How to Care for How to Care for Aging ParentsAging Parents

Thomas Cornwell, Thomas Cornwell, MDMD

Why an issue now?Why an issue now? 1900 average life expectancy 47, families close 1900 average life expectancy 47, families close

together, most women are stay at home caregivers; together, most women are stay at home caregivers; 2013 average life expectancy 78.2, families dispersed, 2013 average life expectancy 78.2, families dispersed, women in the work forcewomen in the work force

In past people had short period of illness and infirmity In past people had short period of illness and infirmity and then death. Now they grow old, frail, and need and then death. Now they grow old, frail, and need almost constant care not for days/weeks but for almost constant care not for days/weeks but for months/years.months/years.

People use to need a hot meal and loving attention, People use to need a hot meal and loving attention, now they need catheter care, oxygen, tube feeding, now they need catheter care, oxygen, tube feeding, vitals taken and eight different medicationsvitals taken and eight different medications

The average caregiver (if there is such a thing) The average caregiver (if there is such a thing) devotes twenty hours per week for five yearsdevotes twenty hours per week for five years

January 1, 2011 the first of 76 million baby boomers January 1, 2011 the first of 76 million baby boomers will turn sixty-five. 10,000 new Medicare beneficiaries will turn sixty-five. 10,000 new Medicare beneficiaries daily.daily.

Sandwich Sandwich GenerationGeneration Nearly half (47%) of adults in their 40s Nearly half (47%) of adults in their 40s

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

Talk, Talk, TalkTalk, Talk, Talk Parents needs and concerns: Parenting Parents needs and concerns: Parenting

your parent (Geriatric un-development)your parent (Geriatric un-development) Housing options (now and future)Housing options (now and future) Financial and legal Financial and legal Health careHealth care Death and funeral (“Honoring ceremony)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.

Housing OptionsHousing Options

Accessory (In-law) apartmentsAccessory (In-law) apartments Shared and congregate housingShared and congregate housing Shared apartmentsShared apartments Assisted livingAssisted living Life Care Retirement CommunitiesLife Care Retirement Communities Nursing HomesNursing Homes Live-in CaregiversLive-in Caregivers

Try to discuss and plan before a crisis occurs. What are the options if (when) you or your loved one declines?

Legal IssuesLegal Issues Living will, durable power of attorney for Living will, durable power of attorney for

health care and finances, advanced health care and finances, advanced directives, “Do not resuscitate form” or directives, “Do not resuscitate form” or “POLST (Physician Orders for Life “POLST (Physician Orders for Life Sustaining Treatment) form” (required in Sustaining Treatment) form” (required in Illinois for paramedics), last will and Illinois for paramedics), last will and testimonytestimony

National Academy of Elder Law Attorneys National Academy of Elder Law Attorneys www.naela.com ( (602-881-4005602-881-4005))

Caring for the Caring for the CaregiverCaregiver Set limits: Learn to say no, determine what Set limits: Learn to say no, determine what

is truly necessaryis truly necessary Accept and enlist helpAccept and enlist help The Family and Medical Leave Act: 12 weeks The Family and Medical Leave Act: 12 weeks

of unpaid leave to care for family memberof unpaid leave to care for family member Emotional minefields: Guilt and helplessnessEmotional minefields: Guilt and helplessness Maintain your physical, emotional and Maintain your physical, emotional and

spiritual lifespiritual life

Medical CareMedical Care Preventative care: Yearly flu shot, Pneumonia shot Preventative care: Yearly flu shot, Pneumonia shot

(once (or twice 5 years apart) after age 65), Tetanus (once (or twice 5 years apart) after age 65), Tetanus shot every 10 years, balanced diet, exercise, shot every 10 years, balanced diet, exercise, Multivitamin, stop smoking, Osteoporosis screeningMultivitamin, stop smoking, Osteoporosis screening

Doctor: “Avoid Ageism.” “Old age” is diagnosis of Doctor: “Avoid Ageism.” “Old age” is diagnosis of last resort. Bring all medication including OTC last resort. Bring all medication including OTC medications to visit. Bring list of concerns. Consider medications to visit. Bring list of concerns. Consider Comprehensive Geriatric Assessment.Comprehensive Geriatric Assessment.

Yearly eye and dental exam. Audiologist if hearing Yearly eye and dental exam. Audiologist if hearing problem.problem.

Medical Alert System: (e.g. Lifeline, Medical Alert)Medical Alert System: (e.g. Lifeline, Medical Alert)

Medical CareMedical Care

Medications: The less the better Medications: The less the better balanced with “if it ain’t broke, don’t balanced with “if it ain’t broke, don’t fix it.”fix it.”

Ways to save money: Ways to save money: – Ask pharmacist (not the doctor) if generic Ask pharmacist (not the doctor) if generic

equivalent or larger pill that can be equivalent or larger pill that can be broken in half. broken in half.

– Pharmaceutical discount cards or Pharmaceutical discount cards or indigent programs.indigent programs.

Common Medical Common Medical ProblemsProblems Falls: Most common in bathroom. Consider raised Falls: Most common in bathroom. Consider raised

toilet seat with bars, bath chair that extends toilet seat with bars, bath chair that extends outside tub, grab bars. Other rooms—remove outside tub, grab bars. Other rooms—remove throw rugs and clutter and increase lighting.throw rugs and clutter and increase lighting.

Pressure sore prevention: avoid same position >2 Pressure sore prevention: avoid same position >2 hours, pressure reducing surfaces on hospital hours, pressure reducing surfaces on hospital bed/wheel chairs, bed/wheel chairs, nono donut cushion, reduce donut cushion, reduce friction.friction.

Depression: very common in elderly, can “make Depression: very common in elderly, can “make everything worse.” Signs: depressed mood, everything worse.” Signs: depressed mood, anger, anxiety, decreased motivation, anhedonia anger, anxiety, decreased motivation, anhedonia (no longer enjoys anything), loss of appetite, (no longer enjoys anything), loss of appetite, trouble sleeping. trouble sleeping. CannotCannot “attitude it” away. “attitude it” away.

Common Medical Common Medical Problems: DementiaProblems: Dementia

Dementia: Descriptive diagnosis of abnormal Dementia: Descriptive diagnosis of abnormal memory loss and cognitive functioning. Most memory loss and cognitive functioning. Most common is Alzheimer’s Disease (65-75% of common is Alzheimer’s Disease (65-75% of dementia). Definitive diagnosis currently only at dementia). Definitive diagnosis currently only at autopsy (need brain tissue viewed with microscope). autopsy (need brain tissue viewed with microscope).

Greatest problem is short term memory loss often Greatest problem is short term memory loss often not realized by patient (and sometimes family).not realized by patient (and sometimes family).

Agitation can be a major problem. Three Agitation can be a major problem. Three communication rules: 1. Speak in a slow, calm voice, communication rules: 1. Speak in a slow, calm voice, 2. They are “always” right, 3. Try redirecting when 2. They are “always” right, 3. Try redirecting when they are upset—they can only focus on one thing at they are upset—they can only focus on one thing at a time (I use food to try and redirect their upset)a time (I use food to try and redirect their upset)

Common Medical Common Medical Problems: DementiaProblems: Dementia

They use “cues” in their environment to They use “cues” in their environment to orient themselves and caregivers can orient themselves and caregivers can take advantage of this (e.g. lay out take advantage of this (e.g. lay out pajamas when it is time to go to sleep)pajamas when it is time to go to sleep)

Help to orient them: Calendars, dry-Help to orient them: Calendars, dry-erase boards to leave messages, people erase boards to leave messages, people should introduce themselves and not should introduce themselves and not ask,” Do you remember who I am?”ask,” Do you remember who I am?”

Consider neuropsychiatric testing for Consider neuropsychiatric testing for more definitive diagnosis and coping more definitive diagnosis and coping strategiesstrategies

Medical Care: Medical Care: HospitalizationHospitalization

Elderly need to have an advocate: need to Elderly need to have an advocate: need to watch what is going on and keep the patient watch what is going on and keep the patient as active as possible (get them walking as as active as possible (get them walking as soon as possible)soon as possible)

Discharge planning begins day one of Discharge planning begins day one of hospitalization: Is going home an option? hospitalization: Is going home an option? Will rehabilitation be necessary/helpful Will rehabilitation be necessary/helpful (Medicare covers rehabilitation in a skilled (Medicare covers rehabilitation in a skilled nursing facility if the patient was nursing facility if the patient was hospitalized for three midnights and if hospitalized for three midnights and if therapy/further skilled treatment will benefit therapy/further skilled treatment will benefit the patient)?the patient)?

Medical CareMedical Care

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

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

Dr. Thomas CornwellDr. Thomas Cornwell

Quality vs. Crisis End of Quality vs. Crisis End of Life CareLife Care

End-of-Life CareEnd-of-Life Care ““To whatever extent you are able, acknowledge To whatever extent you are able, acknowledge

this dying process and, is so doing, celebrate this dying process and, is so doing, celebrate life.”life.”

Start communicating preferably before he/she is Start communicating preferably before he/she is sicksick

Responses to a terminal diagnosis: Denial, Responses to a terminal diagnosis: Denial, Anger, Bargaining, Depression, AcceptanceAnger, Bargaining, Depression, Acceptance

Greatest fear of terminally ill: Suffering and Greatest fear of terminally ill: Suffering and abandonment—not deathabandonment—not death

Hospice care: life expectancy less than 6 months Hospice care: life expectancy less than 6 months and patient does not desire aggressive curative and patient does not desire aggressive curative care but does want aggressive comfort care but does want aggressive comfort carecare

Communication is Communication is KeyKey

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

Patients/Families need to know their options:

Communication is Communication is KeyKey

Hospice is an interdisciplinary Hospice is an interdisciplinary homehome health service health service for patients whose prognosis is less than six for patients whose prognosis is less than six months.months.

Doctors and patients are poor at predicting when Doctors and patients are poor at predicting when end-of-life will occur which leads to 10% of hospice end-of-life will occur which leads to 10% of hospice patients dying on day one and over 50% dying in patients dying on day one and over 50% dying in the first two weeks. Hospice’s value is lessened if the first two weeks. Hospice’s value is lessened if length of service is less than two weeks. length of service is less than two weeks.

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

Hospice can continue for longer than six months if Hospice can continue for longer than six months if the patient’s condition warrants.the patient’s condition warrants.

Communication is Communication is KeyKey

DNR (DNAR)/POLSTDNR (DNAR)/POLST HospitalizationHospitalization VentilatorVentilator Tube FeedingsTube Feedings DialysisDialysis AntibioticsAntibiotics Preferred site of deathPreferred site of death

Patients/Families need to know their options:

FIVE WISHESFIVE WISHES

I.I. The person I want to make care The person I want to make care decisions for me when I can’tdecisions for me when I can’t

II.II. The kind of medical treatment I The kind of medical treatment I want or Don’t wantwant or Don’t want

III.III. How comfortable I want to beHow comfortable I want to be

IV.IV. How I want people to treat meHow I want people to treat me

V.V. What I want my loved ones to What I want my loved ones to knowknow

FIVE WISHESFIVE WISHES

WISH 1WISH 1

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

MyselfMyself

Picking the Right Person Picking the Right Person to Be Your Health Care to Be Your Health Care AgentAgent Knows you wellKnows you well Can make difficult decisionsCan make difficult decisions Will stand up and advocate for youWill stand up and advocate for you Lives nearbyLives nearby Must be Must be 18 years old18 years old Should not be your health care Should not be your health care

provider, employee of health care provider, employee of health care providerprovider

Communicate Your Wishes Communicate Your Wishes With Your Health Care With Your Health Care AgentAgent What level of medical care is desired and for how What level of medical care is desired and for how

long (Tube feedings, Ventilator Care, long (Tube feedings, Ventilator Care, Hospitalization)Hospitalization)

What level of Psychiatric care (Medication, What level of Psychiatric care (Medication, Hospitalization, Electro-convulsive shock treatment)Hospitalization, Electro-convulsive shock treatment)

Release of Medical RecordsRelease of Medical Records Organ DonationOrgan Donation Review financial information to apply for/fill out Review financial information to apply for/fill out

insurance formsinsurance forms Desired location to spend your last days/hours Desired location to spend your last days/hours

(hospital, nursing home, home)(hospital, nursing home, home)

Completing FIVE Completing FIVE WISHESWISHES

Sign and fill in demographic informationSign and fill in demographic information Have two witnesses sign (note the Have two witnesses sign (note the

written requirements for the witnesses)written requirements for the witnesses) No Notarization required in IllinoisNo Notarization required in Illinois Distribute copies and discuss with Distribute copies and discuss with

POAHC, family, medical provider, nursing POAHC, family, medical provider, nursing home, assisted living facility, etc.home, assisted living facility, etc.

Fill in Five Wishes Wallet Card and keep it Fill in Five Wishes Wallet Card and keep it with you to notify people where to locate with you to notify people where to locate the documentthe document

DNR (Do Not (Attempt)DNR (Do Not (Attempt) Resuscitation)/POLST Resuscitation)/POLST

FormForm ONLY Document paramedics can accept ONLY Document paramedics can accept

to not do CPR (cardiopulmonary to not do CPR (cardiopulmonary resuscitation)resuscitation)

Must be signed by patient, guardian, POA Must be signed by patient, guardian, POA or healthcare surrogateor healthcare surrogate

Must have a witnessMust have a witness Must be signed by a doctorMust be signed by a doctor State of Illinois transitioning to POLST State of Illinois transitioning to POLST

(Physician Orders for Life Sustaining (Physician Orders for Life Sustaining Treatment) Form Treatment) Form

The “Honoring” The “Honoring” CeremonyCeremony

If you really want to honor your parents at their If you really want to honor your parents at their 5050thth wedding anniversary it would be hard to do wedding anniversary it would be hard to do a good job with only 3-4 days to prepare. We a good job with only 3-4 days to prepare. We often do this for our loved ones at the end of often do this for our loved ones at the end of life. Their funeral/memorial service is our last life. Their funeral/memorial service is our last chance to honor them but we usually give chance to honor them but we usually give ourselves only 3-4 days to plan for it because ourselves only 3-4 days to plan for it because we act like it will never happen. I tell families it we act like it will never happen. I tell families it is never to early to start planning the is never to early to start planning the “honoring” ceremony. It can be wonderful to “honoring” ceremony. It can be wonderful to reminisce with loved ones, ask them what words reminisce with loved ones, ask them what words of wisdom they would like said, what songs they of wisdom they would like said, what songs they would like sung, etc. When the time comes you would like sung, etc. When the time comes you will know you are doing exactly what they will know you are doing exactly what they wanted and the time is much less stressful.wanted and the time is much less stressful.

Quality/Cost of End of Quality/Cost of End of Life CareLife Care Nationally, only 25% of deaths occur at Nationally, only 25% of deaths occur at

home, although more than 70% of home, although more than 70% of Americans say that this is where they would Americans say that this is where they would prefer to die. (“Means to a Better End: A prefer to die. (“Means to a Better End: A Report on Dying in America Today” Report on Dying in America Today” Last Last Acts Acts 2002—Funded by RWJF). The 75% of 2002—Funded by RWJF). The 75% of patient that die in hospitals and nursing patient that die in hospitals and nursing homes often receive high-tech interventions homes often receive high-tech interventions and are in pain (Sager, et al., 1989)and are in pain (Sager, et al., 1989)

26% of Medicare funds are spent on care in 26% of Medicare funds are spent on care in the last year of life. 38% of this is spent in the last year of life. 38% of this is spent in the last 30 days (Hoover et. al., the last 30 days (Hoover et. al., Health Health Services Research Services Research 2002)2002)

HomeCare Physicians’ HomeCare Physicians’ MissionMission

1.1. Improve the quality of life of Improve the quality of life of homebound patientshomebound patients

2.2. Improve the quality of life of caregiversImprove the quality of life of caregivers

3.3. Decrease health care costs by enabling Decrease health care costs by enabling patients to remain at home and avoid patients to remain at home and avoid expensive emergency departments, expensive emergency departments, hospitals and nursing homeshospitals and nursing homes

Three Reasons for the Three Reasons for the Decline of the House Decline of the House CallCall1.1. Increased office/hospital based Increased office/hospital based

technologytechnology

2.2. Fear of increased liabilityFear of increased liability

3.3. Financial disincentivesFinancial disincentives

Do these barriers still exist?

House call decline:House call decline:Financial disincentivesFinancial 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

Why Home Care Why Home Care Medicine’s Time Has Medicine’s Time Has ComeCome Demographics: The aging of Demographics: The aging of

societysociety Technology allows quality care in Technology allows quality care in

the homethe home COST SAVINGSCOST SAVINGS

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) 1 ED visit + 1 Hospitalization (May 2011)

Expected: 25 ED visits, 15 hospitalizations

1 Year Cost Savings: $188,000

High-Cost Medicare Beneficiary Spending

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

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

Costs of Care Before vs During HBPC Costs of Care Before vs During HBPC for 2002 for 2002 (per patient per year) *includes HBPC (per patient per year) *includes HBPC costcostN=11,334$103,502,088

Before HBPC

During HBPC

Change

Total Cost of VA Care

$38,168 $29,036* -$9,132

Hospital $18,868 $7026 - 63%

Nursing home $10,382 $1382 - 87%

Outpatient $6490 $7140 + 10%

All home care $2488 $13,588* + 460%34

Potential SavingsPotential Savings

Illinois population = 12,869,257Illinois population = 12,869,257 12.7% >65 = 1,634,39612.7% >65 = 1,634,396 3.4% ≥ 3 ADL deficiencies = 55,5693.4% ≥ 3 ADL deficiencies = 55,569 VA saved $9,132 per HBPC patientVA saved $9,132 per HBPC patient

Total Yearly Savings = $507,460,233

Thanks to legislative sponsors Thanks to legislative sponsors Senators Jim Oberweis and Linda Senators Jim Oberweis and Linda Holmes and Representatives Linda Holmes and Representatives Linda Chapa La Via, Mike Fortner and Chapa La Via, Mike Fortner and Kay HatcherKay Hatcher

Thomas.Cornwell@cadencehealth.org

www.homecarephysicians.org