Carol Levine, Director

Kristina Ramos-Callan, Program Manager

Families and Health Care Project United Hospital Fund

Discharge Planning is a Family Affair:Key Roles and Concepts for Family Caregivers

101 Montgomery Street, Suite 2150

Francisco, CA 94104

800.445.8106 | 415.434.3388

caregiver.org

www.caregiver.org

United Hospital Fund works to build a more effective health care system for every New Yorker. An independent, nonprofit organization, we analyze public policy to inform decision-makers, find common ground among diverse stakeholders, and develop and support innovative programs that improve the quality, accessibility, affordability, and experience of patient care.

Created by UHF, Next Step in Care is designed to change health care practice by routinely identifying, acknowledging, training, and supporting family caregivers, especially at times of transitions in care. It provides practical advice and easy-to-use guides for both health care providers and family caregivers that focus on transitions between hospitals, rehabilitation facilities, nursing homes, and home. While New York is the primary focus of UHF and Next Step in Care’s work, the impact and relevance are national and even international.

www.nextstepincare.orgwww.uhfnyc.org

Regulatory issues that may affect hospital stay and hospital discharge

Why discharge planning is important and why family caregivers should be involved in decisions

Important features of good discharge planning

Factors in making decisions about Post-acute Care

Identify who can help when problems arise

Learning Objectives

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Regulations That May Influence the Hospital Stay

Observation status means hospital outpatient services were given to help the doctor decide if the patient needs to be admitted as an inpatient or can be discharged. Observation services may be given in the emergency department or another area of the hospital. (CMS, 2017)

Inpatient vs. Outpatient Status: Inpatient means formally admitted with a doctor’s order.

Examples: https://www.medicare.gov/Pubs/pdf/11435.pdf

The patient has the right to be informed if they are on observation status

The patient’s admission status affects how much hospital services (like X-rays, drugs, and lab tests) cost, and how/whether rehabilitation services are covered under Medicare rules.

Refer to your latest Medicare & You handbook for coverage rates. Accessible at https://www.medicare.gov/sites/default/files/2018-09/10050-medicare-and-you.pdf

Observation Status

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At the Hospital — But Not Admitted? Ask repeatedly, “Has my family member been officially

admitted to the hospital, or is he or she under observation status?”

Make a note of each staff person’s response, including name & date.

NOTE: The hospital can retroactively (after the fact) change the patient’s status from inpatient to outpatient. This change is supposed to be made while the patient is still in the hospital, with a written notification to the patient.

If you do not receive this notification, or if you want to appeal the decision, you may want to refer to the Center for Medicare Advocacy’s “Self-Help Packet for Medicare “Observation Status”

Observation Status (cont’d)

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Caregiver Advise, Record, and Enable Act Law in 43 states and territories; provisions vary Intended to ensure that family caregivers are identified in

hospitals and trained to provide post-discharge care. Only applies to hospitals—so far

Four basic requirements1. Offer patient opportunity to identify a caregiver and

document the person’s contact information2. Obtain patients’ written consent to share medical

information with caregiver (written consent is not required in all states)

3. Inform caregiver about expected discharge date4. Provide instruction about care at home to caregiver

The CARE Act

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Hospitals are required to establish a safe and viable discharge plan even if the patient does not name a caregiver Hospitals are not required to delay a discharge because a patient has

not named a caregiver

If a patient names a caregiver The person identified by as a caregiver does not have to accept the

role. Instruction for post-discharge care may be provided in various ways,

including demonstration or video. This instruction may be helpful, but is unlikely to cover everything about post-hospital care.

Caregivers should communicate their availability, comfort, and willingness to provide care to the discharge planner

Does not create any new financial obligations to the caregiver

The CARE Act

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Bundled payment is a strategy used to encourage improved quality and efficiency of care at lower cost

A “Bundle” is a single payment for treating a specific medical condition across an episode of care

An Episode of Care includes all medical services provided to a patient for a particular condition within a specific period of time

Patients must be notified of participation in a bundled payment model per CMS rules

Examples of commonly bundled medical conditions: Joint Replacement Renal Failure or ESRD Cardiac Pacemaker implant

Bundled Payment

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No research yet to describe effects on patient experience. Health researchers theorize:

Drive to reduce costs may encourage providers to improve coordination and “most likely” lead to better patient experience

BUT Level of provider participation may limit patients’ choice of

physicians

AND Pressure to cut costs may lead to less time with patients or

decreased amenities, e.g. decreased length of stay; less intensive rehab services

Source: Bertko, J., & Effros, R. (2011). Increase the use of “bundled” payment approaches. Rand health quarterly, 1(3). Accessible at https://www.rand.org/pubs/technical_reports/TR562z20/analysis-of-bundled-payment.html#top

Bundled Payment (cont’d)

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Health Information Privacy and Accountability Act (HIPAA) Federal law to protect medical information from unauthorized use Does not prevent health care providers from sharing a patients

private medical information with family, relatives, friends or others the patient identifies as long as they are involved with his or her health care or responsible for health care bills

Does not require patient consent to share health information with family caregivers, as long as the patient does not object

HIPAA does not require proof of identity Health care providers may have their own rules for verifying who is

asking for information. https://www.hhs.gov/hipaa/for-individuals/faq/526/if-my-family-calls-my-health-care-provider-will-they-have-to-give-my-provider-proof-of-who-they-are/index.html

Caregivers Can Get Information They Need!

HIPAA

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Hospital Discharge Planning: The Caregiver’s Role

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Discharge Planning is a Family Affair

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https://www.youtube.com/watch?v=Un7As1R2-HU

Helps reduce risk for poor outcomes Readmission Medication errors Gaps in care Falls

Safe and adequate discharge plans are patient-specific Consider a patient needs as well as the family

caregiver’s: Availability and willingness Need for training Worries

Why is Good Discharge Planning Important?

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What is it? “A process used to decide what a patient needs for a smooth

move from one level of care to another.” – CMS Not just planning for a physical change in care setting, but

for a recovery period that may last a while

Who does it? Ordered by a doctor but can be carried out by SW, RN, care

manager or someone else

When does it happen? It depends!

Planned admission – some steps can be planned ahead of hospital stay

Unplanned – ongoing but patient and caregiver involvement usually starts a few days before the anticipated end of stay

Discharge Planning

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Preparing for Hospital Discharge

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Organize:

• Person’s health records

• Care planners/ schedules

• Medication lists

• Medical records and/or patient portal access

• Insurance coverage info

• Contact info – doctors, pharmacies, DME suppliers, etc…

• Copies of any advance directives

Note: some advance directives, like DNR, differ by setting and may require multiple versions (e.g. hospital vs. at home)

Make Sure the Provider Knows:

• Who the primary family caregiver is, and

• Caregiver’s contact information is on record and current

• Caregiver’s availability and capability to help with the patient

• Any professional health care services already engaged with the patient, such as home health agencies

Caregivers Can Self-Assess to Help Plan

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Caregivers Can Self-Assess to Help Plan

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Adapted from NSIC’s What Do I need as a Family Caregiver? at https://www.nextstepincare.org/uploads/File/Guides/Caregiver_Self-Assessment/What_Do_I_Need.pdf

Av

aila

bil

ity •Easy distance from patient?

•Do you work?

•Are you raising young children?

•Are you a caregiver to anyone else?

•Does your health affect caregiving?

•Can anyone else help?

•Are there other professional services involved with the patient? T

rain

ing

Nee

ds •ADLs (bathing, dressing,

toileting, hygiene and grooming)

•Mobility and Transfer

•Medication

•Equipment

•Care coordination

•Transportation

•Household chores and other tasks

Wo

rrie

s •Stress level and coping

•Work life balance

•Caregiving’s impact on relationships

•Managing medications

•Behavior (e.g. resisting care)

•Decision making, health and legal issues

•Safety and supervision (e.g. falls, wandering)

Care and services following hospitalization to continue recovery

At home, with nursing or services provided by a home health agency;

At a skilled nursing facility (SNF);

At an inpatient rehabilitation facility; or

At a long-term care hospital

About Post Acute Care

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Caregivers’ Most Common Concerns About Transitions to Post-Acute Care

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Timing

•May have had little notice of care transition, e.g. late notice of discharge or transfer

•Caregivers and patients need time to consider the options but time is never available

•Caregivers may simply be told, “We’re sending your mother to a nursing home,” causing extreme distress.

Information Available

•PAC choice guidance is limited, sometimes due to interpretation of anti-steering regulations

PAC setting choice

•Patients and caregivers may disagree about the choice of type of PAC setting or specific PAC facility

Care refusal

•Patients may even refuse home health care (almost a third in one study (Topaz, M., et al., American Journal of Managed Care; 21(5); 2015.)

Hospital to Home

Home with Home Care

Hospital Discharge: Going Home

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Getting home Know when discharge will take place

Prepare the patient’s home

Provide or arrange for transportation

Medical nursing tasks Coordinate home-based services like visiting nurse, physical

therapy, home-health services

Receive and set up medical equipment; learn how it works

Manage medications

Prepare special diets

Assist with mobility and other daily activities

Ongoing care coordination Be present for home-based service intake or initial visit

Know who to call, beyond the doctor, if there’s a problem

Schedule post-acute services like visiting nurse, therapists

Provide companionship or additional supervision

Caregiver’s Role in Discharge Planning

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NSIC Discharge Checklist at: https://www.nextstepincare.org/uploads/File/Guides/Hospital/Discharge_Checklist/Discharge_Checklist.pdf

Use a checklist To help with planning: keep track of task,

appointments, and new services

Ask questions and take notes keep track of who you talk to and when

Prepare for new needs Get training to manage medication, help with

mobility; prepare special diets

Get the home ready Install ramps, grab-bars or other supports, remove

falls risks, etc…

Plan for additional expenses e.g. medical equipment – find out what’s covered

Make a list of key contacts doctors, pharmacies, DME companies, home health

agencies

Get additional help if needed Think about what family, friends, and community

organizations might help with

Hospital Discharge Planning TipsFor Patients & Caregivers

www.caregiver.org

https://www.medicare.gov/sites/default/files/2018-07/11376-discharge-planning-checklist.pdf

Know Who to Call About the Discharge Plan

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Coordinate care, discharge planning, refer to social servicesSocial Workers

Liaise between patients and health care providers on patient rights, complaints, grievances, and conflict resolution.

Patient Advocate/ Patient Navigator

Advocate for older adults and persons with disabilities in residential facilities. www.ltcombudsman.org

Long Term Care Ombudsman

The Beneficiary and Family Centered Care-Quality Improvement Office handles Medicare appeals and grievances http://qioprogram.org/contact-zones.

BFCC-QIO

Legal analysis, education, and advocacy for older people and people with disabilities, have self-help packets for many kinds of Medicare appeal situations. www.medicareadvocacy.org

Center for Medicare Advocacy

National program with counseling, advocacy, and educational programs to help ensure access to care for older adults and people with disabilities https://www.medicarerights.org/

Medicare Rights Center

Getting a Post-Discharge Appointment Within Seven Days

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Ask Hospital Staff to:

Caregivers Can:

• Let the community provider know what happened in the hospital• Note that the patient/family caregiver will follow up for an appointment

• Call the provider’s office to schedule the appointment• Say why the appointment is needed right away• If you are having difficulty scheduling, ask to speak to a nurse or

other clinician• If you are still having difficulty scheduling the appointment, insist

on speaking to the doctor.Adapted from https://www.nextstepincare.org/uploads/File/Guides/Hospital/Post_Discharge_Appointment/Post_Discharge_Appointment.pdf

Medication reconciliation: the process of creating the most accurate list possible of all medications (RX and OTC) a patient is taking and comparing that list to admission, transfer, and/or discharge orders, with the goal of preventing adverse medical events. Source: IHI

Medication Management is how one ensures for any medications given the right patient the right drug the right dose the right route, and the right time

Medication Reconciliation & Management

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Seuss. (1986). You're Only Old Once!. Random House Childrens Books.

Skilled Nursing Facilities

Inpatient Rehabilitation Facilities

Long Term Acute Care Hospitals

Hospital Discharge: PAC in a Facility

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Difficult Decisions About Post-Acute Care

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https://uhfnyc.org/publications/publication/difficult-decisions-about-post-acute-care-and-why-they-matter

Decisions about PAC Matter to Patients

• Patients who receive care from lower quality providers have higher risk of complications and worse outcomes

• Choosing carefully can mean the difference between full recovery, cycling in and out of facilities, becoming a nursing home resident, or premature death

External Factors Limit Choice

• Insurance Constraints – Type or lack of coverage, benefit limits, authorization requirements, narrow networks, interpretations of medical necessity

• Capacity Constraints – Supply and capabilities of providers in a geographic area, availability of community services and supports

• Other System Constraints – PAC admission criteria, referral patterns/relationships between physicians/hospitals and PAC providers – e.g., ACOs, CJR, BPCI Initiative

What’s Important to Patients and Caregivers When Choosing a PAC Setting?

www.caregiver.org

https://uhfnyc.org/publications/publication/patient-and-caregiver-perspectives-discharge-planning/

• Convenient for family/friends; some willing to go further for specific services

Location

•Frequency of physical therapy; any special services available? e.g. ventilator, specific disease supports (e.g. ALS), on-site dialysis

Intensity and Availability of Services

•For patients who won’t be able to go home, is the PAC setting appropriate for transition to long-term care?

Ongoing Care

•Is the PAC facility in-network?•Will the facility take patients with expensive medication needs?

Finances

Consumer Tools to Understand PAC Quality

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Public sources on information

on Post-Acute Care

• CMS• Nursing Home Compare

• Home Health Compare

• State NH quality websites• http://www.calqualitycare.org/

(from UCSF School of Nursing)

• NYSDOH Nursing Home Quality Initiative

• ProPublica’s Nursing Home Inspect

Publicly available information

has limitations• Many websites, lots of technical

measures, less emphasis on aspects of quality that consumers find meaningful – e.g. quality of life, staffing adequacy, care coordination and communication

• Additional gaps – e.g., facility characteristics, patient/family experience and reviews, staff qualifications, access to specialists, staff interpersonal skills

Transitions don’t end when the patient gets home; they can last for weeks or months. Anticipating patient and caregiver needs in an extended transition may include

identifying community agencies that can help support the care plan.

Resources for Patients & Caregivers Post-Discharge

www.caregiver.org

Family caregivers provide essential emotional, physical, and other kinds of assistance for people who need long-term care.

They need assistance themselves to be able to do this demanding job well.

Care managers are the link to many medical and nonmedical services and supports for both person and caregiver.

Using the available resources can make everyone’s role easier.

Starting with UHF’s Next Step in Care at www.nextstepincare.org will give you many options to investigate.

Summing Up

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Thank you! Questions?

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Carol Levine clevine@uhfnyc.orgKristina Ramos-Callan kcallan@uhfnyc.org

Created by UHF, Next Step in Care is designed tochange health care practice by routinely identifying,acknowledging, training, and supporting family caregivers, especially at times of transitions in care. It provides practical advice and easy-to-use guides for both health care providers and family caregivers that focus on

transitions between hospitals, rehabilitation facilities, nursing homes, and home. While New York is the primary focus of UHF and Next Step in Care’s work, the impact and relevance are national and even international. www.nextstepincare.org

United Hospital Fund works to build a more effective health care system for every New Yorker. An independent, nonprofit organization, we analyze public policy to inform decision-makers, find common ground among diverse stakeholders, and develop and support innovative programs that improve the quality, accessibility, affordability, and experience of patient care. www.uhfnyc.org

Family Caregiver Alliance offers education, services, research, and advocacy based on the

real needs of caregivers. Founded in the late 1970s, FCA is the first community-based

nonprofit organization in the United States to address the needs of families and friends

providing long-term care for loved ones at home.

National Center on Caregiving (NCC) was established by FCA to advance the

development of high-quality, cost effective programs and policies for caregivers in every

state. NCC sponsors the Family Care Navigator, a state-by-state resource locator designed

to help caregivers find support services in their communities.

Bay Area Caregiver Resource Center — operated by FCA for the six-county San Francisco

Bay Area — provides support to family caregivers. FCA’s staff of family consultants

through education programs and direct support offer effective tools to manage the

complex and demanding tasks of caregiving.

Be sure to visit FCA on social media:

About FCA

www.caregiver.org

facebook.com/FamilyCaregiverAlliance

twitter.com/CaregiverAlly

linkedin.com/company/family-caregiver-alliance

google.com/+CAREGIVERdotORG

youtube.com/CAREGIVERdotORG

Family Caregiver Alliance ofrece servicios educativos, de investigación, y abogacía basados

en las necesidades reales de los cuidadores. Fundada a finales de 1970, FCA es la primera

organización comunitaria sin fines de lucro en los Estados Unidos, dedicada a atender las

necesidades de familias y amigos que brindan cuidado a largo plazo a seres queridos.

National Center on Caregiving (NCC) fue establecido por FCA para promover el desarrollo

de programas y políticas de alta calidad y efectivas en costo que beneficien a los cuidadores

en cada estado. NCC es patrocinador del Family Care Navigator, un localizador de recursos

disponibles en los estados, diseñado para ayudar a los cuidadores a encontrar servicios de

apoyo en sus comunidades.

Bay Area Caregiver Resource Center — operado por FCA para los seis condados en el Área

de la Bahía de San Francisco — ofrece apoyo a cuidadores. El equipo de consultoras

familiares de FCA provee herramientas efectivas para sobrellevar las complejas y

demandantes tareas de ser cuidador a través de programas educativos y apoyo directo.

Asegúrese de visitar FCA en las siguientes redes sociales:

Acerca de FCA

www.caregiver.org

facebook.com/FamilyCaregiverAlliance

twitter.com/CaregiverAlly

linkedin.com/company/family-caregiver-alliance

google.com/+CAREGIVERdotORG

youtube.com/CAREGIVERdotORG

101 Montgomery Street, Suite 2150 Francisco, CA 94104

800.445.8106 | 415.434.3388www.caregiver.org