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The challenge of the end of-life discussion housestaff 2014
- 1. The Challenge of the End-of-Life Discussion: How and when should we begin to broach the one subject we are trying to avoid with our terminally-ill patient population” Steven Ades, MD MPH Ursula McVeigh, MD
- 2. Dying from Advanced Cancer in the United States in 2013 The Scope of the Problem • Dartmouth Atlas Project (2010 Update) Medical Resource Utilization Patterns among Medicare Beneficiaries Ades S, NVONS 2013
- 3. Among 306 Hospital Referral Regions Death & Hospitalization 29 % % cancer patients dying in hospital % cancer patients admitted to hospital last month of life Quality of End-of-Life Cancer Care for Medicare Beneficiaries Regional and Hospital-Specific Analyses: Dartmouth Atlas Project 2010 61.3 % Ades S, NVONS 2013
- 4. Among 137 Academic Medical Centers Dying in Hospital Regional and HospitalSpecific Analyses: Dartmouth Atlas Project 2010 Fletcher Allen HC 29.8 % deaths in hospital 61.9 % admitted in last month Ades S, NVONS 2013
- 5. Among 306 Hospital Referral Regions ICU in the last month of life Regional and HospitalSpecific Analyses: Dartmouth Atlas Project 2010 24 % (FAHC13.8%) Ades S, NVONS 2013
- 6. Among 306 Hospital Referral Regions Hospice enrolment in the last month of life 55 % (46.6%) Ades S, NVONS 2013
- 7. Dartmouth Atlas Project: Conclusions 1. ~1/3 of patients with poor prognosis cancer spent their last days in hospitals and intensive care units. 2. ~10 % received advanced life support interventions such as endotracheal intubation, feeding tubes and cardiopulmonary resuscitation (CPR). 3. The use of hospice care varied markedly across regions and hospitals. In at least 50 academic medical centers, less than half of patients with poor prognosis cancer received hospice services. 4. In some hospitals, referral to hospice care occurred so close to the day of death that it was unlikely to have provided much assistance and comfort to patients. Ades S, NVONS 2013
- 8. The impact of an EOL Discussion CanCORS Cohort Study • Target Pop: 1,231 patients, stage IV lung or colon ca • Main outcome: aggressiveness of EOL care received Ades S, NVONS 2013 Mack J, et al. J Clin Oncol 2012; 30:4387-95
- 9. EOL Discussions Are they really taking place? (CanCORS) • Target Pop: 2,155 patients, stage IV lung or colon ca 2003 – 2005 North Carolina, LA County, Northern Ca, Iowa, Alabama (5 large HMOs, 15 VHA sites) • Main outcome: Incidence of EOL care discussions • Design: prospective cohort Ades S, NVONS 2013 Mack JW et al, Ann Int Med 2012
- 10. EOL Discussions Are they really taking place? (CanCORS) • 73 % (1,573 pts) had EOL care discussions – 87 % among 1470 pts who died at f/u, median 33 days before death – 41 % among 685 pts who were alive • Audit of initial 1,081 EOL discussions – 55 % occurred in hospital • 85 % (1,823 pts) had medical oncology records: documented EOL care in only 27 % Ades S, NVONS 2013 Mack JW et al, Ann Int Med 2012
- 11. The EOL Discussion: Impact on Patient & Caregiver Coping with Cancer (CwC)Cohort Study • Target Pop: 332 dyads of terminally-ill cancers pts and caregivers • Follow-up: enrollment to death (median 4.4 mo) • Outcomes: – Aggressive medical care Final week of life – Hospice – pt mental health – caregiver bereavement adjustment Ades S, NVONS 2013 Wright, A et al. J Clin Oncol 2012; 30:4387-95
- 12. The EOL Discussion: Impact on Patient & Caregiver – CwC Study Ades S, NVONS 2013 Wright, A et al. J Clin Oncol 2012; 30:4387-95
- 13. The EOL Discussion: Impact on Patient & Caregiver – CwC Study Ades S, NVONS 2013 Wright, A et al. J Clin Oncol 2012; 30:4387-95
- 14. The EOL Discussion: Impact on Patient Care - CwC Cohort Study Ades S, NVONS 2013 Wright, A et al. J Clin Oncol 2012; 30:4387-95
- 15. The EOL Discussion: Impact on Caregiver CwC Cohort Study • Caregivers of pts who received aggressive care at higher risk of: – Major depressive disorder (OR 3.37) – Experiencing regret – Feeling unprepared for the pt’s death – Worse QOL • Pt QOL near death bereaved caregiver QOL Ades S, NVONS 2013 Wright, A et al. J Clin Oncol 2012; 30:4387-95
- 17. Outline • What is an end of life conversation? – What works? • Impact of prognostication and prognostic understanding on care received at the end of life • Present a cognitive framework for cultivating prognostic awareness over time
- 18. End of Life Discussions: What do we want this to achieve? • Quality end of life care: – Don’t want people to receive non-beneficial care and burdensome therapies near the end of life – We want people to achieve, by their measure, “a good death” – Smooth and timely transition of goals of care based on prognosis and preferences/values • Transition of goals from disease-focused care to comfort and allowing a peaceful death • Barriers: practical and psychological – Ambiguity and Ambivalence • Moving beyond advance directive: instructions for the very end of life – disease preparedness: navigating serious illness
- 19. Disease Preparedness • Disease-specific advance care planning • Prognosis is not just about mortality, it is about what to expect from illness
- 20. Patients are ambivalent about receiving prognostic information What percentage of patients want their doctor to be honest? • 100% What percentage of patients want their doctor to be optimistic? • 91% Kutner, 1999
- 21. Relationship Between Cancer Patients’ Prediction of Prognosis and Their Treatment Preferences • Prospective cohort study: SUPPORT Trial: Phase 1 and phase 2 • 917 patients with stage III-IV NSCLCa or colon ca with liver mets • Average 50% 6 month survival
- 22. Relationship Between Cancer Patients’ Prediction of Prognosis and Their Treatment Preferences Optimistic Pessimisti c JAMA. 1998;279(21):1709-1714. doi:10.1001/jama.279.21.1709
- 23. Relationship Between Patients’ Estimation of Prognosis and Their Treatment Preferences When doctors estimate a poor prognosis: Optimistic patients are 8.5 times more likely to favor aggressive life-extending therapy than those less optimistic JAMA. 1998;279(21):1709-1714. doi:10.1001/jama.279.21.1709
- 24. Prognosis Disclosure Intervention Failed • Understanding of prognosis effects EOL treatment preferences and did not effect survival – ie. More realistic understanding resulted in less non-beneficial aggressive care at EOL • Telling people their prognosis did not effect EOL treatment preferences • Intervention failed: – Not just telling people • Who? How?
- 25. Patient’s Expectations about Effects of Chemotherapy for Advanced Cancer: Inaccurate • CanCORS: 1193 patients with metastatic lung or colorectal cancer • Majority of patients did not understand that chemotherapy was not at all likely to cure their cancer – 69% of patients with metastatic lung cancer – 81% of patients with colorectal cancer Weeks JC et al. NEJM, 2012
- 26. Decision aid about prognosis with and with treatment for metastatic cancer did not improve understanding of terminal illness Despite an explicitly stating that current chemotherapy options for metastatic disease were not offered with curative intent, all patients reported that metastatic NSCLC was curable after reviewing the decision aid Leighl NB. Enhancing treatment decision-making: pilot study of a treatment decision aid in stage IV non-small cell lung cancer. Br J Cancer, 2008.
- 27. Understanding Prognosis… is more than just understanding information The only intervention that has been shown to impact patients understanding of prognosis was the Mass General trial on early palliative care for NSCLCa
- 28. Early palliative care improved understanding of prognosis and treatment intent • Randomized control trial of early palliative care vs standard onc care • 151 patient, single center trial • Intervention: referral to PC within weeks of diagnosis • Initial data review found: – Improved quality of life, lower rates of depression and even prolonged survival – Less use of aggressive therapies near the end of life • Baseline and longitudinal assessment of perception of prognosis and goals of cancer treatment Temel J et al. Early palliative care for patients with metastatic non-small cell lung cancer. NEJM, 2010 Temel J et al. Longitudinal perceptions of prognosis and goals of therapy in patients in metastatic non-small cell lung cancer: results of a randomizsed study of early palliative care. JCO, 2011
- 29. Baseline perceptions of prognosis and goals of treatment Accurate Understanding Temel J S et al. JCO 2011;29:2319-2326
- 30. Changes in perceptions of prognosis and goals of treatment Temel J S et al. JCO 2011;29:2319-2326 ©2011 by American Society of Clinical Oncology
- 31. End of Life Care Variable Standard Care N (%) or Median Early Palliative Care N (%) or Median pValue Aggressive care at EOL 30/56 (54%) 16/48 (33%) 0.05 Survival, median months 8.9 11.6 0.02 Received hospice care 41/66 (62%) 40/58 (69%) 0.46 Received hospice >7 days before death 22/65 (34%) 34/57 (60%) 0.006 Median days on hospice 9 (1-268) 24 (2-116) 0.01 Documented Resuscitation Preference 11 (28%) 18 (53%) 0.05
- 32. What is in the “palliative care syringe?” Aiding prognostic awareness – Cognitive and emotional processing – How people integrate knowledge that an illness is terminal and how that impacts treatment decisions Definition of Prognostic Awareness: A patient’s capacity to understand prognosis and the likely illness trajectory Jackson VA et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. JPM, 2013
- 33. Cultivating Prognostic Awareness • Communication model- expert opinion, not empirically tested • Foundation Principle: – Dr. Avery Weissman: “middle knowledge” – Denial is not sign of unhealthy coping, but rather a tool for patients to safely and slowly integrate reality of death over time – Patient move in and out of both denial and acceptance of impending death Jackson VA et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. JPM, 2013
- 34. Q: What about denial? That’s a powerful emotion, and it must make your job difficult. A: Denial has an important role in coping and living as best one can. Denial or disbelief is very common for anyone diagnosed with a life threatening condition and can be a helpful protective mechanism. Adjusting to difficult news is a process and with each passing day people are able to let in information that previously may have been too difficult to bear. As caregivers, it is important that we respond to people based on where they are in that process. -Barb Segal, RN, MS CNS Clinical nurse specialist in Palliative Care and one of five finalists for the national Compassionate Care Awards, sponsored by the Schwartz Center for Compassionate Healthcare 2013. FAHC ONE Newsletter interview.
- 35. Model of Coping with Serious Illness: a pendulum in which the patient's expressions swing through varying degrees of prognostic awareness Jackson VA et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. JPM, 2013
- 37. Advanced Care Planning • Mixed reviews about living wills • Strong evidence to support benefit of “in advance” end of life discussions • Redefining the “planning” in advanced care planning: a process more than a decision – Limited help in situation short of “terminally ill with no hope” – Difficult to predict treatment preferences in the future and state preferences for all possible events – – – – – – Think about types of health care decisions in the future Identify health care agent (DPOA-HC) Conversation with DPOA-HC regarding values Conditions under which goals of care would shift Establishing “leeway” Advise there is a time where CPR is not recommended Sudore RL. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Annals of internal medicine. 2010
- 38. Aiding Prognostic Awareness • Assess understanding of prognosis (your assessment, their assessment) • Present buy-in for discussing end of life planning- feel comfortable with “transition language” • Focus on goals and values over concrete decisions, in the beginning • Recognize disbelief as a barrier to end of life planning
Notes de l'éditeur
- Dartmouth Institute for Health Policy and Clinical Practice: The institute's largest policy product is the Dartmouth Atlas of Health Care, which documents unwarranted variation in the delivery of care in the American health care system. The Dartmouth Atlas Project has documented glaring variations in how medical resources are distributed and used in the United States. The project uses Medicare data to provide information and analysis about national, regional, and local markets, as well as hospitals and their affiliated physicians. This research has helped policymakers, the media, health care analysts and others improve their understanding of our health care system and forms the foundation for many of the ongoing efforts to improve health and health systems across America. For many cancer patients, medical and surgical care leads to long-term remission or cure. Other patients have aggressive or disseminated (metastatic) cancer at the time of diagnosis or experience a recurrence later in their illness. Despite achievements in cancer detection and treatment, half a million patients die of cancer annually in the United States. The majority of these deaths are in those over age 65. For patients with a poor prognosis because the cancer is advanced or disseminated, death is the likely short-term outcome. When a cure is unlikely, patients and families often have strong preferences about where and how they are cared for in their last months of life. Some desire aggressive treatment up to the time of death. These patients seek to gain weeks or months of additional life irrespective of treatment side effects and the isolation from home and family that aggressive treatment often entails. Other patients with limited life expectancy prefer care directed toward the quality rather than the quantity of life. They want to be able to bring closure to their lives with a focus on their comfort in familiar surroundings, close to family and friends. They also want control of pain and the many other difficult symptoms associated with advanced cancer and its aggressive treatment. Patients with cancer also want honest conversations with their providers. This includes balanced information about the chances of disease remission or progression, and the possible benefits and discomforts of different treatment options. Most importantly, they want to be active partners with clinicians in making the decisions about the type and place of care.
- ~ 29% of cancer patients who died during the period from 2003 to 2007 did so in a hospital. Cancer patients were most likely to die in a hospital in the Manhattan hospital referral region, where 46.7% experienced death in a hospital. This rate is about six times higher than the rate in the Mason City, Iowa region, where only 7.0% of cancer patients died in the hospital. Cancer patients were also much less likely to experience a hospitalized death in Cincinnati (17.8%) and Fort Lauderdale, Florida (19.6%). Cancer patients were most likely to be hospitalized during the last month of life in hospital referral regions in Michigan, including Detroit (70.2%). Rates were also high in the southernmost Texas regions (~69%). Less than half of cancer patients were hospitalized during the last month of life in Mason City, Iowa (44.9%), Nationally, 61.3% of cancer patients were hospitalized at least once during their last month of life.
- More than half of cancer patients died in the hospital among those receiving care at New York Methodist Hospital (54.9%) and Maimonides Medical Center (54.3%), both in Brooklyn. Other New York City hospitals had much lower rates of death in hospital among cancer patients, including St. Vincent’s Hospital (now closed) in Manhattan (30.4%) and Montefiore Medical Center in the Bronx (32.1%); however, even these rates were more than 60% higher than the rate at the lowest academic medical center, Evanston Northwestern Healthcare (18.7%) in Illinois. FAHC # of deaths among hospitalized cancer pts 166, percent of deaths in hospital 29.8% FAHC Percent of cancer patients admitted to hospital during the last month of life 61.9%, Hospital days per cancer patient during the last month of life 5.1 days
- ~ 24% of cancer patients were admitted to intensive care at least once during their last month of life. However, the percent admitted to intensive care varied more than sevenfold across hospital referral regions. More than 40% of cancer patients who died from 2003 to 2007 were admitted to intensive care during the last month of life in Huntsville, Alabama (42.4%), McAllen, Texas (41.0%), Los Angeles (40.3%) and Miami (40.3%). Only 6% of cancer patients were admitted to intensive care during the last month of life in Mason City, Iowa. Admission rates to intensive care were also low in Madison, Wisconsin (13.0%), Portland, Maine (14.3%) and Minneapolis (14.6%). Percent of cancer patients admitted to intensive care during the last month of life 13.8 %
- There was a marked degree of variation in the percent of cancer patients who died and received hospice care in the last month of life. This variation was high across both hospital referral regions and academic medical centers. Nationally, about 55% of cancer patients who died during the period from 2003 to 2007 used hospice services during their last month of life. However, cancer patients in some regions were more than three times more likely to be enrolled in hospice during the last month of life than patients in others. In Mason City, Iowa, 82.5% of cancer patients were enrolled in hospice during the last month of life. More than three quarters of cancer patients also used hospice services in Sun City, Arizona (79.9%) and Fort Myers, Florida (75.6%). By contrast, less than one quarter of cancer patients used hospice in the last month of life in the Bronx (21.0%) and Anchorage, Alaska (24.4%). Rates were also relatively low in Manhattan (31.3%) and Los Angeles (39.9%). Use of hospice services during the last month of life among cancer patients frequenting academic medical centers also varied nearly fourfold. More than 70% of cancer patients were enrolled in hospice during the last month of life among those receiving care at Monmouth Medical Center in Long Branch, New Jersey (73.0%), Evanston Northwestern Healthcare in Evanston, Illinois (72.1%) and the University Hospitals of Cleveland (70.6%). Less than 20% of cancer patients used hospice services during the last month of life at Westchester Medical Center in Valhalla, New York (18.6%) and Montefiore Medical Center in the Bronx (18.6%). FAHC Percent of cancer patients enrolled in hospice during the last month of life 46.6 % FAHC Average # of hospice days 6.7 days For elderly patients with serious illness and a life expectancy of six months or less, Medicare benefits include hospice services. Hospice care is directed toward comfort and support services that allow patients to live out their lives to the fullest extent possible. Whenever possible, care is provided in the home, and includes palliative services to control symptoms, home care services, and family support prior to and after the death of the patient. Patients choose to enroll in hospice, and they may withdraw from hospice care at any time. Hospice care has gained increasing recognition as a valuable way to improve the quality of life for patients with poor prognosis cancer. Still, in many places, the fight for a cancer cure or remission can crowd out discussions with patients about the full range of available treatments, including palliative and hospice care. Concluding thoughts There is no greater challenge to patients, families and caregivers than when, against every hope and medical effort, illness worsens and death is imminent within weeks or months. Cancer patients, in particular, usually recognize the seriousness of their illness at the initial diagnosis and join with their doctors and nurses in the fight for a cure. Inability to achieve a cure is often felt to be a failure, and discussions of palliative and hospice care can sometimes be perceived as “giving up” by patients, families and clinicians. Discussions of end-of-life care are often polarized, framing patients’ choices as cure versus care, hospital versus hospice, and life versus death. This black and white view of the course of cancer and its care, whether it is embraced or simply followed as the local norm of care, is a disservice to patients whose wish is to live, but also to live well. Living well has a different meaning for each patient, and it is the responsibility of clinicians and health care systems to help patients articulate their goals for living and for their medical care, whether the expectation is to live for years or for a few months or weeks. The patterns of end-of-life cancer care presented in this report are partly the expression of patient preferences, but much more of local approaches to care and patterns of practice. As well-intentioned as this care may be, in many hospitals and regions it reflects false assumptions about patient wishes, the difficulty of having serious conversations about end-of-life issues, and—at times—a failure to listen to the actual hopes and fears of patients and their families. Many patients find little opportunity to explore these preferences as the clinical team “fights” the battle against an illness that has no cure. The slow pace of adoption of early palliative care for patients with serious cancer is a tragic underservice of health care, leading to much unnecessary suffering. Progress has been made in palliative and hospice care in the past decades, but there remains more work to be done. It may help both patients and clinicians to recognize that achieving both the longest and the most functional life is not a simple choice between curative and palliative or hospice care.22 Palliative care early in the course of cancer illness can reduce discomfort from the disease and from curative treatments, and also legitimize the discussion of quality of life. For patients with poor prognosis disease, palliative and hospice care can actually prolong life, even as they improve its quality.23-25 This Atlas report provides patients, clinicians, and health planners a guide to the regions and academic medical centers providing less intensive hospital care and higher levels of hospice services and to the places where further improvements in end-of life care are needed.
- Cancer Care Outcomes Research and Surveillance Consortium Population and health system based prospective cohort study 15-month study period, pts survived at least 1 month. Nearly half of pts received at least 1 marker of aggressive EOL care.
- Information collected based on interviews and clinic charts
- 73 % had documented EOL discussion from at least 1 source. Many EOL discussions occur in hospital with providers other than primary team.
- Prospective longitudinal cohort study
- Prospective longitudinal cohort study
- Prospective longitudinal cohort study
- Prospective longitudinal cohort study
- Prospective longitudinal cohort study QOL: included self-reported health and increased role limitations High pt QOL associated with better caregiver outcomes (overall QOL, self-reported health, physical functioning and mental health.
- VJ story – pt want MD to be totally truthful and always hopeful
- Pessimists are more accurate than optomisic folks
- Followed prospectively over time Prior studies have shown that oncologist tell patients that their disease is incurable and intent of chemotherapy but a substantial proprotion still belive that there is a chance of cure with therapy
- Even when presented with accurate information about their diagnoses, patients with advanced cancer frequently retain inaccurate perceptions of their illness
- Prior to this, no trial that shown any benefit from interventions designed to clarify perceptions of prognosis among patients with cancer
- Baseline perceptions of prognosis and goals of treatment. (A) Results of the 145 patients who responded to the question, “My cancer is curable (yes/no).” (B) Results of the 124 patients who responded to the question, “The goal of my therapy is to get rid of all of my cancer (yes/no).” (C) Results of the 121 patients who responded to both questions. tx, therapy.
- First clinical trial to demonstrate improvements in illness perceptsions- patietns referred to early palliative care were more likley to retain or develop accurate view of their prognosis Changes in perceptions of prognosis and goals of treatment. (A) Of the 104 participants with completed self-report assessments across a minimum of two study time points, those assigned to early palliative care were more likely than those receiving standard care to remain or become accurate in their perceptions that their cancers were not curable (early palliative care, 47 [82.5%] of 57 patients; standard care, 28 [59.6%] of 47 patients; Fisher's exact test for comparison, P = .02). (B) Of the 92 participants with completed self-report assessments across a minimum of two study time points, a greater percentage of patients assigned to early palliative care remained or became accurate in their belief that a goal of therapy was not to get rid of all the cancer, though the difference was not significant (early palliative care, 21 [43.8%] of 48 patients; standard care, 14 [31.8%] of 44 patients; Fisher's exact test for comparison, P = .29).
- Less nonbeneficial aggressive therapies at the EOL ,longer stay on hospice , without decreasing longveity- even lived longer. chemotherapy within 14 days before death, no hospice care, or admission to hospice 3 days or less before death.
- Unlike the Kubler Ross model of coping with terminal illness, where patients move through stages of grief, starting with denial and ending with acceptance, his model Sometimes in the same coversation