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Next Step in Care: Family Caregivers & Health Care Professionals Working Together

For Health Care Providers

Questions and Toolkit

Health care providers have many opportunities to improve transitions (and improve care for patients) by engaging and partnering with family caregivers. This website section comprises three parts:

Guides for Health Care Providers

Four Questions About Engaging Family Caregivers

A Toolkit for Working with Family Caregivers
(adapted from the Change Package developed
for the Transitions in Care-Quality Improvement Collaborative)

 

Guides for Health Care Providers

In addition to the family caregiver guides and the materials in the Toolkit, Next Step in Care has specific guides for health care providers to help you understand the family caregiver perspective. These are:

 

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Four Questions About Engaging Family Caregivers

  1. Why are family caregivers important to transitions?
  2. How can I identify family caregivers? How are family caregivers different from persons with powers of attorney, next of kin, and other decision makers?
  3. If the patient is alert and oriented, why involve anyone else? Isn't that more work?
  4. What you DON'T know about HIPAA and family caregivers...

 

1. Why are family caregivers important to transitions?

Despite the enormity of the American health care system, family caregivers are and will remain the primary source of care for their seriously and chronically ill (and often elderly) relatives and friends.workforce

In today's fast-paced, technologically driven and financially constrained health care environment, untrained, unpaid, and unsupported family members have been expected to take on ever more daunting and long-term responsibilities. They are responsible for increasingly complex tasks including medication management, care coordination, and financial and legal assistance, in addition to the emotional support that is often the special province of long-standing family ties. For details on the medical and nursing tasks performed by many of today's family caregivers, see the AARP/United Hospital Fund report "Home Alone: Family Caregivers Providing Complex Chronic Care."

Incorporating family caregivers into care, from information gathering and medication reconciliation, to education and training, to discharge planning and post-discharge care, can be a critical component of your work to support frail and chronically ill patients.

For more, see How can I identify family caregivers?

For tools to help integrate family caregivers into transitions, see Toolkit.

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2. How can I identify family caregivers? How are family caregivers different from persons with powers of attorney, next of kin, and other decision makers?

Few people live in a bubble. Most seriously and chronically ill people have someone who helps in some way. It could be a neighbor who knocks on the door every day and drops off the paper, and will pick up prescriptions if the patient is unwell. It could be a spouse who is giving injections because the patient’s hands shake. It could be several adult children: one does the shopping and cooking, another takes the patient to the doctor, and another handles the finances and insurance.

Family caregivers can be anyone who provides care as "family” (in the broadest sense of the term). As health care has changed, so has family caregiving, with more complex medication regimens, shorter stays in hospitals and rehabilitation centers, more skilled care done at home, and more people living with cognitive impairments and requiring continual supervision and redirection.

Many people do not identify themselves as “family caregivers,” and many patients do not identify themselves as needing caregiving. To find out who the family caregiver is, ask the patient about specific tasks. For example:

”When you go to the doctor, who goes with you, or arranges a ride?”

"If you don’t feel well, who do you call?” or “…who helps you out?”

“I want to make sure everyone knows about your new diet, because it’s very important for keeping you well. Who does most of the cooking in your house?”

If the patient is unable to answer or has impairments in cognition or judgment, ask next of kin or other emergency contacts. Remember that the person at a hospital bedside may simply be a visitor, and not someone who provides care. It is best not to make assumptions about who family caregivers should be, such as a spouse or adult child or a person living in the same home. Individual functions in care situations vary widely, even among groups that have strong traditional roles.

Once a family caregiver has been identified, speak with that person. The person may be able to handle the new caregiving responsibilities or may need training, assistance, or respite in order to continue. It's also possible that the person may not be able to continue. Having that conversation with the identified family caregiver can assist you in making a successful plan of care.

To learn how family caregiver identification was done by health care providers in TC-QuIC, see page 13 of the report.

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3. If the patient is alert and oriented, why involve anyone else? Isn't that more work?

Recent studies have shown that even independent, cognitively intact adults retain less than half of the instructions they receive in the hospital. Essential information, such as changed medication regimens, follow-up appointments, and modified diets, can be misunderstood or lost. The patient may not be the person cooking or managing medications for the short term, or may never be responsible for these tasks within the household.

Educating and planning with the family caregiver who will be implementing the transition plan can be a more effective use of staff time and effort. Also, an informed, involved family caregiver can supplement and reinforce the patient's understanding, which may be reduced due to illness and the stress of the situation.

For more, see Why are family caregivers important to transitions?

For tools to help integrate the family caregiver into transitions, see the Toolkit.

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4. What you DON'T know about HIPAA and family caregivers...

It's a common misconception that the HIPAA law prevents health care providers from speaking with family caregivers unless the patient has signed for permission, or unless the person has power of attorney, health care proxy, guardian, or other legal representational status.

While this may be a part of an organization's own protocols, it is NOT part of the HIPAA law.

What IS part of HIPAA, however, is that health care providers should use their own best judgment in working together with people who provide care to the patient or are responsible for the patient's health care bills. The only restriction is if the patient (or legal representative) specifically refuses.

For details, please see:

Family Caregivers’ Rights to Patient Information: What Health Care Providers Need to Know

U.S. Department of Health and Human Services Office for Civil Rights

Health Privacy Project at the Center for Democracy & Technology

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A Toolkit for Working with Family Caregivers

The Basics:

Early identification of family caregivers
Assessment of the family caregiver's needs for training and support

Medication:

Reconciliation
Medication management

Discharge Planning: 

Identifying and eliminating gaps in care
Discussing discharge options with the family caregiver
Communicating with the next care setting

The Transition:

Effective handoff communication with the next setting of care
Reviewing discharge instructions with the family caregiver

Closing the Communication Loop:

Follow-up with the next setting of care
Follow-up with the family caregiver

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Identification: Identifying the friends, relatives, spouses, or other unpaid family caregivers (related or not) who do or will do necessary tasks to support the seriously or chronically ill patient.

Tools:

Identifying the Family Caregiver (includes an easy-to-use script)

Pfizer's Tips for Improving Communication with Your Patients

Points to Consider: Who is the hands-on family caregiver? If there are multiple family caregivers, which ones handle which caregiving tasks? Will this arrangement continue after the patient transitions to the next care setting?

Many family caregivers have never thought of themselves as "caregivers." Recognition of this role can be important for obtaining services, gaining support, and reducing guilt or stress. The First Step in Care: Becoming a Family Caregiver can help.

The LGBT community has a strong, special history of caregiving. Family caregivers may be gay, lesbian, bisexual, transgender, or questioning, or the person receiving care may be. SAGE and Next Step in Care co-authored a guide to LGBT caregiving.

To learn how family caregiver identification was done by health care providers in TC-QuIC, see page 13 of the report.

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Needs Assessment: Assisting the identified family caregiver(s) in comprehensively identifying what he/she needs in order to provide care for the patient.

Tools:

Assessing Family Caregivers:

  • A Guide for Health Care Providers
  • What Do You Need as a Family Caregiver: Training
  • What Do You Need as a Family Caregiver: Availability and Other Responsibilities
  • What Do You Need as a Family Caregiver: About Worries

Brief Assessment Scale of Caregivers of the Medically Ill

From the try this series: Family Caregiver's Preferences for Involvement in Care of the Hospitalized Elderly (tool and companion video)

AMA's Caregiver Self-Assessment Questionnaire

Supporting Family Caregivers: The Hospital Nurse's Assessment of Family Caregiver Needs (American Journal of Nursing, article and video)
 

Points to Consider: Has the family caregiver(s) and his/her current role in care been identified? What gaps in care does the needs assessment highlight? How will those gaps be met so that the patient's safety and care are assured?

To learn how family caregiver needs assessment was done by health care providers in TC-QuIC, see page 15 of the report.

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Medication Reconciliation: Working with family caregivers to garner additional information regarding medications, over-the-counter remedies, and herbals taken by the patient.

Tools:

NTOCC Medication Reconciliation Elements

CHAMP Scripts to Verify the Medications a Home Care Patient Is Taking

INTERACT Medication Reconciliation Worksheet for Post-Hospital Care

North Carolina Center for Hospital Quality and Patient Safety's Medication Reconciliation Toolkit

Care Transitions Intervention Medication Discrepancy Tool (MDT)

IPRO Medication Discrepancy Tool for Home Care

Medication Management Form (in English, Spanish, Russian, and Chinese)

NTOCC My Medicine List (in English, Spanish, and French)

Project RED medication list (adapt for family caregivers)

Points to Consider: Under the stress of illness or pain, even a fully alert and oriented patient may not recall or report all medications, dosages, and issues with medications. Family caregivers can help identify negative reactions associated with medication use and barriers to the current medication plan that should be accounted for as medications are changed or adjusted.

To learn how medication reconciliation involving family caregivers was done by health care providers in TC-QuIC, see page 19 of the report.

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Medication Management: Preparing the family caregiver for ongoing medication management, including knowledge of red flags, adverse reactions, medication efficacy, and who to call with questions or problems, regardless of the next setting of care.

Tools:

Preparing Family Caregivers to Manage Medication: A Guide for Health Care Providers

Next Step in Care and Centers for Medicare and Medicaid Services (CMS) video series on medication management

MetLife Medications and the Older Adult

Medication management guides for family caregivers

For medication lists, see Medication Reconciliation

Points to Consider: According to the needs assessment of the family caregiver(s), does the medication regimen work positively with the availability of the family caregiver who deals with medications? What understanding and experience with medication management does this family caregiver have? What staff is in the best position (availability when the family caregiver is available, other responsibilities, knowledge base, communication skills) to work together with the family caregiver regarding medication management?

To learn how training with family caregivers on managing medications was done by health care providers in TC-QuIC, see page 21 of the report.

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Identifying and eliminating gaps in care: Determining the types of care required by the patient, matching these types of care with the identified availability and capabilities of this specific family caregiver, and formulating options for post-discharge care.

Tools:

From the try this series: Informal Caregivers of Older Adults at Home: Let's PREPARE

Discharge planning:

  • Hospital Discharge Planning - First Steps with Family Caregivers
  • Hospital or Rehabilitation Discharge Planning Elements
  • Home Care Discharge Elements

Points to Consider: Comparing the patient's anticipated care needs with the needs assessment of the family caregiver(s) can illuminate potential problems that can be accounted for in the discharge plan (or ongoing care plan). Once realistic options for post-discharge care have been identified,  how will the options be discussed with the family caregiver(s)?

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Discussing discharge options with the family caregiver: Preparing the family caregiver with advance knowledge about the patient's discharge (including date) and with various options for care, given the patient's and caregiver's identified needs. (For more, see Needs Assessment.)

Tools:

Discharge Planning Is a Family Affair

Going Home: What You Need to Know (discharge checklist for family caregivers)

Family Caregiver's Planner for Care at Home

Family Caregiver in Crisis: Using Next Step in Care

Family caregivers have varying degress of understanding regarding various types of care, how each care type is paid for, and what impact each will have on their own roles, even if they have experienced them in the past. Health care is changing rapidly, and this means significant changes in care options. Below are transition-specific tools that health care providers can use with family caregivers to share up-to-date information needed to make informed decisions.

Leaving the hospital, going to inpatient rehabilitation

Leaving the hospital, going home

Leaving inpatient rehabilitation

From rehabilitation to long-term care

Going to the Hospital

Hospice

Points to Consider: Once realistic options for post-discharge care have been identified,  how will the options be discussed with the family caregiver(s)? Although a different person may be the decision-maker (such as the patient or someone with other legal authority, such as a power of attorney or health care proxy), the family caregiver will be a primary implementer of the care plan.

To learn how discussions of discharge options with family caregivers and preparation for discharge were done by health care providers in TC-QuIC, see page 23 of the report.

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Communicating with the next care setting: Planning a successful transition by providing the next setting of care (such as rehab, home with home care services, hospice, or home with follow-up by the patient's own doctors or clinics) with the information needed to seamlessly begin care.

Tools:

Project BOOST's Patient PASS: A Transition Record (adapt for family caregiver)

INTERACT Nursing Home Capabilities List

Project RED's Postdischarge Components of the RED (see page 23)

Points to Consider: When new services start, do the health care providers have information from your setting ready at hand and easy to use? Or are family caregivers the default reporter and historian? Is the next setting seeking additional information after the patient has transferred? Do patients come back to your setting, or back to the hospital, because the next setting of care was not appropriate for the patient's care needs? Remember, confirming the abilities of the next setting to provide care for this individual patient via direct communication can be critical. Early and effective communication regarding the patient's anticipated needs can facilitate a solid plan with better chance of success.

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Effective handoff communication with the next setting of care: Coordinating a successful transition to the next setting (whether to another agency or facility, another unit within the same facility, or to home under the care of community physicians) by employing effective handoff communication.

Tools:

SBAR Technique for Communication

INTERACT's SBAR Communication Form and Progress Note

INTERACT's Hospital to Post-Acute Care Transfer Form

Project RED's Postdischarge Components of the RED (see page 23)

INTERACT's Nursing Home to Hospital Transfer Form

Project BOOST's Patient PASS: A Transition Record (adapt for family caregiver)

Points to Consider: Effective handoff communication is a skill that needs to be learned and practiced. Verbal and written reports that are unorganized are often ineffective and can delay the implementation of essential care, which can put patients at risk for adverse events. 

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Reviewing discharge instructions with the family caregiver: Aiming to make the final discharge instructions with the family caregiver a simple review of what has already been taught.

Tools:

Project BOOST's Discharge Preparation Education Tool (DPET) (adapt for family caregiver)

Teach Back

Going Home: What You Need to Know (discharge checklist for family caregivers)

Family Caregiver's Planner for Care at Home

Medication Management Form (in English, Spanish, Russian, and Chinese)

Points to Consider: Education is about the right information learned at the right time by the right person. Discharges, which are often characterized by stress and confusion, are NOT the right time to begin education and training. The family caregiver who will be doing or assisting with those tasks may not even be present at discharge. A review of previously taught information can be done via telephone with the appropriate family caregiver.

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Follow-up with the next setting of care: Preventing or alleviating problems with patient transitions through effective post-discharge communication with the next setting of care.

Tools:

Staff Survey: Closing the Loop

Points to Consider: Was the next setting of care able to pick up the patient's care seamlessly, given the information sent? Were there delays in care provision due to inadequate or ineffective communication regarding the patient's care needs or the family caregiver's role, availability and other responsibilities, and traning needs?

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Follow-up with the family caregiver: Contacting the family caregiver after discharge to learn about and address any critical issues that might lead to adverse outcomes for the patient or unecessary burden on the family caregiver.

Tools:

Project RED's How to Conduct a Post-Discharge Follow-up Phone Call

Care Transitions Intervention's Care Transitions Measure (CTM)

Teach Back

Points to Consider: Now that the patient has transitioned to another care setting (home, inpatient rehab, etc.), does the family caregiver still have a good understanding of the medication regimen, red flags, and what actions to take regarding red flags or other concerns? Have follow-up appointments been kept, or does the family caregiver need assistance? Does the family caregiver understand the purpose of the follow-up appointments? The person following up with the family caregiver should have a strong knowledge of both the patient's and the family caregiver's needs and situations.

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