repositioning, need to be weighed against patient comfort and preferences as death approaches. Delirium can cause significant suffering and can be exacerbated by excessive dosing or polypharmacy for multiple symptoms but may also be a side effect of necessary treatment of pain and is a natural part of the dying
Dy process.20 Weight loss in nursing home patients could be a sign of insufficient support in feeding or can be a natural and irreversible marker of decline at the end of life.21 Many other issues in palliative and end-of-life care are outside traditional patient safety frameworks10 but parallel to issues generally included as patient safety. For example, neglecting to recommend bowel regimens when prescribing opioids often leads to severe constipation and complications, similar to not prescribing postoperative deep venous thrombosis prophylaxis. Like diagnostic errors, errors in prognosis and prognosis communication, as well as the lack of communication and miscommunication that often happens at the end of life,22 can cause patient harm when patients consequently accept treatments that are unlikely to benefit them or patients and families suffer from misinformation. Errors in the diagnoses and treatment of symptoms can cause as much harm as misdiagnosis of illness. Uncontrolled pain and other symptoms are frequently reported in patient safety reporting systems15 as causing patient harm and could lead to other patient safety issues, such as falls and delirium. Procedures may be more likely to have complications and cause worsening functional status and other burden and providers therefore particularly need to consider the balance between benefits and burdens near the end of life.23 Failing to discontinue interventions that are no longer appropriate, such as not deactivating automatic defibrillators, can also cause harm.24 Although home-based issues are often not included in patient safety frameworks, they are critical for home end-oflife and hospice care, including issues such as misunderstanding of medication instructions by family caregivers; harm to family caregivers from lifting, stress, poor communication, or unsupported bereavement; or disruption of the comfortable dying process.25 Many of the same factors cause issues in patient safety and end-of-life care. Since both areas are not part of traditional clinical care, including the importance of the issue in everyday practice is a key first step. Many key aspects of quality are similar, including the importance of data collection using carefully developed measures evaluating structure and processes before choosing and initiating improvement strategies.26 More provider time generally leads to better care—higher nurse staffing reduces rates of complications,10 and increased attention from nurses at home improves palliative and end-of-life care.27 Communication is key to most quality deficits in both fields and areas that they share; in particular, communicating about end-of-life wishes is key to end-of-life preferences being followed.28 Structured approaches to care, such as checklists9 and communication guides,18 can be effective interventions for both areas. Culture, knowledge, and attitudes are also critical, and improvement initiatives must include education and culture change.6,29 Interdisciplinary approaches are also integral to both fields; although conceptualized differently as team training in patient safety4 and interdisciplinary teams in palliative and end-of-life care,30 elements of approaches common in each area could be beneficial for the other. The classification of PSPs31 shown in Table 2 also works well for palliative and end-of-life care interventions, particularly the
793 Table 2. Application of Most Relevant Classification Dimensions for Patient Safety Practices31 to Communication and Care Planning in End-of-Life Care. Dimension
Examples—communication and care planning
POLST/MOLST in some states7 DNR discussions required on admission in some hospitals Advance directives Documentation of advance directives Care planning as a process Goals of care meetings System Availability of palliative care services Provider Training in end-of-life communication skills Pervasive in setting Quality measures Targeted to specific patients Palliative care consultation Common Need for goals of care discussions Rare Resuscitation in patient who has a signed DNR Degree of provider Low—palliative care consultation behavioral change needed High—promoting providers to have goals of care discussions themselves (integrative approach)32 Regulatory Legal Performance measurement Voluntary
Abbreviations: POLST, Physician Orders for Life-Sustaining Treatment; MOLST, Medical Orders for Life-Sustaining Treatment; DNR, do not resuscitate.
area of communication and care planning.3 Dimensions of patient safety and end-of-life interventions can include regulatory or policy initiatives, such as state regulations for Physician Orders for Life-Sustaining Treatment (POLST), or voluntary internal quality improvement initiatives to improve communication about care planning.18 System interventions include developing palliative care services (which require less provider behavior change and are targeted to specific patients); provider-oriented interventions include training in communication. Finally, the perspective of issues relevant to both areas (the need for goals of care discussions at the end of life) is important, as well as the need to avoid rare but potentially very damaging events, such as attempting resuscitation on a dying patient with a documented do-not-resuscitate order.
Key Area—Improving Documentation of Patient Preferences for Life-Sustaining Treatment The care patients receive at the end of life is often inconsistent with their preferences, frequently because care providers have not discussed goals of care. Providing invasive treatments, such as intubation and resuscitation, that are inconsistent with patient preferences or have no chance of prolonging life can cause significant and unnecessary patient and family suffering. Ensuring documentation of preferences regarding lifesustaining treatment is one of the 2010 National Quality Forum’s 34 Safe Practices for Better Healthcare. This PSP includes33 the need for preferences to be prominently displayed
794 in the medical record and organizational policies to address these issues, including ventilation and issues such as dialysis, artificial nutrition and hydration, and chemotherapy. Regulatory and legal forms, such as advance directives and Medical Orders for Life-Sustaining Treatment, are one important mechanism for improving documentation of preferences across settings. However, they have a number of limitations: the forms and associated issues are complex, and completion and documentation of health care proxies and preferences for life-sustaining treatment therefore often does not occur34; preferences often change over time or in the course of serious illness; the communication that occurs in completing them is often inadequate; and they are often poorly incorporated into electronic medical records. Studies have also found that most physicians whose patients had advance directives were not aware of them, that having an advance directive may not increase medical record documentation of patient preferences and that preexisting advance directives are often not used in medical decision making.29,30 Describing these issues as care preferences also gives the perception that patients have a choice to avoid death. Ideally, care planning should be defined in the context of the goals and what is realistically possible and likely for that patient. True care planning for patients with serious illness and at the end of life goes far beyond filling out a form and may be better described as communication about serious illness care goals,18 a process that ideally occurs over time from the start of a serious illness, occurs through structured formats once patients are ill, such as in the intensive care unit, and includes families as well as patients. Important elements include communication about the illness and prognosis, as accurate perceptions are key to patient and family goals for the end of life, such as being at home with family rather than receiving aggressive treatment of no benefit, and discussion of values and meaning. A focus on maximizing quality of life or time spent with family can help direct care more toward comfort and symptom control than treatments such as chemotherapy. Different types of interventions for care planning, categorized by a framework for PSPs, are listed in Table 2. Structural changes in health systems and hospitals can significantly increase rates of advance directive completion, including high rates in the Veterans Administration,35 which has systematized use of advance directives and palliative care across the system, and with the Respecting Choices program in Lacrosse, Wisconsin.36 However, systematic reviews have found few prospective, controlled studies on the actual impact of documentation of preferences for life-sustaining treatment such as advance directives on patient outcomes,12 particularly in ill and cognitively intact populations, and concluded that the few existing studies have not found a significant impact.37,38 Although use of POLST, which go beyond advance directives to create a provider order accepted across health care settings in a state, is associated with high rates of care consistent with preferences in states where it is well established,7 no prospective controlled studies exist, and these initiatives also have a number of limitations.
American Journal of Hospice & Palliative Medicine® 33(8)
Discussion For both patient safety and end-of-life care, improving care means recognizing the frequency of the issue, addressing it regularly, and making the issue a priority by incorporating it into daily care. Ideally, since these areas have much in common, interventions can often address both and apply science from the other area—for example, concepts central to patient safety, such as safety culture29 and team training,4 are very relevant and could be well translated into palliative and end-of-life care. Nurse staffing is consistently associated with mortality and complications and increased high-quality nursing services also improves end-of-life outcomes. For both areas, addressing the issue must also not only be multidisciplinary— including different physicians involved in care as well as nurses, social workers, pharmacists, and others—but truly interdisciplinary, with close teamwork. Emphasizing patient and family engagement39 and eliciting patient preferences are key factors in both areas. Ideally, interventions can target both patient safety and endof-life care. Patient safety practices often end up addressing end-of-life issues as a critical component; for example, many patients that rapid response teams are called on are at the end of life and die on the day of the call; end-of-life care, such as discussions about patient preferences, is often part of the rapid response system40 but could be done more to improve care for these patients. Improvement strategies in one area can also have unintended consequences for other if not considered together and carefully, including taking staff time and effort away from ongoing efforts in other areas. Patient safety and end-of-life goals can conflict, such as efforts to keep dying patients alive to lower 30-day mortality rates for surgical procedures41 or weight loss monitoring in nursing homes leading to inappropriate and harmful feeding tube placement for patients at the end of life.42 Safety measures for patients with normal life expectancy may not be meaningful or can be harmful at the very end of life. Examples include balancing recommendations to reposition for pressure ulcer treatment against a dying patient’s preference to be left in peace43 and the use of naloxone, which, while a critical medication for opioid errors and overdose, can cause extreme suffering if given in full dose for a patient with declining respirations at the end of life. Patient safety for end-of-life care goes far beyond ensuring documentation for life-sustaining care. The burden of prevalent medical errors and patient safety issues, including iatrogenic infections, can cause particular regret, distress, and lasting challenges for families in bereavement as part of the grieving process. Patient safety issues should be a key component of palliative care and hospice programs, and attention to a variety of safety issues and principles can improve care and reduce patient and family distress as long as they are tailored to patient preferences and other needs at the end of life. Considering endof-life issues and the needs of this patient population can also improve the applicability and effectiveness of patient safety programs and initiatives and should be included more frequently.
Dy Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author received no financial support for the research, authorship, and/or publication of this article.
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