A WIN-WIN SOLUTION FOR AN AILING HEALTHCARE SYSTEM

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1 A WIN-WIN SOLUTION FOR AN AILING HEALTHCARE SYSTEM Evidence for the Benefits of Advance Care Planning By Steve Wardle, MBA Edited by Elizabeth Truong, MD

2 OVERVIEW The IHI Triple Aim ADVANCE CARE PLANNING Current State of ACP Patient-Physician Communication Breakdown REVIEWING THE EVIDENCE Goal 1 Reducing the per capita cost of healthcare Goal 2 Improving the patient experience of care Goal 3 Improving the health of populations CONCLUSION REFERENCES

3 OVERVIEW The healthcare delivery system in the US has major challenges with respect to value. Currently, there is a poor balance between the total cost of the healthcare system and the benefits received by the population. The US healthcare system consumes nearly 18% of the country s GDP ¹, and is projected to increase to 20% of the GDP by 2020 ². Despite this high spending, the outcomes are mixed. The World Health Organization s last global healthcare system ranking placed the US Healthcare US HEALTHCARE SPENDING The Highest Per Capita in the World by Nearly ³ 50% 2.5X The OECD Average Spend Per Capita System 37th in the world, behind Costa Rica 4, while the Commonwealth Fund recently ranked US healthcare system performance last among the 11 richest OECD countries 5. OVERALL RANKING (2013) Health Expenditures / Capita, 2011** Overview 1

4 THE IHI TRIPLE AIM Partially in response to this, the Institute for Health Improvement (IHI) established the Triple Aim framework for optimizing healthcare system performance. When it was developed in 2007, the triple aim appeared radical and possibly an unrealistic framework, as it called for improvements to patient expereince and the health of populations simultaneous with a reduction in the per capita cost of healthcare. Today, it is mainstream, guiding provider strategic initiatives and legislative reform agendas. A Google search for triple aim health returns nearly 18 million results. While the shift in mind set is positive, triple aim success stories have been slower to emerge. One of the few healthcare initiatives available today that can achieve the triple aim is advance care planning. Reduce the Per Capita Cost of Healthcare Improve the Patient Experience of Care Improving the Health of Populations Overview 2

5 ADVANCE CARE PLANNING Advance Care Planning (ACP) is a series of discussions between health professionals and patients that provide education on disease, explores patient goals, and ultimately documents preferences for future care in living wills or advance directives. The discussions elicit values, spirituality, culture, and other influencers of care as a part of the decision tree. The process ideally includes loved ones/caregivers that may be surrogate decision-makers in the future if the patient were to lose decision-making capacity, these surrogates can be the legally recognized medical Power of Attorney (MPOA). ACP has been precticed and studied for some decades, and strong evidence exists of the benefits to the patient, their loved ones, the healthcare delivery system, and payers. ACP has been practiced and studied for some decades, and strong evidence exists of the benefits to the patient, their loved ones, the healthcare delivery system, and payers. Advance Care Planning 3

6 Advanced Care Planning supports all three arms of the IHI Triple Aim Goal. REDUCE THE PER CAPITA COST OF HEALTHCARE Reduces spending in the last years to weeks of life. Reduces hospital time and ICU days. Reduces post-acute care utilization. IMPROVE THE PATIENT EXPERIENCE OF CARE Improves satisfaction scores at end of life (EOL) for both patients and caregivers. Lowers frequency and degree of conflict between all involved parties. Fosters empowerment so patients receive care that is aligned with the their wishes. IMPROVE THE HEALTH OF POPULATIONS Reduces deaths in hospitals and increases hospice utilization. Improves quality of life and extends length of life. Reduces distressing symptoms of deppression and pain for patients and caregiver. Advance Care Planning 4

7 CURRENT STATE OF ACP Despite the benefits, ACP has yet to emerge in the mainstream or be widely available. A 2015 Poll by Kaiser Health 6 Found 9 out of 10 Adults Feel Doctors Should Discuss End-of-Life Care With Patients... However Only 2 out of 10 Adults Reported Being Able To An observational study 7 of physicians practicing at two prominent academic hospitals found a surprising lack of both incidence and quality of communication between physicians and seriously ill patients. Reaffirming the September 2015 Kaiser Health Tracking Poll, 66% of serious ill patients had no end-of-life care discussions. When discussions did occur, the discussions were abstract, medical jargon was used, patient s life goals were not discussed, and no recommendations or evidence-based predictions of outcome were offered. Advance Care Planning 5

8 CURRENT STATE OF ACP 1Minute Average Time Spent on Code Status 1out of 80 Encounters Involved a Physician-led Discussion on Prognosis with Code Status In a study 8 of elderly patients at high risk of dying in the next 6 months being treated at 12 different acute care hospitals, communication with healthcare providers was inadequate. Only 30.3% of elderly patients, with a mean age of 80 years old, reported having an advance care plan discussion with their physician. Only 30% of medical records of elderly patients had documentation of care preferences in chart. Advance Care Planning 6

9 PATIENT-PHYSICIAN COMMUNICATION BREAKDOWN ACP currently has low adoption rates in the US, despite the strong evidence of benefits to and demand from patients. A variety of reasons exist as to why ACP is not more widely adopted by physicians. The breakdown in patientphysician communication has been explored by a number of researchers, and two recent reports from IOM 9 and California Healthcare Foundation (CHCF) 10 had very similar findings on this. They are summarized below and discussed in more detail on the following page. LACK OF TIME LACK OF TRAINING DESIRE TO MAINTAIN HOPE DIFFICULTY IN REMAINING OBJECTIVE UNSUPPORTIVE SYSTEM Advance Care Planning 7

10 The main drivers of patient-physician communication breakdowns around ACP from the IOM and CHCF reports are discussed below: LACK OF TIME The IOM report cited insufficient time as the most significant contributing factor, with two thirds of physicians citing this as a serious barrier. Since ACP takes hours to deliver, lack of time is likely to remain an issue for the physician-driven model in addition to the lack of reimbursement to physicians for ACP. LACK OF TRAINING The CHCF study found that 71% of physicians had no formal training in discussing end-of-life wishes with patients or families. Having uncomfortable discussions on future care requires specialized training and practice with facilitation and communication techniques. DESIRE TO MAINTAIN HOPE Nearly half of the doctors in the CHCF study felt that their primary role with the patient is to treat. They have significant concerns that having ACP discussions will signal to the patient that they are giving up. The IOM report supported the same findings. DIFFICULTY IN REMAINING OBJECTIVE In a study of 343 doctors providing estimates on 468 terminally ill patients, 63% overestimated survival time, and the average overestimation was 530% too high. Only about 33% of estimates were considered accurate. The stronger the relationship was between the patient and physician, and the higher likelihood that the prognosis would be overestimated. UNSUPPORTIVE SYSTEM According to CHCF, 71% of physicians reported not having a formal system for analyzing goals of care and end-of-life wishes, and 24% reported having no location within their EHR to insert ACP documents for future reference. Advance Care Planning 8

11 REVIEW OF EVIDENCE - ACP AS A TRIPLE AIM SOLUTION For the adoption of ACP to increase, whether through a physician-led model or alternative models, the benefits must be clear and aligned with the overall strategic direction of industry players and the trends in healthcare reform. It is only by aligning incentives for patients, providers and payers alike that true change can occur. The IHI triple aim framework provides the underpinning for much of the market and regulatory reform efforts in healthcare today, including how how payers, providers and even patients are incentivized. Therefore, ACP needs to be seen as a triple aim solution if it is to move from being the exception to the rule in how healthcare is delivered in the US. We now turn to reviewing the evidence of reduced cost, improved patient expereince and improved popualtion health being acheived through ACP. There is Strong Evidence that Advance Care Planning is a Powerful Triple Aim Solution Reduce the Per Capita Cost of Healthcare Improve the Patient Experience of Care 9 Improving the Health of Populations Review of Evidence 9

12 Triple Aim Goal 1 Reducing the Per Capita Cost of Healthcare Review of Evidence 10

13 REDUCING THE PER CAPITA COST OF HEALTHCARE Various studies have found evidence of significantly reduced spending in the final weeks and years of life. The reduction is over 35% in the final week of life and the final two years of life. Roughly half of medical claims in the US are paid by the Center for Medicare and Medicaid Services (CMS), and approximately 25% of CMS costs are for treatments in the last year of life. This spending has never been shown to improve outcomes. A cost reduction by over 35% for this segment of the population, which accounts for such an inordinate share of total spending, would have a dramatic impact on achieving the triple aim goal of reducing per capita cost. ACP reduces spending in the last week to two years of life. STUDY A 14 A health care system in La Cross, WI, named Gundersen Health made ACP mandatory for patients over 55 years old and has promoted ACP in the surrounding community for over two decades. As a result, ACP adoption is far higher than anywhere else in the US, with 96% of patients with severe and terminal illness having an Advance Directive compared to the national average of 24%. 15 Medicare Spending Region Last 2 Years of Life National Average $70,685 La Crosse, WI $45,611 Review of Evidence 11

14 STUDY A (continued) Thus, La Crosse is widely studied as a test market for the impact of ACP. The Dartmouth Atlas of Healthcare divided the nation into Hospital Referral Regions (HRR). In 2012, the La Crosse HRR spends 35.5% or $25,075 less per patient ($45,611 vs. $70,686) when compared to Medicare s national average spending in the last two years of life. La Crosse effectively has the the lowest Medicare spending in the country (second only to sparsely-popualted Minot, ND). $25,075 or 35.5% Reduction in Medicare Costs Per Patient in the Last 2 Years of Life Some of the drivers of this decrease is spending found by the study include signficant reductions in hospital usage and ICU utilization. Inpatient hospital days in the last two years of life was 6.7 days lower than the national average. 1Week Less Inpatient Time Per Patient During Last 2 Years of Life Further, the percentage of decedents that spent seven or more days in the ICU during the last six months of life in La Crosse was 2.7% compared the national average of 15.2%. 18 Review of Evidence 12

15 STUDY B 16 Advanced cancer patients who had end-of-life discussions with their physician had a mean reduction of 37.5% or $1,041, in 2008 US dollars, in health care costs in the last week of life compared with those who did not have EoL discussions. Interestingly, a direct inverse relationship existed between costs and quality of death, with higher costs driving down the quality of death. 37.5% Reduction in Healthcare Costs Per Patient in the Last Week of life. STUDY C 17 A study published in 2016 of American adults with an advanced cancer diagnosis showed that a palliative care consultation and advance care planning within two days of hospital admission reduced patient cost by 22% (approximately $2,321) for patients with lower comorbidity scores and 32% (approximately $3,515) for patients with highest comorbidity scores. Earlier consultation and severity of comorbidities correlated with larger cost savings. Total Direct 22% Reduction 33% Reduction With Palliative Care Without Palliative Care Healthcare Costs Patients with comorbidity score of 2-3 Patients with comorbidity score of 4 or more Review of Evidence 13

16 Triple Aim Goal 2 Improving the Patient Experience of Care Review of Evidence 14

17 IMPROVING THE PATIENT EXPERIENCE OF CARE There is strong evidence that ACP improves the experience of care for both the patient and their family members or caregivers. Relevant research cites: improved satisfaction scores for both patients and caregivers, lower rates of decisional conflict at EOL for patients and surrogates, care that is more aligned with the patient s wishes, reduced hospital time, fewer deaths in hospitals, and more utilization of and longer time spent in hospice. ACP improves satisfaction scores for both patients and caregivers. STUDY A 19 In a study of inpatient cancer or end-stage medical illness patients and their family members, only 18% of patients and 31% of family members recalled a prognosis conversation with their physician. Patients who had a prognosis discussion had higher satisfaction with overall care and were also more satisfied with communication and decision-making aspects of care. They were also more willing to discuss CPR than those who did not have a prognosis discussion, which is an integral aspect of ACP. Patients who were in accordance with family members on whether they were nearing EOL also had increased satisfaction in all 3 areas. Family satisfaction with overall care was also higher if they participated in EOL discussions. Review of Evidence 15

18 STUDY A (continued) 18% of Patients Only & 31% of Family Members Had Discussions About Prognosis With A Physician ACP Lowers rates of conflict at end of life for patients and surrogates. STUDY B 20 A study published in the Annals of the American Thoracic Society found that 48% of surrogate decision makers of patients with acute respiratory distress syndrome experienced moderate or high levels of decisional conflict. Surrogates who engaged in ACP conversations had significantly less decisional conflict than those who did not with a mean score 3.3 points lower on the Decisional Conflict Scale. 48% of Surrogate Decision Makers Experienced Moderate or High Levels of Decisional Conflict Review of Evidence 16

19 STUDY C 21 A study published in the Journal of the American Geriatrics Society investigated the effect of providing education regarding the risks, benefits and life sustaining treatment alternatives for hypothetical medical decisions for 78 residents of community-based living facilities. The study found that education (a core part of the ACP process) resulted in reduced levels of decisional conflict for adults. ACP fosters empowerment so patients receive care that is aligned with their wishes. STUDY D 22 A study published in the New England Journal of Medicine found that 70.3% of adults over 60 years old with advanced illness did not have decision-making capacity and needed a surrogate decision maker. Among the subjects in the study who had advance directives, the vast majority stated a preference for limited or comfort care. The study also found that 83.2% of those who requested Limited Care (some limits to care in certain situations) and 97.1% of those who requested Comfort Care (living pain free while forgoing extensive measure to prolong life) received actual care consistent with their preferences. Subjects with advance directives, a key component of ACP, were less likely to receive highly aggressive care than those without, which shows that the default care delivered without documented patient preferences is aggressive care, or All Care Possible, in order to prolong life under any circumstances. Subjects with a durable power of attorney also had a lower chance of receiving highly aggressive care and a lower chance of dying in a hospital. Review of Evidence 17

20 STUDY D 3746 Decedents 1536 Required Decision Making 2128 Did Not Required Decision Making 82 Had Unknown Decision Making Status 999 Had Decision Made by Surrogate 410 Made Own Decision 127 Had Unknown Decision Making Status 67 Had Living Will Only 215 Had Appointed Durable Power of Attorney for Health Care Only 378 Had Living Will and Had Appointed Durable Power of Attorney for Healthcare Only 1 Had Unknown Advance-Directive Status 338 Did Not Have Living Will and Had Appointed Durable Power of Attorney for Healthcare Only With Advance Care Plan in Place 82% of People Received Their Preference of Limited Care 97.1% of People Received Their Preference of Comfort Care Review of Evidence 18

21 Triple Aim Goal 3 Improving the Health of Populations Review of Evidence 19

22 IMPROVING THE HEALTH OF POPULATIONS There is strong evidence that ACP improves the health of populations from the standpoint of improving quality of life (QoL) and longevity for patients, and improved mental and physical health for caregivers. ACP reduces deaths in hospitals and increases hospice enrollment. STUDY A 23 92% Of Patients w/ ACP Prefered Comfort Care Bischoff et al. studied end-of-life care for 4,394 decedents with a mean age 82.6 years old. Of the total, 66% engaged in ACP and were categorized into three groups by preference for EOL care: All Care Possible, Some Limits, and Comfort Care. 92% of all patients preferred Comfort Care. ACP improved quality of care at EOL by reducing in-hospital deaths, increasing hospice enrollment, reducing hospice admittance within 3 or fewer days of death when benefits are significantly reduced. There was also evidence of reduced emergency room and ICU utilization. Reduction in Hospital Deaths Increase in Hospice Utilization Advance Care Planning Reduction of Hospice Admittance Review of Evidence 20

23 ACP improves quality of life and extends length of life. STUDY B 24 A study published in the New England Journal of Medicine determined that of 151 metastatic non-small-cell lung cancer patients, those who received palliative care, of which ACP is a core component, had significantly higher quality of life (QoL) and fewer symptoms of depression (16% vs. 38%). Standard Care Early Palliative Care Patients With Mood Symptoms (%) HADS-D HADS-A PHQ-9 Quality of Life Indicators Palliative care patients also had 25% longer median survival times (11.6 months vs. 8.9 months) despite fewer patients receiving aggressive care (33% vs. 54%). 25%Longer Life for Patients w/ ACP Review of Evidence 21

24 STUDY C 25 Garrido and Prigerson found that more than 50% of caregivers reported distress (i.e. regret, anxiety, and depression) about the patient s EOL care 6 months following the death of a loved one. In the 245 bereaved family members, the study found that the three best predictors of lower caregiver distress were better patient quality of death scores, reduced caregiver distress before the death of the patient, and documentation of the patients wishes (more specifically the completion of a do-not-resuscitate order). Better Patient Quality of Life Better Caregiver Distress Before Death Lower Caregiver Distress Documentation Of Patient s Wishes ACP reduces distressing symptoms of depression and psychological distress for patients and caregivers. Review of Evidence 22

25 STUDY D 26 Wright et al. found in their 342-cancer-patient study, that patients who die in a hospital or ICU have worse QoL compared to those who die at home. Further, the bereaved caregivers of patients who died in the hospital had a heightened risk for developing posttraumatic stress disorder and prolonged grief disorder. Interventions aimed at decreasing terminal hospitalization, such as ACP, may enhance QoL for patients and decrease the risk of developing psychological disorders for bereaved caregivers. Bereaved Caregivers of Patients Who Died in the Hospital had Heightened Risk of PTSD & Prolonged Grief. Review of Evidence 23

26 THE ANATOMY OF PROPER ACP The best healthcare outcomes for patients, families, providers, and payers start with all the stakeholders being informed and empowered, discussing options, and assuring that treatment preferences are widely known. Advance Care Planning is a significant part of the solution to assure those with serious, chronic illnesses achieve outcomes that fits their goals and honors their preferences. The studies referenced in this document share a similar structure around the intervention. To move towards desired results, it s useful to understand that structure. INFORM ACP starts with assuring that people understand their illness. The healthcare professional (HCP) providing this acts as a facilitator or guide in throughout the process. The HCP is not there to impose their opinions on the patient and family but instead elicit baseline knowledge, educate, and promote a robust dialogue. Patients gain perspective on their current situation, future options and complications, and the impact of their condition on how they might feel and function. Studies continue to demonstrate two significant trends around serious conditions. One is that people have little understanding of their medical condition. Few patients and families understand what an illness is currently doing to the body, which bodily functions or organs are compromised, which ones will become compromised in the future, and what the natural history of the illness looks like. The second unfortunate trend is that those same patients have little understanding of the what the illness does beyond the body how it might limit their activities and work or the impact on personal finances. Informed consent springs from understanding burdens and benefits. This level of understanding is the result of a dialogue where questions are answered, insights take shape, concerns are addressed. ACP begins with education. This step concludes with a request to the patient to spend time reflecting on what they ve learned. Conclusion 24

27 REFLECT AND DISCUSS The reflection time is when the patient can talk with confidants, pray, spend time in a pensive state, or employ whichever method they choose to process information. Once this is accomplished more sessions are held. These subsequent sessions bring out influencers of care such as values, goals, spirituality, family dynamics, and financial situation. They integrate these things with what they understand about their medical condition. It is here that the patient s loved ones learn about patient treatment preferences for future care. Common situations and scenarios are explored that are relevant to the specific person for their specific situation. This is a highly personalized process. Family members and other stakeholders in the patient s life have an opportunity to express hopes and concerns. Often times different levels of conflict or disagreement will be revealed. The facilitator s role is to unravel these situations and assure the patient s voice has an advocate while assuring that all parties feel heard and valued. This is not an easy task. Opinions often differ, feelings are strong, and the stakes are high. Once care preferences have been expressed and there is agreement to honor the patient s choices, the discussions can conclude. However, it is important to note that this may not be a one and done piece of the process. It is not uncommon for several sessions to be held for these goals to be realized. DOCUMENT AND DISSEMINATE Typically, patient preferences are documented in state-sanctioned forms such as the Directive to Physician, Medical Power of Attorney, Out of Hospital Do Not Resuscitate, or the Physician Order for Life Sustaining Treatment (POLST). In an ideal state additional documentation is done specific to the particular patient and their highly unique set of circumstances. The documents are signed, witnessed, and/or notarized depending on the state statutes. Once the paperwork is finalized then the documents are distributed to the extend the patient allows. The recipients may include the patient, the chosen healthcare agent, other loved ones, the primary care provider, any specialists involved in their care, the hospital system utilized, and, if applicable, the facility in which they reside. Documents should be accessible electronically within the electronic medical record or in other technologic depositories to assure they can be retrieved and reviewed anytime, anywhere. Conclusion 25

28 NEXT STEPS Healthcare is moving swiftly from fee-for-service to value based services. In parallel, regulatory forces exert a stronger presence and consumer scrutiny is driving transparency and information sharing. These movements all make it imperative for payers, hospitals, and providers to assure that patients wishes are explored, understood, documented, and followed. There are four suggested steps that should be well-defined processes and, where appropriate, automated. 1) 2) 3) 4) Identify Providers, hospitals, and payers need to understand who needs ACP and when its most appropriate. The earlier someone engages in ACP the better the outcomes for all involved. Engage Patients and family members consistently need more information, with multiple repetitions, regarding the specific serious medical condition(s) they are facing. Making decisions consistent with their goals will leave patients feeling valued and important. Document While completing advance directive forms and physician orders for end-of-life care is a good place to start, the documentation needs to be much more upstream. The record should not state only what a patient wants when they are actively dying but along the entire trajectory of the illness. Disseminate - The patient and all the stakeholders in their care family and friends, primary care and specialty providers, hospitals, and facilities all need easy access to the documents so that they are actionable at the point of care. No healthcare system in the world has a perfect approach to ACP. In fact, most have little to no operations dedicated to this crucial service. As ACP is one of the few offerings in healthcare that truly benefits the patients and families, providers, hospitals, and payers it is past time to see this become more widely championed and available. Iris Plans can help you in all, or any, of the steps. We provide ACP for patients and families facing serious medical conditions anytime, anywhere. Our cost-saving, convenient process, via videoconferencing and on-line tools, makes a significant impact on utilization, communication, and satisfaction on the patients that are the most complex. Conclusion 26

29 Iris Plans provides Advance Care Planning via telehealth to people facing serious medical conditions across the US We partner with health insurers and healthcare providers in our mission to make this win-win solution available to all Contact: Phil Ovitt (800) Conclusion 27

30 REFERENCES ¹ US Congressional budget office. ² Centers for Medicare and Medicaid Services, Office of the Actuary. ³ OECD Health Statistics Organization for Economic Co-operation and Development World Health Organization. The World Health Report 2000 Health systems: Improving performance. France, Davis K, et al. Mirror, Mirror on the Wall: How the U.S. Healthcare System Compares Internationally, 2014 Update. The Commonwealth Fund. June DiJulio B, Firth J, and Brodie M. Kaiser Health Tracking Poll: September Kaiser Family Foundation. Sep Anderson W, et al. Code status discussions between attending hospitalist physicians and medical patients at hospital admission. J Gen Intern Med. 2011;26(4): Heyland, DK, et al. Failure to engage hospitalized elderly patients and their families in Advance Care Planning. JAMA Intern Med. 2013;173(9): Dying in America: Improving quality and honoring individual preferences near the end of life. Institute of Medicine. Washington, DC, Conversation Stopper: What's Preventing Physicians from Talking with Patients About End-of- Life and Advance Care Planning? California Health Care Foundation. Apr Christakis N and Lamont E. Extent and determinants of error in doctors prognoses in terminally ill patients: prospective cohort study. BMJ. 2000;320: Riley GF and Lubitz JD. Long-term trends in medicare payments in the last year of life. Health Serv Res. 2010;45(2): Hogan C, et al. Medicare beneficiaries costs of care in the last year of life. Health Aff. 2001;20(4): The Dartmouth Atlas of Healthcare. (2012): Online. Internet 10 Jun Available: 15 Hames BJ, Rooney BL, and Gudrum 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: Zhang B, et al. Health care costs in the last week of life: Associations with end of life conversations. Arch Intern Med. 2009;169(5): The study examined health care costs of 603 advanced cancer patients in the last week of life. 188 Patients reported having end-of- life conversations with their physician, and were compared against a group of 145 control patients. References 28

31 REFERENCES (continued) 17 May P. et al. Palliative care team s cost-saving effect is larger for cancer patients with higher numbers of comorbidities. Health Aff. 2016;35: The study included 906 adult patients with advanced cancer and comorbidities, excluding dementia or patients that had previously received palliative care. Data was from the period of 2007 to Patients were from 6 hospitals 2 tertiary care academic medical centers, 1 specialty cancer center, and 3 community teaching hospitals. 192 patients received palliative care within 2 days of admission. For patients with a comorbidity score of 0-1, the estimated reduction in cost was not significant. However, for patients with a score of 2-3, the estimated reduction in cost was 22% (approximately $2321). Furthermore, for patients with a score of 4 or higher, the reduction was 32% (approximately $3515). 18 The Dartmouth Atlas of Healthcare. (2012): Online. Internet 10 Jun Available: Heyland DK, et al. Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care. Open Med. 2009;3(2):e A total of 440 inpatients with advanced cancer or end-stage medical disease and 160 family members participated in the study. The survey included a 5-domain questionnaire and supplementary questions on satisfaction with specific aspects of EOL and their overall satisfaction with EOL. 20 Chiarchiaro J, et al. Prior advance care planning is associated with less decisional conflict in surrogates. Ann of the Am Thorac Soc. 2015;12(10): The study was a secondary data analysis of a multicenter prospective cohort study completed at five U.S. academic medical centers, which included 471 surrogates of 257 critically ill patients with acute respiratory distress syndrome to examine if prior advance care planning is associated with less decisional conflict. 21 Allen RS, et al. End-of- life decision-making, decisional conflict, and enhanced information: Race effects. J Am Geriatr Soc. 2008;56(10) Silveira MJ, Kim SYH, and Langa KM. Advance directives and outcomes of surrogate decision-making before death. N Engl J Med. 2010; 362: The study looked at the prevalence of the need for a surrogate decision maker and concordance of treatment plan with Advance Directives for patients having them. Of the 3,746 subjects studied, 42.5% required decision-making. Of this subset, 70.3% did not have decision-making capacity and 67.6% of this group had advance directives, the vast majority of which requested limited or comfort care. 23 Bischoff KE, et al. Advance care planning and the quality of end-of- life care in older adults. J Am Geriatr Soc. 2013; 61(2) Temmel JS, et al. Early palliative care for patients with metastatic non-small- cell lung cancer. N Engl J Med. 2010;363(8): In the study, mood symptoms were measured using the Hospital Anxiety and Depression Scale (HADS) and the Patient Health Questionnaire 9 (PHQ-9). Health-related quality of life was measured by the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the lungcancer subscale (LCS) was used specifically for lung cancer. 25 Garrido MM and Prigerson HG. The end-of- life experience: modifiable predictors of caregivers bereavement adjustment. Cancer. 2014;120(6): Wright AA, et al. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregiver s mental health. J Clin Oncol. 28(29): Institute of Medicine References 29

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