A trip to the hospital can be an intimidating event for patients and their families. As a caregiver, you are focused completely on your family member or friend’s medical care, and so is the hospital staff. You might not be giving much thought to what will happen when your friend or family member leaves the hospital.
Everything about this transition – whether the discharge is to home, a short-term rehabilitation (“rehab”) center, or a residential nursing facility – is critical to the health and well-being of the person you care for. Studies have found that improvements in hospital discharge planning can dramatically improve the outcome for patients as they move to the next level of care.
Patients, family caregivers, and health care providers all are involved in maintaining a patient’s health after discharge. Yet, while it’s a significant part of the overall care plan, there is a surprising lack of consistency in both the quality and process of discharge planning across the health care system.
This fact sheet offers information, tools, and resources to support you and the person you care for during this critical time, including:
- Keys to a successful transition from hospital to home or care center
- Suggestions for improving the process
- Checklists for caregivers to help ensure the best care
- Tips to remove barriers and encourage meaningful communication between you, the doctor, and other health care practitioners
But first, let’s cover a few legal topics that will be relevant to you as a caregiver.
Legal Issues Affecting Caregivers
HIPAA: The Health Insurance Portability and Accountability Act
You may have heard about HIPAA restrictions. HIPAA rules impact the sharing of information about patients in medical care. Although when the act was first initiated, there was some confusion about how much information families and caregivers could receive about a patient’s medical situation, it is now clear that information must be shared.
- The US Department of Health and Human Services says: If the patient is present and has the capacity to make health care decisions, a health care provider may discuss the patient’s health information with a family member, friend, or other person if the patient agrees or, when given the opportunity, does not object.
- A health care provider also may share information with these persons if, using professional judgment, he or she decides that the patient does not object.
- In either case, the health care provider may share or discuss only the information that the person involved needs to know about the patient’s care or payment for care. Particularly when you are named in an Advance Directive, there should be no problem with your being able to receive information about, and speak for, your friend or family member. Check to be sure that a current copy of the Advance Directive is in the patient file. Patients can also sign an authorization form that gives health care providers permission to speak with you.
Advance Health Care Directives
These documents clarify who will speak for patients if they cannot speak for themselves.
- The documents may be referred to as living wills, health care proxies or Durable Powers of Attorney for Health Care.
- These documents can only be completed when a person is competent to do so (if someone has dementia, talk to the doctor about whether they still are competent to sign a legal document).
- They include instructions on the type of care individuals’ desire if they are very ill or dying.
- Many doctors’ offices and hospitals have forms available.
Caregiver Advise, Record, Enable (CARE) Act
The CARE Act is in place to ensure hospitals aren’t discharging patients without preparing family caregivers. With the CARE Act, hospitals must do three things:
- Record the name of the family caregiver on the medical record of the person being cared for.
- Inform the family caregivers when their friend or family member is to be discharged.
- Provide the family caregiver with education and instruction for the medical tasks he or she will need to perform for the patient at home.
The CARE Act has been signed into law in the majority of U.S. States as well as the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. AARP (American Association of Retired Persons) championed this act and continues working toward making it a law in every state.
AARP has a helpful printable fact sheet on the CARE Act: https://www.aarp.org/content/dam/aarp/ppi/2019/03/the-care-act-implementation-progress-and-promise.pdf.
You can also download your free CARE Act wallet card: https://www.aarp.org/caregiving/local/info-2017/care-act-aarp-wallet-card.html. Print one for you and one for the person you care for to keep in your wallets next to insurance cards, so information on the CARE Act is at your fingertips when you need it.
Language and Translation Services
You and your friend or family member have the right to have an interpreter present – it’s important that language not be a barrier to clear communication.
- If you or the person you care for prefers speaking in a language other than English, be sure to request a professional interpreter. Hospitals and clinicians are legally required to provide that service to you, so if a professional interpreter is unavailable, the health care organization should make arrangements for translation services via video or telephone.
- Written materials must be provided in your preferred language as well.
- Studies have shown that numerous, often dangerous errors can be made in home care when language is not taken into account at discharge. More than 200 different languages are spoken in the US, with approximately 25 million people speaking English at a level below “very well.” This is further complicated when the discussion includes complex medical information.
- Fortunately, based on the Civil Rights Act of 1964, patients have the right to the services of an interpreter—including sign language interpreters—in health care settings. The availability of certified interpreters able to translate medical/health care language still varies widely from state to state, and some families simply use a relative to provide translation. But when complicated medical information is delivered or treatment decisions must be made, that may not be the best choice.
Quality of Care
If you have concerns about the quality of care a hospital, rehab, or nursing facility provides, you have a right to speak up—while it’s happening as well as after being discharged.
- Your first step:
Bring your complaints to the doctor and nurses, if possible. Be specific about your concerns and ask them how they will resolve the issues. Another option is requesting a conversation with a hospital social worker who has experience addressing problems and connecting patients with the right resources. Hospitals usually have a department of Patient Relations, Patient Advocates, or Customer Service; you can also make a complaint or raise your concerns with them.
- If the person you care for is covered by Medicare:
You can file a complaint about their care with your State’s Quality Improvement Organization (QIO) Here’s a link to a site listing QIOs and the states they cover: https://www.ahqa.org/ahqa-member-organizations/. QIOs act on behalf of Medicare to address care complaints from people covered by Medicare. QIOs typically take care of issues such as getting the wrong medication, having the wrong surgery, or receiving inadequate treatment. You can also find your QIO by calling 1-800-MEDICARE.
- If not covered by Medicare:
Report your concerns to your state’s department overseeing health care institutions or medical licensing board. You can also make complaints to the Joint Commission, an independent nonprofit that accredits health care organizations. You can also contact your health insurance provider or state department of health insurance if you think the patient is not getting the care they need.
- At a rehabilitation or nursing home facility:
Contact the ombudsperson. Go to theconsumervoice.org, and click Get Help to find the contact information for your local ombudsman program. That is the recommended first step to addressing quality of care in rehab and residence facilities.
- If you think your friend or family member is not medically ready to be discharged:
There are steps you can take. We address this concern in detail a bit further into this fact sheet (see the section: What if You Feel It’s Too Early for Discharge?).
You can find more guidance about how to complain and be heard on the website of the Agency for Healthcare Research and Quality: https://www.ahrq.gov/patients-consumers/patient-involvement/how-to-complain.html.
Now let’s get back to preparing for discharge.
What Is Discharge Planning?
According to Medicare, discharge planning is a process that determines the kind of care a patient needs after leaving the hospital. Discharge plans should ensure a patient’s transition from the hospital to another medical facility or to their home is as safe and smooth as possible.
Only a physician can authorize a patient’s release from the hospital, but the actual process and preparation of discharge planning can be completed by a number of people. Some hospitals have a dedicated discharge planning manager on staff, but your point person could also be a social worker, nurse, or other hospital representative. Ideally, and especially for the complicated medical conditions, discharge planning is done with a team approach.
The basics of a discharge plan are:
- Evaluation of the patient by qualified personnel
- Discussion with the patient and/or their representative and involving them in the planning
- Reconciling medications – a thorough review of prescriptions, plus comparing pre-hospitalization meds with post-discharge meds to be certain there are no duplications, omissions, harmful side effects, or drug interactions.
- Planning for homecoming or transfer to another care facility
- Determining the need for caregiver training or any other support
- Referrals to a home care agency and/or appropriate support organizations in the community
- Arranging for follow-up appointments or tests
- Who to contact if you need help – ensuring you have the name and email address of your go-to person for care questions, as well as a phone number where you can get help 24 hours a day, including weekends.
The planning discussion will cover everything from the types of care that will be required to equipment needs, from diet and meal planning to medication administration. Even transportation and chores should be covered.
Why Is Good Discharge Planning So Important?
The main reason discharge planning is such a priority – not just for hospitals and care teams, but also the U.S. Centers for Medicare and Medicaid Services – is this:
Effective discharge planning can decrease the chances the person you care for is readmitted to the hospital.
A thoughtfully developed plan aids recovery, ensures medications are prescribed, and given correctly, and adequately prepares you to take over your friend or family member’s care – all of which contribute to care that reduces the chance of readmissions.
The challenge: No single, consistent approach
Not all hospitals are successful in this. Although both the American Medical Association and the Joint Commission on the Accreditation of Health Care Organizations (JCAHO) offer recommendations for discharge planning, there is no universally utilized system in US hospitals.
What we do know is research indicates that excellent planning and good follow-up can:
- Improve patient health
- reduce readmissions
- decrease health care costs.
The Caregiver’s Role in the Discharge Process
The discharge planner will look to you, the caregiver, for history and insights about your friend or family member. As their advocate, you are likely to play a central role, managing many vital tasks:
- collect information
- speak to doctors
- transport the patient
- ensure lab tests are done
- pick up, prepare and give medications
- research treatment options and risks
- handle insurance
As discharge nears, things can feel rushed at the hospital; in that rush, it can be easy to forget what needs to be discussed. If you’re feeling hurried, it is reasonable to ask the discharge planning team to slow things down so nothing is overlooked.
You may want to print out and bring this post with you to the hospital; if for some reason, the discharge planning team doesn’t cover these subjects, you should feel comfortable raising them yourself.
- The discharge planners should discuss with you your willingness and ability to provide care.
You may have physical, financial, or other limitations that affect your caregiving capabilities. You may have other obligations such as a job or childcare that impact the time you have available. It is extremely important to tell hospital discharge staff about those limitations.
- It is essential that you get any training you need in special care techniques.
Some of the care your friend or family member needs might be quite complicated. Your discharge planning manager should ensure you know what is required with wound, feeding tube or catheter care, procedures for a ventilator, or transferring someone from bed to chair (and that you know how to get the equipment required for these tasks). Request all instructions and guidance are provided in writing. If the hospital has video resources for specific tasks (wound care, for example), ask them to include links to those in the discharge instructions.
- If the person you care for has memory problems caused by Alzheimer’s disease, stroke, or another disorder, discharge planning becomes more complicated.
You may need to remind the staff about special care and communication techniques needed by your friend or family member. Even without impaired memory, older people often have hearing or vision problems or are disoriented when they are in the hospital, which means these conversations are difficult to comprehend. They will need your help and patience.
Discharge to home: Finding the help you need
Listed below are common care responsibilities you may be handling for your friend or family member after they return home:
- Personal care: bathing, eating, dressing, toileting
- Household care: cooking, cleaning, laundry, shopping
- Health care: medication management, physicians appointments, physical therapy, wound treatment, injections, medical equipment and techniques
- Emotional care: companionship, meaningful activities, conversation
There is no single best path for lining up the help you will need. Patients and caregivers turn to many different sources for support.
- The community.
Community organizations can help with transportation, meals, support groups, counseling, and possibly a break from your care responsibilities to allow you to rest and take care of yourself (also known as respite care). Finding those services can take some time and several phone calls. The discharge planner should be familiar with these community supports, but if not, your local senior center or a private case manager might be helpful. (See the Resources section at the end of this Fact Sheet.) Family and friends also might assist you with home care.
- Home health professional services.
Hiring in-home help is an option – one that takes time to research options, check references and make decisions that often include family members. Out of necessity, hiring decisions are often made in a hurry at the time of discharge. You might be handed a list of agencies – but even with help, selecting in-home help is not something to be rushed. Start discussions around discharge plans as soon as possible after admission — that will provide you time to research your options while your friend or family member is cared for in the hospital. If medically necessary, the doctor may authorize short term Home Health services when your family member is discharged.
A few notes about in-home help and finding the right fit:
- Think about the needs of the person you are caring for as well as your needs as a caregiver – including language and cultural background.
You have a choice between hiring an individual directly or going through a home care or home health care agency. Part of that decision may be affected by whether the help will be “medically necessary” (i.e., prescribed by the doctor), and therefore paid for by Medicare, Medicaid, or other insurance. In that case, they will most likely determine the agency you use.
- In making your decisions, consider the pros and cons of your options. Home health care agencies handle paperwork for taxes and salary, ensure substitutes will be available if the worker is sick, and may provide access to a broader range of skills. On the other hand, if you hire an individual directly, there may be a more personal relationship, and the cost is likely to be lower. In either case, try to get recommendations from nurses, social workers, friends and others familiar with your situation.
Discharge to a Facility
If the patient is being discharged to a rehab facility or nursing home, effective transition planning should do the following:
- ensure continuity of care
- clarify the current state of the patient?s health and capabilities
- review medications
- help you select the facility to which the person you care for is to be released
Selecting the right facility
- Too often choosing a facility can be a source of stress for families.
You may have very little time and limited information to make your decision. The list of questions included in this fact sheet (below) will give you some direction as you start your search for a facility.
- Ask for help.
You can hire a private geriatric care manager (for whom you will pay an hourly fee) to help research and recommend facilities based on your friend or family member’s specific needs. A social worker can offer much needed advice and support. Consider the ratings and feedback from credible online reviews of rehab facilities and nursing homes in your area (see the Resources section of this Fact Sheet).
- Focus on quality of care.
While you need to be able to easily get to the facility, you may have to sacrifice some convenience for the sake of ensuring higher quality care for your friend or family member.
Paying for Care After Discharge
Understanding and navigating payment for after-hospital care needs:
- You might not be aware that insurance, including Medicare, does not pay for all services after a patient has been discharged from the hospital.
- Certain skilled care or equipment, however, may be covered – if it is determined by the doctor to be “medically necessary.”
- Gather your questions regarding payment and check directly with knowledgeable sources – the hospital, your insurer, or Medicare – to find out what might be covered and what you will have to pay for. Keep careful records of your conversations.
What if You Feel It’s Too Early for Discharge?
As their advocate, you have the right to appeal a decision to discharge your friend or family member from the hospital if you think it’s too early or if you think discharge to home is not safe.
- If you don’t think they are medically ready to leave the hospital, your first step is to talk with the discharge planner (often a social worker) and express your reservations. It is a good idea to put it in writing – email or text. The discharge planner will take your concerns to the doctor who makes this decision.
- While still in the hospital and if covered by Medicare or by a Medicare-managed care plan, your friend or family member can file an appeal about a discharge right on the spot. You should get a form from the hospital titled “An Important Message from Medicare,” which explains how to appeal a hospital discharge decision. Note: Appeals are free and generally resolved in 2 to 3 days. The hospital cannot discharge you until the appeal is completed.
- Formal appeals are handled through designated Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO). To get the phone number for your BFCC-QIO, visit www.Medicare.gov/contacts, or call 1-800-MEDICARE.
Basic Questions for Caregivers to Ask
Questions about the illness:
- What is it and what can I expect?
- What should I watch out for?
- Will we get home care, and will a nurse or therapist come to our home to work with my friend or family member? Who pays for this service?
- How do I get advice about care, danger signs, a phone number for someone to talk to, and follow-up medical appointments?
- Have I been given information either verbally or in writing that I understand and can refer to?
- Do we need special instructions because the person I care for has Alzheimer’s or memory loss?
What kind of care is needed? Who can help with this? How can I learn?
- Eating (diet restrictions? e.g., soft foods only, certain foods not allowed)
- Personal hygiene
- Transfer (moving from bed to chair)
- Mobility (includes walking)
- Managing Symptoms (e.g., pain or nausea)
- Special Equipment
- Coordinating the patient’s medical care and visits
- Household chores
- Taking care of finances
- Respite care / coverage (for caregiver breaks)
Questions when the person I care for is being discharged to the home:
- Is the home clean, comfortable, and safe, adequately heated/cooled, with space for any extra equipment?
- Are there stairs?
- Will we need a ramp, handrails, grab bars?
- Are hazards such as area rugs and electric cords out of the way?
- Will we need equipment such as hospital bed, shower chair, commode, oxygen tank? Where do I get this equipment?
- Who pays for these items?
- Will we need supplies such as adult diapers, disposable gloves, skin care items? Where do I get these items?
- Will insurance/Medicare/Medicaid pay for these?
- Do I need to hire additional help?
- Questions about training:
- Are there special care techniques I need to learn for such things as changing dressings, helping someone swallow a pill, giving injections, using special equipment?
- Have I been trained in transfer skills and preventing falls?
- Do I know how to turn my friend or family member in bed so they don’t get bedsores?
- Who will train me?
- When will they train me?
- Can I begin the training in the hospital?
- Questions when discharge is to a rehab facility or nursing home:
- How long is my friend or family member expected to remain in the facility?
- Who will select the facility?
- Have I checked online resources such as www.Medicare.gov for ratings?
- Is the facility clean, well kept, quiet, a comfortable temperature?
- Does the facility have experience working with families of my culture/language?
- Does the staff speak our language?
- Is the food culturally appropriate?
- Is the building safe (smoke detectors, sprinkler system, marked exits)?
- Is the location convenient? Do I have transportation to get there?
- For longer stays:
- How many staff are on duty at any given time?
- What is the staff turnover rate?
- Is there a social worker?
- Do residents have safe access to the outdoors?
- Are there special facilities/programs for dementia patients?
- Are there means for families to interact with staff?
- Is the staff welcoming to families?
Questions about medications:
- Why is this medicine prescribed? How does it work? How long will the medicine need to be taken?
- How will we know that the medicine is effective?
- Will this medicine interact with other medications? prescription and nonprescription? or herbal preparations that the person I care for is taking now?
- Should this medicine be taken with food? Are there any foods or beverages to avoid?
- Can this medicine be chewed, crushed, dissolved, or mixed with other medicines?
- What possible problems might I experience with the medicine? At what point should I report these problems?
- Will the insurance program pay for this medicine? Is there a less expensive alternative?
- Does the pharmacy provide special services such as home delivery, online refills, or medication review and counseling?
Questions about follow-up care:
- What health professionals will my friend or family member need to see?
- Have these appointments been made? If not, whom should I call to make these appointments?
- Where will the appointment be? In an office, at home, somewhere else?
- What transportation arrangements need to be made?
- How will our regular doctor learn what happened in the hospital or rehab facility?
- Whom can I call with treatment questions? Is someone available 24 hours a day and on weekends?
- Questions about finding help in the community:
- What agencies are available to help me with transportation or meals?
- What is adult day care and how do I find out about it?
- What public benefits is the person I care for eligible for, such as In-Home Supportive Services or VA services?
- Where do I start to look for such care?
Questions about my needs as a caregiver:
- Will someone come to my home to do an assessment to see if we need home modifications?
- What services will help me care for myself?
- Does my friend or family member require help at night and if so, how will I get enough sleep?
- Are there things that are scary or uncomfortable for me to do, e.g., changing a diaper?
- What medical conditions and limitations do I have that make providing this care difficult?
- Where can I find counseling and support groups?
- How can I get a leave from my job to provide care?
- How can I get a respite (break) from care responsibilities to take care of my own health care and other needs?
We hope this information is helpful to you in the important work you do as a family caregiver.
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