Navigating the ‘Health Care System’

1. Navigating the ‘Health Care System’ Jonathan M. Evans MD MPH Chief, Geriatric and Palliative Medicine University of Virginia

2. Goals • Discuss health care delivery in The United States • Discuss strategies to help you get better care • Discuss strategies to help you retain some power and control of your life while in health care settings

3. What is a health care system? • Integrated system whereby a person receives all of the care they need to meet their healthcare needs, promote health and wellbeing, improve quality of life • Patient-centered Care provided in a coordinated manner among all of the clinicians involved, working together as a team • Requires careful planning, oversight, cooperation, communication among knowledgeable, motivated participants

4. What’s wrong with our health care system? • We don’t have one • Disparate pieces • Problems with access, availability of care quality, care coordination, oversight, service, communication, education, cost, ignorance, inadequate number and quality of staff • Lack of capacity • Little accountability • Nobody in charge • No planning based upon patient care needs • Problems with mission • Conflicting priorities, goals • Loss of power and control • Overtreatment and undertreatment, often simultaneously • Needed care, patients themselves are changing • ‘One Size Fits All’

5. Fragmented care • Across your body • Medical specialization by body part • Roles, responsibility divided among many individuals, disciplines • Across town • Care of a single episode of illness fragmented across multiple sites, multiple providers within each site • Medical specialization by site of care (ER, ICU, Hospital, Office, Nursing Home)

6. Care Sites • Office (ambulatory clinic) • Acute Care Hospital • Specialty Hospitals • Acute Inpatient Rehabilitation Hospital • Long-term Acute Care Hospital (LTACH) • Skilled Nursing Facility • Intermediate Care Facility • Home Health • Assisted Living Facility • Continuous Care Retirement Community (CCRC)

7. Licensed Care Providers • Physicians • Physician assistants • Nurse practitioners, advance practice nurses • Registered Nurses • Licensed practical (vocational) Nurses • Nursing Assistants/ Personal Care attendants • Physical, occupational, speech therapists • Therapy assistants • Psychologists • Licensed Clinical Social Workers

8. An Episode of Acute Care • Prior to 1989 • Hospitalization for entire episode from onset to resolution • Hospitals paid by the day for room and board, nursing care and supplies • hospital was only site for intravenous therapy, most diagnostic testing • After 1989 • Care of illness across multiple settings • Hospitals paid by the diagnosis • Lump sum payment to hospital regardless of length of stay • Hospital length of stay much shorter • Hospitalization only after other treatment has failed • Discharge from hospital prior to complete resolution • Home health care or post hospital placement usually necessary • Hospitals still paid separately for diagnostic tests, procedures

9. Health Care Economics • Expensive, labor intensive • Shortage of trained professionals in all disciplines • 800,000 more nurses needed now • Shift toward lower cost workers with less training • Emphasis on maximizing efficiency, productivity limits access, availability of care at all sites • Focus on technology, procedures rather than knowledge, skill, listening, observing, thinking • Mismatch between economics (market forces) and patient needs creates conflicts of interest • Quality, availability, and low cost of care at odds with one another

10. Changing Health • Life expectancy has increased by 40+ years over last century • Preventive health, public safety, sanitation, nutrition biggest contributors • Advances in medical care have transformed once fatal illnesses into chronic diseases • Health care system (hospitals and medical offices) designed around care of a single (acute) problem in isolation • Complaint-based system • Population of patients now has multiple chronic conditions/concerns simultaneously • Exponential increase in prescription drug use (50% increase between 2003-2006) • Hospitalization now for acute exacerbation of chronic illness (diagnosis already known prior to admission) • ‘System’ developed for different problems/different patients than exist today

11. Factors contributing to current crisis • Aging, obsolescent infrastructure • Changing health • Health Care Culture, attitudes • Greed • Ignorance- inadequate education, continuing education • Labor shortages • Financial incentives, disincentives (Medicare, insurors) • Business models- market failures • Access to technology

12. Strategies to help you get better care • Make your goals and needs known • Teach others about you • Complaint based system you must ask for what you want • Be knowledgeable • Be involved • Take control of your health- learn as much as you can • Keep copies of important health care records, including diagnoses, medication lists • Know what your medications are for, and read about side effects, interactions (pharmacist) • Know what you are entitled to (Medicare) • You need advocates (many)

13. Advocacy • Primary care provider • Other members of care team • Family Members, Friends • Medicare • JABA • Don’t leave until you are ready! • Social Services/Adult Protective Services • Attorneys • Private care managers

14. Choosing health care providers • Check them out in advance-Do your homework • Ask people you know • Look on internet • Area Agency on Aging/JABA • Think about what you want and need in a doctor • Interview your prospective doctor • Don’t be fooled by titles • Visit sites of care before you need them (hospital, nursing home)

15. Receiving Health Care • Prepare in advance for office visits, hospitalization • Write down questions, concerns, goals, priorities • Make lists • Bring someone with you • Take notes • Write down everyone’s name • Make sure you understand what’s going on before you leave • Ask about next steps • Don’t leave until you are ready! • Discuss visit with people you trust • Read about relevant health issues (internet, libraries, medical letters)

16. Hospitalization • Potentially the most dangerous health care experience you can have • The ‘system’ at its worst • The stakes are high due to severity of illness • Drug prescribing in older patients • Debility caused by bedrest, immobility • Lack of information • Lack of power and control • Delirium likely in >50% of patients 65+ • Patients discharged ‘sicker and quicker’

17. Hospitalization • Have someone with you • Personalize your care • Know who everyone is: Name, title, role (keep a log book) • Make sure they know who you are • Participate actively • Ask questions about everything (especially meds) • Avoid sedatives/sleeping pills • Stay out of bed as much as possible • Demand the help you need • Don’t leave until you are ready! • Take control over post-discharge plans • Get written info before you leave • Call your primary doctor while in hospital

18. Strategies to Maintain Power and Control • Plan ahead to anticipate, prevent problems, pitfalls • Educate yourself about your rights, entitlements, resources • Keep your wits about you • Have an advocate with you • Make yourself known and understood • Show people the person that you are • Personalize others (refer by name) • Don’t let people stand over you • Identify advocates among care ‘team’ • Ask regularly about prognosis, plans • Make people explain things to you • Control your environment, schedules • Ask for help from people you trust

19. Summary and Conclusions • Health care delivery is fragmented, incomplete, often unsatisfying and sometimes harmful • You deserve the best health and best care possible • You have to stay well informed, participate actively, and get others involved whom you trust • Ask for what you want • Understand your insurance coverage, how providers get paid • Take full advantage of community and other resources • Be involved in advocacy, voting, civic affairs • Talk with everyone you know about health, health care