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How to Care for Aging ParentsThomas Cornwell, MD

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Why is this an Issue Now?

Then Now

Average life expectancy – 47.0 (1900)

Average life expectancy—78.2

Families close together Families dispersed

Women as stay-at-home caregivers

Women in the workforce

Short period of illness and infirmity, then death

Old age and frailty, in need of almost constant care for months/years

In need of a hot meal and loving attention

In need of catheter care, oxygen, tube feeding, many medications, etc.

• 10,000 new Medicare beneficiaries daily

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Sandwich Generation

• Nearly half of middle-aged adults are either raising a young child or financially supporting a grown child

• About one in seven middle-aged adults is providing financial support to both an aging parent and a child

Source: http://www.pewsocialtrends.org/2013/01/30/the-sandwich-generation

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Talk, Talk, Talk

• Issues:o Parenting your parent (Geriatric un-development)o Housing options (now and future)o Financial and legalo Healthcareo Death and funeral (“Honoring ceremony”)

• Guiding principles:o Start with areas of agreemento Have entire family on the same page in regards to responsibilities and patient

goalso Avoid highly charged and emotional wordso Goal is to end all discussions peacefully and to not seek victory

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Housing Options

• Accessory (in-law) apartments• Shared and congregate housing• Shared apartments• Assisted living• Life care retirement communities• Nursing homes• Live-in caregivers• Guiding principles:

o Try to discuss and plan before a crisis occurso What are the options if/when you or your loved one declines?

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Legal Issues

• Living will• Durable power of attorney for healthcare and finances• Advanced directives• “Do not resuscitate” form/”POLST” form• Last will and testimony• National Academy of Elder Law Attorneys

o Naela.como 602.881.4005

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Caring for the Caregiver

• Set limits• Accept and enlist help• The Family and Medical Leave Act allows for 12 weeks of unpaid leave to

care for family member• Emotional minefields: Guilt and helplessness• Maintain your physical, emotional and spiritual life

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Preventive Care

• Yearly flu shot• Pneumonia shot once, or twice five years apart, after age 65• Tetanus shot every 10 years• Balanced diet• Exercise• Multivitamin• No smoking• Osteoporosis screening

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Doctor Visits

• Avoid ageism• Bring all medications to visit• Bring list of concerns

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Medical Care

• Yearly eye and dental exam (Audiologist if there is a hearing problem)• Medical alert system (e.g. Lifeline, Medical Alert)• Medications—the less the better• Ways to save money:

o Ask pharmacist if there is a generic equivalent or a larger pill that can be broken in half

o Pharmaceutical discount cards or indigent programs

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Common Medical Problems

• Falls—most common in bathroom• Pressure sore prevention:

o Avoid same position for more than two hourso Pressure-reducing surfaces on hospital bed/wheel chairso No donut cushiono Reduce friction

• Signs of depression:o Depressed moodo Angero Anxietyo Decreased motivationo Anhedoniao Loss of appetiteo Trouble sleeping

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Dementia

• Descriptive diagnosis of abnormal memory loss and cognitive functioning• Greatest problem is short term memory loss is often not realized by

patient (and sometimes family)• Agitation can be a major problem

o Speak in a slow, calm voiceo They are “always” righto Redirect when they are upset—they can only focus on one thing at a time

• They use “cues” in their environment to orient themselves, and caregivers can take advantage of this (calendars, leaving messages, etc.)

• Consider neuropsychiatric testing for more definitive diagnosis and coping strategies

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Hospitalization

• Elderly need to have an advocate• Discharge planning begins day one of hospitalization

o Is going home an option?o Will rehabilitation be necessary/helpful?

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Medicare/Medicaid Intermittent Home Health

• Must be homebound• Must have a need for a skilled nurse, physical therapist or speech therapist• If above criteria are met, they can also get an occupational therapist,

social worker and aide if necessary• Medicare and Medicaid do not pay for home health when only custodial

care is needed

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Quality Vs. Crisis End-of-Life Care

“The death of a loved one will always be sorrowful, but it does not need to bea crisis. It tends to be a crisis in our country, because we avoid talking about itand planning for it.”

- Dr. Thomas Cornwell

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End-of-Life Care

• “To whatever extent you are able, acknowledge this dying process and, in doing so, celebrate life.”

• Start communicating preferably before he/she is sick• Responses to a terminal diagnosis:

o Denialo Angero Bargainingo Depressiono Acceptance

• Greatest fear of terminally ill: Suffering and abandonment—not death• Hospice care:

o Life expectancy less than six monthso Patient does not desire aggressive curative care but does want aggressive

comfort care

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Communication is Key

• Hospice is a two-way evaluationo Hospice evaluates if the patient meets Medicare criteriao Patient/family evaluate if they would benefit from hospice

• 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:o 10% of hospice patients dying on day oneo Over 50% of patients dying in the first two weeks

• A good question to ask is, “Would you be surprised if the patient passed away in the next six months?”

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Communication is Key (continued)

• Patients/families need to know their options:o DNR (DNAR)/POLSTo Hospitalizationo Ventilatoro Tube feedingso Dialysiso Antibioticso Preferred site of death

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Five Wishes Document

1. The person I want to make care decisions for me when I can’t2. The kind of medical treatment I want or don’t want3. How comfortable I want to be4. How I want people to treat me5. What I want my loved ones to know

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Wish 1: The Person I Want to Make Health Care Decisions for Me When I Can’t Make Them for Myself

• Picking the right person to be your healthcare agent:o Knows you wello Can make difficult decisionso Will stand up and advocate for youo Lives nearbyo Must be at least 18 years old• Should not be your healthcare provider or employee of your healthcare provider

• Communication your wishes with your healthcare agent:o What level of medical care is desired and for how long?o What level of psychiatric care is desired?o Release of medical recordso Organ donationo Review financial information and insurance formso Desired location to spend your last days/hours

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Completing Five Wishes

• Sign and fill in demographic information• Have two witnesses sign• No notarization required in Illinois• Distribute copies and discuss with POAHA, 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

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DNR (Do Not Attempt Resuscitation)/POLST Form

• Only document paramedics can accept to not do CPR• 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

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The “Honoring” Ceremony

• The funeral/memorial service is our last chance to honor them, but we usually give ourselves only 3-4 days to prepare

• It is never too early to start planning the “honoring” ceremony• When the time comes, you will know you are doing exactly what they

wanted, and the time is much less stressful

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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

• The 75% of patients that die in hospitals and nursing homes often receive high-tech interventions and are in pain

• 26% of Medicare funds are spend on care in the last year of life; 38% of this is spent in the last 30 days

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HomeCare Physicians’ Mission

• Improve the quality of life of homebound patients• Improve the quality of life of caregivers• Decrease healthcare costs by enabling patients to remain at home and

avoid expensive emergency departments, hospitals and nursing homes

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Three Reasons for the Decline of the House Call

• Increased office/hospital-based technology• Fear of increased liability• Financial disincentives

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House Call Decline: Financial Disincentives

House Calls 1997 2012

Follow-up $59.37 $131.38

New $101.62 $188.35

Assisted Living 2005 2012

Follow-up $48.30 $137.38

New $75.00 $191.51

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Why Home Care Medicine’s Time Has Come

• Demographics: The aging of society• Technology allows quality care in the home• Cost savings

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5/14/09—2/18/11 (1 year, 9 months)

• 44 Emergency Department (ED) visits (average 16 days between visits)• 27 hospitalizations—over half required ICU days (average 25 days between

stays)• HCP first visit 3/2/11 (365 days)

o One ED visit and one hospitalization (May 2011)o Expected: 25 ED visits and 15 hospitalizations

• One year cost savings: $188,000

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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

Medicare Spending

% of Total Mean

Top Quartile 85% $24,800

Second Quartile

11% $3,290

Bottom Half 4% $550

Total 100% $7,310

Medicare Spending

% of Total Mean

Top 5% 43.1% $63,030

Top 6-10% 18.4% $26,900

Top 11-25% 23.5% $11,430

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Costs of Care Before Vs. During HBPC for 2002

N=11,334$103,502,088

Before HBPC During HBPC Change

Total Cost of VA Care

$38,168 $29,036* -$9,123

Hospital $18,868 $7,026 -63%

Nursing Home $10,382 $1,382 -87%

Outpatient $6,490 $7,140 +10%

All home care $2,488 $13,588* +460%

* Includes HBPC cost

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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

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Thank you

• Thanks to legislative sponsors Senators Jim Oberweis and Linda Holmes and Representatives Linda Chapa LaVia, Mike Fortner and Kay Hatcher

• Thomas.Cornwell@cadencehealth.org• www.homecarephysicians.org