How to Care for Aging Parents Thomas Cornwell, MD

1. How to Care for Aging Parents Thomas Cornwell, MD

2. 1900 average life expectancy 47, families close together, most women are stay at home caregivers; 2013 average life expectancy 78.2, families dispersed, women in the work force In past people had short period of illness and infirmity and then death. Now they grow old, frail, and need almost constant care not for days/weeks but for months/years. People use to need a hot meal and loving attention, now they need catheter care, oxygen, tube feeding, vitals taken and eight different medications The average caregiver (if there is such a thing) devotes twenty hours per week for five years January 1, 2011 the first of 76 million baby boomers will turn sixty-five. 10,000 new Medicare beneficiaries daily. Why an issue now?

3. Sandwich Generation • Nearly half (47%) of adults in their 40s and 50s have a parent age 65 or older and are either raising a young child or financially supporting a grown child (age 18 or older). And about one-in-seven middle-aged adults (15%) is providing financial support to both an aging parent and a child. http://www.pewsocialtrends.org/2013/01/30/the-sandwich-generation

4. Talk, Talk, Talk • Parents needs and concerns: Parenting your parent (Geriatric un-development) • Housing options (now and future) • Financial and legal • Health care • Death and funeral (“Honoring ceremony) Start with areas of agreement. Try and have entire family on the same page in regards to patient goals and everyone’s responsibility. Avoid highly charged and emotional words. Goal is to end all discussions peacefully and not to seek victory.

5. Housing Options • Accessory (In-law) apartments • Shared and congregate housing • Shared apartments • Assisted living • Life Care Retirement Communities • Nursing Homes • Live-in Caregivers Try to discuss and plan before a crisis occurs. What are the options if (when) you or your loved one declines?

6. Legal Issues • Living will, durable power of attorney for health care and finances, advanced directives, “Do not resuscitate form” or “POLST (Physician Orders for Life Sustaining Treatment) form” (required in Illinois for paramedics), last will and testimony • National Academy of Elder Law Attorneys www.naela.com (602-881-4005)

7. Caring for the Caregiver • Set limits: Learn to say no, determine what is truly necessary • Accept and enlist help • The Family and Medical Leave Act: 12 weeks of unpaid leave to care for family member • Emotional minefields: Guilt and helplessness • Maintain your physical, emotional and spiritual life

8. Medical Care • Preventative care: Yearly flu shot, Pneumonia shot (once (or twice 5 years apart) after age 65), Tetanus shot every 10 years, balanced diet, exercise, Multivitamin, stop smoking, Osteoporosis screening • Doctor: “Avoid Ageism.” “Old age” is diagnosis of last resort. Bring all medication including OTC medications to visit. Bring list of concerns. Consider Comprehensive Geriatric Assessment. • Yearly eye and dental exam. Audiologist if hearing problem. • Medical Alert System: (e.g. Lifeline, Medical Alert)

9. Medical Care • Medications: The less the better balanced with “if it ain’t broke, don’t fix it.” • Ways to save money: • Ask pharmacist (not the doctor) if generic equivalent or larger pill that can be broken in half. • Pharmaceutical discount cards or indigent programs.

10. Common Medical Problems • Falls: Most common in bathroom. Consider raised toilet seat with bars, bath chair that extends outside tub, grab bars. Other rooms—remove throw rugs and clutter and increase lighting. • Pressure sore prevention: avoid same position >2 hours, pressure reducing surfaces on hospital bed/wheel chairs, no donut cushion, reduce friction. • Depression: very common in elderly, can “make everything worse.” Signs: depressed mood, anger, anxiety, decreased motivation, anhedonia (no longer enjoys anything), loss of appetite, trouble sleeping. Cannot “attitude it” away.

11. Common Medical Problems: Dementia • Dementia: Descriptive diagnosis of abnormal memory loss and cognitive functioning. Most common is Alzheimer’s Disease (65-75% of dementia). Definitive diagnosis currently only at autopsy (need brain tissue viewed with microscope). • Greatest problem is short term memory loss often not realized by patient (and sometimes family). • Agitation can be a major problem. Three communication rules: 1. Speak in a slow, calm voice, 2. They are “always” right, 3. Try redirecting when they are upset—they can only focus on one thing at a time (I use food to try and redirect their upset)

12. Common Medical Problems: Dementia • They use “cues” in their environment to orient themselves and caregivers can take advantage of this (e.g. lay out pajamas when it is time to go to sleep) • Help to orient them: Calendars, dry-erase boards to leave messages, people should introduce themselves and not ask,” Do you remember who I am?” • Consider neuropsychiatric testing for more definitive diagnosis and coping strategies

13. Medical Care: Hospitalization • Elderly need to have an advocate: need to watch what is going on and keep the patient as active as possible (get them walking as soon as possible) • Discharge planning begins day one of hospitalization: Is going home an option? Will rehabilitation be necessary/helpful (Medicare covers rehabilitation in a skilled nursing facility if the patient was hospitalized for three midnights and if therapy/further skilled treatment will benefit the patient)?

14. Medical Care • Medicare/Medicaid intermittent home health: Must be homebound (a taxing effort to leave the house and leaving the house is infrequent (e.g. doctor visits/church/adult daycare)) and must have a skilled need requiring a nurse, physical therapist or speech therapist. If meet above criteria can also get occupational therapy, social worker and aide if needed. Medicare and Medicaid do not pay for home health when only custodial care is needed.

15. Quality vs. Crisis End of Life Care The death of a loved one will always be sorrowful but it does not need to be a crisis. It tends to be a crisis in our country because we avoid talking about it and planning for it. Dr. Thomas Cornwell

16. End-of-Life Care • “To whatever extent you are able, acknowledge this dying process and, is so doing, celebrate life.” • Start communicating preferably before he/she is sick • Responses to a terminal diagnosis: Denial, Anger, Bargaining, Depression, Acceptance • Greatest fear of terminally ill: Suffering and abandonment—not death • Hospice care: life expectancy less than 6 months and patient does not desire aggressive curative care but does want aggressive comfort care

17. Communication is Key • Hospice: Hospice is a two way evaluation. Hospice evaluates if the patient meets Medicare criteria and the patient/family evaluates if they would benefit from hospice. The evaluation does not obligate either party to hospice starting—it just ensures that everyone is educated on their options. Patients/Families need to know their options:

18. Hospice is an interdisciplinary home health service for patients whose prognosis is less than six months. Doctors and patients are poor at predicting when end-of-life will occur which leads to 10% of hospice patients dying on day one and over 50% dying in the first two weeks. Hospice’s value is lessened if length of service is less than two weeks. A good question to ask is, “Would you be surprised if the patient passed away in the next six months?” Hospice can continue for longer than six months if the patient’s condition warrants. Communication is Key

19. Communication is Key • DNR (DNAR)/POLST • Hospitalization • Ventilator • Tube Feedings • Dialysis • Antibiotics • Preferred site of death Patients/Families need to know their options:

20. FIVE WISHES • The person I want to make care decisions for me when I can’t • The kind of medical treatment I want or Don’t want • How comfortable I want to be • How I want people to treat me • What I want my loved ones to know

21. FIVE WISHES WISH 1 The Person I Want to Make Health Care Decisions for Me When I Can’t Make Them for Myself

22. Picking the Right Person to Be Your Health Care Agent • Knows you well • Can make difficult decisions • Will stand up and advocate for you • Lives nearby • Must be 18 years old • Should not be your health care provider, employee of health care provider

23. Communicate Your Wishes With Your Health Care Agent • What level of medical care is desired and for how long (Tube feedings, Ventilator Care, Hospitalization) • What level of Psychiatric care (Medication, Hospitalization, Electro-convulsive shock treatment) • Release of Medical Records • Organ Donation • Review financial information to apply for/fill out insurance forms • Desired location to spend your last days/hours (hospital, nursing home, home)

24. Completing FIVE WISHES • Sign and fill in demographic information • Have two witnesses sign (note the written requirements for the witnesses) • No Notarization required in Illinois • Distribute copies and discuss with POAHC, family, medical provider, nursing home, assisted living facility, etc. • Fill in Five Wishes Wallet Card and keep it with you to notify people where to locate the document

25. DNR (Do Not (Attempt) Resuscitation)/POLST Form • ONLY Document paramedics can accept to not do CPR (cardiopulmonary resuscitation) • Must be signed by patient, guardian, POA or healthcare surrogate • Must have a witness • Must be signed by a doctor • State of Illinois transitioning to POLST (Physician Orders for Life Sustaining Treatment) Form

26. The “Honoring” Ceremony If you really want to honor your parents at their 50th wedding anniversary it would be hard to do a good job with only 3-4 days to prepare. We often do this for our loved ones at the end of life. Their funeral/memorial service is our last chance to honor them but we usually give ourselves only 3-4 days to plan for it because we act like it will never happen. I tell families it is never to early to start planning the “honoring” ceremony. It can be wonderful to reminisce with loved ones, ask them what words of wisdom they would like said, what songs they would like sung, etc. When the time comes you will know you are doing exactly what they wanted and the time is much less stressful.

27. Quality/Cost of End of Life Care • Nationally, only 25% of deaths occur at home, although more than 70% of Americans say that this is where they would prefer to die. (“Means to a Better End: A Report on Dying in America Today” Last Acts 2002—Funded by RWJF). The 75% of patient that die in hospitals and nursing homes often receive high-tech interventions and are in pain (Sager, et al., 1989) • 26% of Medicare funds are spent on care in the last year of life. 38% of this is spent in the last 30 days (Hoover et. al., Health Services Research 2002)

28. HomeCare Physicians’ Mission • Improve the quality of life of homebound patients • Improve the quality of life of caregivers • Decrease health care costs by enabling patients to remain at home and avoid expensive emergency departments, hospitals and nursing homes

29. Three Reasons for the Decline of the House Call • Increased office/hospital based technology • Fear of increased liability • Financial disincentives Do these barriers still exist?

30. House call decline:Financial disincentives

31. Why Home Care Medicine’s Time Has Come • Demographics: The aging of society • Technology allows quality care in the home • COST SAVINGS

32. 5/14/09 – 2/18/11 • (1 year, 9 months (645 days)) • 44 Emergency Department Visits (avg 16 days between visits) • 27 Hospitalizations—over half required ICU days (avg 25 days between stays) • HCP First Visit 3/2/11 (365 Days) • 1ED visit + 1 Hospitalization (May 2011) • Expected: 25 ED visits, 15 hospitalizations 1 Year Cost Savings: $188,000

33. High-Cost Medicare Beneficiary Spending Source: Congressional Budget Office based on data from the Centers for Medicare and Medicaid Services. Note: Spending reported in 2005 dollars

34. Costs of Care Before vs During HBPC for 2002 (per patient per year) *includes HBPC cost 34

35. Potential Savings • Illinois population = 12,869,257 • 12.7% >65 = 1,634,396 • 3.4% ≥ 3 ADL deficiencies = 55,569 • VA saved $9,132 per HBPC patient Total Yearly Savings = $507,460,233

36. Thanks to legislative sponsors Senators Jim Oberweis and Linda Holmes and Representatives Linda Chapa La Via, Mike Fortner and Kay Hatcher • Thomas.Cornwell@cadencehealth.org • www.homecarephysicians.org