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Palliative Care and Hospice in Health Care Reform: More Essential than Ever Before Allan Ramsay, MD Green Mountain Care Board [email protected] www.gmcboard.vermont.gov VERM ONT HEALTH REFORM Objectives Understand why improving primary care and palliative/hospice care are integral to the success of health care reform, here and everywhere Review communication skills necessary for discussing prognosis in life limiting conditions- a “primary” palliative care skill (CHF and ESRD) Identify issues that could lead to improved utilization of palliative/hospice care in Vermont Most importantly to encourage you- yours is the best possible care! VERM ONT HEALTH REFORM 7/21/2015 2 Why did I apply to be on the GMCB? There are limitations within the academic and tertiary care model to do the right thing and drive social change I was disgusted with the cynical and outrageous rhetoric about “death panels” that arose during the ACA debate I hoped I could nudge primary and palliative/hospice care policy wherever possible This is the right place: Vermonters care about each other, trust each other, and can adapt to change VERM ONT HEALTH REFORM Myths surrounding palliative and hospice care To the best of your knowledge, would you say the new law does or does not allow a government panel to make decisions about end‐of‐life care for people on Medicare? Don't know 17% Yes, law does this 36% No, law does not do this 48% NOTE: Percentages do not sum to 100 percent due to rounding. SOURCE: Kaiser Family Foundation Health Tracking Polls, July 2010. VERM ONT HEALTH REFORM Why is palliative care important to health care reform? >95% of all health care spending is for the chronically ill 63% of all Medicare spending goes to the 10% of beneficiaries with 5 or more chronic conditions Despite high spending, there is evidence of poor quality of care and lack of integrated care VERM ONT HEALTH REFORM Target Population for Palliative Care Distribution of Total Medicare Beneficiaries and Spending, 2005 37% Average per capita Medicare spending (FFS only): $7,064 90% 63% Average per capita Medicare spending among top 10% (FFS only): $44,220 10% Total Number of FFS Beneficiaries: 37.5 million Total Medicare Spending: $265 billion NOTE: FFS is fee-for-service. Includes noninstitutionalized and institutionalized Medicare FFS beneficiaries, excluding Medicare managed care enrollees. VERM ONT HEALTH REFORM What is the best possible care of those with life limiting conditions? Primary Care (always) Specialty Palliative Care Care Hospice (often) (most times) VERM ONT HEALTH REFORM 7/21/2015 7 Implications for Health Care Reform from a Small Town in Colorado Provides high quality, low cost care despite a high-risk patient population. Seven critical success factors: 1. Primary care physicians are in control 2. Clinicians are paid for quality not quantity via risk sharing 3. All-payer rate standardization 4. Regionalization of costly services 5. Limits on supply/capacity for costly services 6. Primary physicians follow their patients in the hospital 7. There are well integrated palliative care and hospice services Bodenheimer T, West D. Low cost lessons from Grand Junction, Colorado NEJM 2010; 363:1391-93. VERM ONT HEALTH REFORM How do palliative care and hospice affect the cost drivers of medical care? Both counter the financial disincentives that prevent communication about achievable goals Both can remediate the lack of training most clinicians have related to the true needs of the seriously ill, including symptoms, communication, coordinated transitions Both compensate for lack of primary coordinated care for the patient with advanced illness/multiple chronic conditions Both address the perpetual lack of communication Palliative care and hospice can compensate for the fact that, much of the time, no-one is in charge! VERM ONT HEALTH REFORM Cost implications of hospital based palliative care Estimated Benefits Low Medium High Patient cases (% of discharges) 2% 4% 6% Patient cases (cases/year) 405 809 1214 Savings due to reductions in direct costs/case $1,196,216 $2,392,432 $3,588,648 Intervention cost/case ($550) ($356) ($356) Costs of intervention net of revenues ($222,571) ($288,128) ($432,192) Increase in net income $973,645 $2,104,304 $3,156,457 300 Bed Hospital Example Using CAPC-PCLC Study Results. Higher estimates for the low scenario represent less efficiency due to scale and also variations in revenue Source: Siu et al. Health Affairs, 2009 VERM ONT HEALTH REFORM Workforce: the #1 major barrier to access (how do you solve this-simple: financial incentives) Oncologists: 1 for every 145 patients with new cancer diagnosis Cardiologists: 1 for every 71 heart attack victims Palliative Medicine: 1 for every 1,200 people with serious advanced illness Vermont has fewer than 12 FTE certified palliative care physicians for 650,000 residents (12 hospitals) Twenty states including Vermont have no access to post graduate training in palliative medicine VERM ONT HEALTH REFORM The message is the other barrier to more widespread use of palliative care (Public Opinion Research, CAPC, 2011) Studies suggest the palliative care message has not been clear and this no doubt effects utilization. Patients do understand the value of palliative care, physicians have greater difficulty with the concept that palliative care is not just for the actively dying. The message to colleagues, patients, policy makers and the public: Palliative care is about matching the treatment plan to the patient goals. VERM ONT HEALTH REFORM 7/21/2015 12 MR is a 95 year old active woman with long standing HBP, CHF, and CRI (Creat2.5). She has discussed dialysis as a future event with her primary physician and decided she would not want this intervention. MR has an NSTEMI, goes to the cath lab for a stent, and returns home with pain relieved 5 days later she is re-admitted with acute dyspnea, CHF, and creatinine is 5.8. Cardiology/nephrology recommend dialysis First session leads to hypotension and acute ischemic pain in the right leg 10 days later she develops gangrene in the leg which leads to amputation Family requests a palliative care consultation to assist with pain control VERM ONT HEALTH REFORM 7/21/2015 13 What do you think when you are considering end of life care for CHF? 1. Many of my specialist colleagues believe palliative care means stopping all cardiac meds so they resist my involvement. True or false 2. Specialists seem overly optimistic about the benefits of ‘bridge” therapies for CHF because they see them work in the hospital setting (inotropic agents, diuretic infusions, BiPap, CPR). True or false 3. It is so difficult to determine prognosis in patients with CHF that a hospice referral is rarely appropriate for end of life care. True or false VERM ONT HEALTH REFORM Prognostic Uncertainty in CHF (Circulation 2009;120:2597-2606) Accurate prognostication is difficult in CHF This uncertainty can provide a basis for initiating end-of-life discussions: – Advance care planning – Educating patients and families about the unpredictable, but usually terminal nature of CHF (danger of sudden death) – Ascertaining specific goals of care People are almost never upset when they have planned ahead and outlived our predictions! VERM ONT HEALTH REFORM How do cardiologists do with prognosis? VERM ONT HEALTH REFORM Jackson, Vicki. Medicine Grand Rounds 2010. VERM ONT HEALTH REFORM Coping and Denial Denial can be adaptive or maladaptive – Adaptive denial allows us to deal with acute psychological stress until we can process and mobilize coping strategies – Maladaptive denial: inhibits coping and decision making Middle knowledge of death- “partial awareness and partial denial” People in this middle knowledge place are vulnerable to different providers giving them get different viewpoints on prognostic awareness and acceptance. Block, Susan. Psychological issues in End-of-life Care. Journal of Palliative Medicine 2006. Langner, Thomas. Choices for Living: Coping With Fear of Dying. 2002 VERM ONT HEALTH REFORM Do patients with CHF have pain? (J Pain Symptom Manage 35;594) (Eur J Cardiovas Nurs 2003;213) Multiple studies of symptom burden in patients with late stage CHF have shown a pain prevalence of 33-67% Comparisons of pain reports between NSCLC and CHF patients show a similar incidence Edema (anasarca), ascites, ischemic bowel, arthralgia, arthritis, pleuritic pain from effusions. These misconceptions lead to undertreatment and significant EOL suffering VERM ONT HEALTH REFORM Inotropic Therapy for CHF (J Card Failure 2010;16(6):475) Dobutamine (beta receptor agonist) is being used more aggressively for relief of symptoms in late stage CHF Some home care infusion companies will provide dobutamine without proof of benefit with invasive cardiac testing Mortality is high in patients on chronic inotropic therapy (> 50% at six months) Cost is high, even with reduction in hospital days Patients being considered for chronic inotropic therapy should have a palliative care consult VERM ONT HEALTH REFORM CPR and CHF (NEJM 2009;361:22) CPR studied from 1992 to 2005 in a national Medicare data base (433,985 pts) – 18 % pts survived to d/c- no diff over time – Fewer surviving pts were discharged home – A gradual increase occurred in the # of pts who had CPR prior to dying in the hosp Informed Assent (“It’s not really your choice”) – All providers agree that CPR would not lead to restoration of meaningful life- is not indicated – Patient/family have the right to disagree VERM ONT HEALTH REFORM VERM ONT HEALTH REFORM A Palliative Care………………….Cardiology conversation MR’s CHF has worsened even with optimal disease directed therapy Maybe we could balance her disease directed therapy with more attention to symptom directed therapy as well I think we can control her pain and nighttime dyspnea with better medical management. We can titrate hydromorphone to control her pain, it has less risk in ESRD. That is our purpose of balancing disease directed and symptom directed treatment near the end of life. I don’t think it is time for palliative care yet, she is not ready to give up What do you mean, stopping her dialysis, she is not ready for that. I don’t want her to get confused by being on a lot or morphine. That will also effect her blood pressure. I guess that makes sense. I just worry about how bringing up palliative care or hospice will make her feel hopeless. VERM ONT HEALTH REFORM 7/21/2015 23 The patient perceived presence of an… End of life discussion? Multiple studies show there is no association with harm Studies also show a positive association with: – Better QOL at the EOL – Less use of aggressive therapies at EOL – Better caregiver bereavement outcomes We clinicians think we have more “power” to take away hope than we actually do, often because we have not learned the right language of hope. VERM ONT HEALTH REFORM Our non-integrated system has lead us to become dependent on achieving only medical goals of care The next test, the next treatment, the single goal of life prolongation at all costs Patients have a different set of goals It takes time and effort to understand the patient/family goals That is the essence of excellent palliative care Patient-centered care demands that the patient is in charge and we are the servants VERM ONT HEALTH REFORM 7/21/2015 25 MR had been in the hospital for 5 weeks when the palliative care consultation occurred Hydromorphone was given before and after dialysis treatment to relieve ischemic pain. This had been withheld because there was concern for “monitoring” mental status changes during dialysis. Palliative care conducted a family meeting to discuss goals. “Have you considered things you would want or not want if things don’t go as planned.” Decision was made to not allow CPR if cardiac arrest occurs during the hospitalization. Patient and family will consider how long they would want post-operative life supporting therapies if further surgical procedures are planned. Cardiology and nephrology were unable to attend the family meeting but agreed with the changes in the plan of care. VERM ONT HEALTH REFORM 7/21/2015 26 Palliative Care Service performance measures (J Pall Med 2009;12:609) Timely completion of consultation Documentation of patient status (prognosis, functional status, psychosocial issues, spiritual issues with a plan for addressing these) Goals of care (planned family meeting if necessary) Overall level of physical comfort Facilitation of system to address goals Patient and family satisfaction VERM ONT HEALTH REFORM 7/21/2015 27 New Delivery and Payment Models when true health care reform is implemented…. Delivery system re-design is targeted to the highest-risk populations-- those with advanced disease and/or multiple chronic conditions and functional impairment-- will be key to success at improving quality and reducing cost. Who has the training and skills- I would argue that better integration of primary, palliative, and specialty care is the first step. Who has already demonstrated quality and cost impact for this population? (palliative care) (Policy) Goal: Add palliative care to the eligibility/specifications/metrics for medical homes, accountable care organizations, and bundling strategies. VERM ONT HEALTH REFORM The Palliative Care “Delivery System” Primary palliative care (outpatient PCMH or inpatient) – Giving bad news and discussing prognosis – Advanced care planning – COLST Tertiary Palliative Care (usually inpatient delivery) – Complicated symptom management – Multidisciplinary intervention during acute illness – Goals of care discussions about burdensome life supporting therapies We need to assure a smooth transition from palliative care to end of life care (Hospice) to achieve the best outcomes VERM ONT HEALTH REFORM 29 What happens next for M.R.? MR is transferred to SAR and readmitted 5d later for low BP during dialysis MR tells her family she only wants to go home and live to see the birth of her next great-granddaughter Palliative care recommends referral to the local home hospice program VERM ONT HEALTH REFORM 7/21/2015 30 The Hospice message is clear– except does everyone understand all it’s benefits? Hospice associated with highest family satisfaction among last places of care: 71% rated excellent vs. 47% hospital, 42% NH, 47% home care Teno JM et al. JAMA 2004;291:88-93. Hospice associated with longer survival (+ 81 days CHF; + 39 days lung cancer; + 21 days pancreatic cancer; no difference colon, breast, prostate cancers) Connor SR et al. JPSM 2007;33:238-46. VERM ONT HEALTH REFORM The conceptual shift of palliative care to hospice care Life Prolonging Care Life Prolonging Care Medicare Hospice Benefit Hospice Care Old New Palliative Care Dx Death VERM ONT HEALTH REFORM 32 60% 50% 0% Arizona 1 Utah 2 Florida 3 Delaware 4 Iowa 5 Oregon 6 Colorado 7 Rhode Island 8 Michigan 9 Kansas 10 Ohio 11 Texas 12 Georgia 13 New Mexico 14 Nebraska 15 Nevada 16 Wisconsin 17 Idaho 18 Missouri 19 Minnesota 20 National Washington 21 Pennslyvania 22 Illinois 23 South Carolina 24 New Jersey 25 New Hamshire 26 North Carolina 27 Maine 28 Louisiana 29 Alabama 30 Massachusetts 31 California 32 Connecticut 33 Indiana 34 Oklahoma 35 Tennessee 36 Maryland 37 Montana 38 Virginia 39 West Virginia 40 Arkansas 41 Kentucky 42 South Dakota 43 Mississippi 44 Hawaii 45 District of Columbia 46 North Dakota 47 Vermont 48 New York 49 Wyoming 50 Alaska 51 We need to improve our system of hospice referrals! (Medicare Hospice Deaths / Total Medicare Deaths) National: 39.6% VT #48: 25.6% 40% 30% 20% 10% (Hospice Analytics Market Report) VERM ONT HEALTH REFORM Clinical Guidelines for starting/stopping dialysis (National Renal Physicians Association) Physicians should conduct advance care planning prior to starting dialysis – Medicare pays for six “educational” sessions prior to starting dialysis however there is no requirement for ACP Consider forgoing dialysis for: – People over 75 with life limiting co-morbid conditions – Significantly impaired functional status – Severe chronic malnutrition VERM ONT HEALTH REFORM 7/21/2015 34 The likely outcome of MR’s treatment plan compared to if she had a cancer diagnosis (Arch Int Med 2012: April 23) VERM ONT HEALTH REFORM 7/21/2015 35 M.R. speaks with……………....her family physician I want to go home on hospice and not come back to the hospital, is that ok? Can I continue dialysis until my great granddaughter is born? When I stop dialysis how will things go for me? Thank you for being here for me. I believe that is a very good plan, you have been through a lot. We can admit you to hospice however continuing dialysis will become more of a burden. Making plans with your family about when to stop is important. At some point after your GGD has taken her new breaths, we will be sure your breaths are gentle and lead you to lasting peace. VERM ONT HEALTH REFORM 7/21/2015 36 Guess what- Vermont may be the birthplace of meaningful health care reform! Palliative care and hospice should be at the heart of this effort Palliative care- have a strong message about the ability of palliative care to improve quality and reduce costs. Hospice- support a bill to extend hospice to those with a 1 year median prognosis and let’s resurrect open access. We can’t let our backbone be just a wishbone…. VERM ONT HEALTH REFORM The first driver of policy change: Showing Up There must be effective lobbying by membership organizations + their individual members Develop relationships with your key local legislators A unified voice is crucial– Submit public comments when asked – Come to the Statehouse if a bill is being debated (only one in the nation without a metal detector- I think) – Use social media for engagement or to mobilize Remember- our issue is bipartisan VERM ONT HEALTH REFORM Questions and Comments In an attempt to display competency or undying love, we lose sight of the double-edged nature of our cutting-edge wizardry. We battle away until the last precious hours of life, believing that cure is the only goal. We inflict misguided treatments on not just others but ourselves. During these final, tortured moments it is as if the promise of the nineteenth century has become the curse of the twenty-first. from: Final Exam: A Surgeon’s Reflections on Morality Pauline Chen, MD VERM ONT HEALTH REFORM