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How to Care for Aging Parents
Thomas 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-sandwichgeneration
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Talk, Talk, Talk
• Issues:
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Parenting your parent (Geriatric un-development)
Housing options (now and future)
Financial and legal
Healthcare
Death and funeral (“Honoring ceremony”)
• Guiding principles:
o Start with areas of agreement
o Have entire family on the same page in regards to responsibilities and patient
goals
o Avoid highly charged and emotional words
o Goal is to end all discussions peacefully and to not seek victory
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Housing Options
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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 occurs
o What are the options if/when you or your loved one declines?
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Legal Issues
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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.com
o 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
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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
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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:
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Avoid same position for more than two hours
Pressure-reducing surfaces on hospital bed/wheel chairs
No donut cushion
Reduce friction
• Signs of depression:
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Depressed mood
Anger
Anxiety
Decreased motivation
Anhedonia
Loss of appetite
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 voice
o They are “always” right
o 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 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
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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:
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Denial
Anger
Bargaining
Depression
Acceptance
• Greatest fear of terminally ill: Suffering and abandonment—not death
• Hospice care:
o Life expectancy less than six months
o 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 evaluation
o Hospice evaluates if the patient meets Medicare criteria
o 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 one
o 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:
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DNR (DNAR)/POLST
Hospitalization
Ventilator
Tube feedings
Dialysis
Antibiotics
Preferred site of death
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Five Wishes Document
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5.
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
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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
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Picking the right person to be your healthcare agent:
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Knows you well
Can make difficult decisions
Will stand up and advocate for you
Lives nearby
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:
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What level of medical care is desired and for how long?
What level of psychiatric care is desired?
Release of medical records
Organ donation
Review financial information and insurance forms
Desired location to spend your last days/hours
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Completing Five Wishes
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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
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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
Medicare Spending
Medicare Spending
% of Total
Mean
Top Quartile
85%
$24,800
Second
Quartile
11%
$3,290
Bottom Half
4%
$550
Total
100%
$7,310
% of Total
Mean
Top 5%
43.1%
$63,030
Top 6-10%
18.4%
$26,900
Top 11-25%
23.5%
$11,430
Source: Congressional Budget Office based on data from the Centers for Medicare and
Medicaid Services. Note: Spending reported in 2005 dollars
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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
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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
• [email protected]
• www.homecarephysicians.org
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