Introduction

The early days of discharge planning were slower, less intense, and typically occurred after patients had completed the majority of their recovery. For the most part, choices for continuing care outside the hospital were limited to long-term care and simple home care. Other levels of care were far more limited — or non-existent. Patients discharged toward the completion of the recovery period went home less sick, less fragile, and in less need of a lot of care in the home. Those days are clearly over.

In today’s healthcare world, patients leave the hospital after they have achieved a minimal amount of recovery or stability, with the expectation that they will continue to recover in less expensive settings. One of those settings is the home. While many of the patients will receive some episodic home care, eventually that care will end and other support may be needed. This scenario is particularly true for the elderly and patients with chronic conditions or multiple comorbidities. This month, we will talk about the role of the family caregiver in supporting patients as they transition home, what the role is really about, and the role of the case manager in supporting and educating family caregivers.

Who Are Family Caregivers?

Family caregivers are those who care for ill or frail family members or friends. They are not paid for these services, which is what differentiates them from nursing attendants or home health aides. One misconception about family caregivers is that they only support the patient in the home environment. In actuality, someone can be a family caregiver in the home, the hospital, a rehabilitation unit, a long-term care facility, or anywhere the patient is located.

In fact, a person is a family caregiver if they:

  • take care of someone who has a chronic illness or disease,
  • manage medications or talk to doctors and nurses on someone’s behalf,
  • help bathe or dress someone who is frail or disabled, and
  • take care of household chores, meals, or bills for someone who cannot do these things for themselves.

Family caregivers do not suddenly appear after the patient goes home. Typically they are involved in the patient’s life and may visit them in the hospital. As case managers, we must be on the lookout for family caregivers and ask the patient pointed questions about people in the patient’s life. If we simply ask the patient if they have any family caregivers, the patient may not know what we mean. How do family caregivers know that this is the role that they are playing? In today’s complicated healthcare environment, “taking care” goes far beyond what any family members had to do in the past. People are living longer, many with one or more chronic condition that they may not be able to manage independently. Or they may not be able to manage household chores, bills, or similar items. They may say, “I am not a caregiver. I am a daughter, partner, friend, or wife.”

Family Caregivers and Healthcare Professionals

As case managers, we must view the family caregiver as a member of the patient’s interdisciplinary care team. As such, it is imperative that we, the professionals, work together with the patient’s family and family caregivers from admission to discharge and beyond. There are some critical points at which this need is particularly urgent. Specifically, it is during times of transition for the patient that this need comes to the forefront, and managing transitions means excellent communication at each and every patient handoff. In fact, communication is the key to all transitions for patients, families, and family caregivers.

In order to accomplish good communication between healthcare professionals and family caregivers, case managers and social workers must ensure the family caregiver is given a basic understanding of how things are expected to work in the next setting to which their family member is transitioning, including transitions to home. They must be given the opportunity to ask questions when they are ready. Each time a question is asked, consider this a “teachable moment” between you and the family caregiver. Supplement your teachable moment with guides and other written information to help them understand any new information. Provide online links that might supplement their education as well. Be sure to acknowledge that they are a family caregiver and they have a right — indeed, should have an expectation — of receiving this information.

When Does Caregiving Start?

The role of the caregiver may begin following a crisis that the patient has experienced, such as a hip fracture, a stroke, or an accident. These crises may present a sudden and unexpected need from the patient. Conversely, the patient’s needs may have occurred slowly due to a gradual decline in the patient’s condition. These kinds of declines may or may not have been obvious to the family caregiver, so never assume he or she saw it coming. Ultimately it is not the event itself, but what happens after the event, that will require the family caregiver to step in.

It is important that caregivers see themselves as family caregivers so they can act on their rights and authority as such. These rights include the right to receive information about the family member or friend’s condition, that they be involved in decision-making about the patient’s care, and that they see themselves as an essential partner on the healthcare team and be educated in providing care. Additionally, they will have access to services that they might otherwise miss, and in some states may even be protected from job discrimination.

Caregiving Should Never Be a Complete Surprise

Case managers and social workers may assume that the family caregiver is willing and able to help. In fact, we make many assumptions in this regard. As managers of the discharge planning process, we may assume that the individual will provide the extensive care needs in the patient’s home. There may have been family caregivers who had helped in the past, and so we assume they will be able to help at the same level again. In fact, we must take the family caregiver’s situation, availability, and willingness into consideration at each and every patient transition.

These transitions may include through the hospital experience to the community, through the community experience, through a disease process, through a situation, and/or from one provider to the next at each juncture. After all, it’s all about transitions, and effective transitions are the core business of hospitals and a core responsibility of the case management department and staff.

Educate the family caregiver about the patient’s condition. Help him or her to understand what the patient’s insurance does and does not pay for. Review or create necessary legal documents. Be sure to consult with other family members regarding their feelings concerning medical care, living arrangements, how the caregiving tasks can be divided, and how to pay for anything that the insurance doesn’t cover.

Discharge Planning Evaluations Must Include the Family Caregiver

The Centers for Medicare & Medicaid Services (CMS) standard on discharge planning states the following three things:

  • The hospital must provide a discharge planning evaluation to the patients, to other patients upon their request, the request of another person acting on their behalf, or the physician.
  • The discharge planning evaluation must include an evaluation of the likelihood of a patient needing post-hospital services and the availability of those services.
  • The evaluation must include an evaluation of a patient’s capacity for self-care or of the possibility of the patient being cared for in the environment from which he or she entered the hospital.

As you review each of these elements it becomes clear that you cannot conduct an effective and complete evaluation without assessing the family caregiver when the discharge plan calls for one. This is particularly true if the very first transition is from the hospital to home. It is likely that the need for a family caregiver will involve a greater amount of education. But even before education, you must be sure that the family caregiver is a viable option to support the plan to home. If they are not, you will need to readjust your plan or find a different family caregiver. CMS is identifying the family caregiver as an important aspect of the discharge planning process. CMS’s rules require the following:

  • patient’s discharge plan addresses patient’s goals of care and treatment preferences,
  • medical staff would discuss patient’s post-acute care goals and treatment preferences with patient, patient’s family, or their caregiver/support persons (or both) and subsequently document these goals and preferences in the medical record, and
  • these documented goals and treatment preferences to be taken into account throughout entire discharge planning process.

In addition, CMS expects that the hospital:

  • would be available to discuss and answer patients’ and caregivers’ questions about post-discharge options and needs,
  • not make decisions on post-acute care services on behalf of patients and their families and caregivers, and instead focus on person-centered care to increase patient participation in post-discharge care decision-making (person-centered care focuses on the patient as the locus of control, supported in making his or her own choices and having control over daily life),
  • discharge instructions be carefully designed to be easily understood by the patient or the patient’s caregiver/support person (or both),
  • as a best practice, should confirm patient or patient’s caregiver/support person’s (or both) understanding of the discharge instructions, and
  • ensures that patients or caregivers (or both) should be informed, in advance of hospital discharge, of anticipated need for filling outpatient (discharge) prescriptions, and have a plan for how they will obtain those medications.

It is clear from the elements listed above that discharge planning should and must include families and family caregivers. CMS goes on to state that:

  • patient or patient caregiver capability and availability must be considered,
  • availability and access to non-healthcare services must be considered — including home and physical environment modifications, assistive technologies, transportation services, meal services or household services (or both), including housing for homeless patients, and
  • the discharge plan must address patient’s goals of care and treatment preferences with documentation of such.

Meeting the CMS Rules

In order to meet these requirements, each case manager and social worker must complete an assessment of the family caregiver. Examples of tools that are available to assist you in completing these assessments can be found on the following websites:

  • Medicare’s “Your Discharge Planning Checklist,” available at: http://bit.ly/2lcSbXl.
  • Agency for Healthcare Research and Quality (AHRQ)’s “Taking Care of Myself: A Guide for When I Leave the Hospital,” available at: http://bit.ly/2kQiJRS.
  • Consumers Advancing Patient Safety (CAPS) “Taking Charge of Your Healthcare: Your Path to Being an Empowered Patient” toolkit, available at: http://bit.ly/2lcNmND.

Length of Stay and Family Caregivers

Family caregivers sometimes complain that they are not involved in the discharge planning process and/or are not given details about the plan. When the family caregiver is not involved early on, this can result in delays as you begin to transition the patient, thereby increasing the length of stay. Length of stay can also be negatively affected when a late assessment of the family caregiver determines he or she cannot support the patient’s needs in the home environment, and a new discharge plan must be initiated.

Proactively involve informal and formal family and family caregivers from the time of admission and each day thereafter until the point of discharge. Assess them as early in the stay as is appropriate, but don’t wait until the point of discharge. If the patient needs additional family caregivers and/or paid assistance, this may take time and increase the length of stay.

Be sure to educate the family caregiver along the way as well, as many laypeople don’t remember much detail about discharge instructions. Written communication and community follow-up are very important.

Family Caregivers and Readmissions

Be sure the patient’s needs are hardwired whenever possible. Discuss advance directives in terms of two critical areas. First, discuss the kinds of treatments that the patient does or does not want. Determine who will be the person to make healthcare decisions if the patient is unable to do so. Addressing these kinds of issues can prevent unnecessary readmissions to the hospital if the patient’s condition worsens.

Be sure that the family caregiver understands that follow-up appointments are important, and that they must be scheduled and kept. These may include the patient’s primary care provider as well as any specialists involved in the patient’s care. Routine visits to the primary care provider can reduce the likelihood of the patient experiencing an acute exacerbation of their illness that might result in a readmission to the hospital.

Other important visits might include a series of appointments for physical or occupational therapy. Be sure that the family caregiver can provide or obtain transportation to all healthcare appointments outside the patient’s home.

One of the most troublesome areas that leads to many readmissions is mismanagement of the patient’s medication regimen in the home. Not done intentionally, it is possible that the family caregiver might either over- or under-medicate the patient if he or she does not have a clear understanding of the patient’s medications, when they are taken, what they are for, and any side effects. Help the caregiver to understand prescription versus over-the-counter versus herbal medications. Assist him or her in developing a process for ordering and picking up refills either at a pharmacy or via mail order. Be sure the caregiver understands that he or she must read all medication labels and follow all instructions. It is critical to give the patient the right medication at the right time and in the right amount.

Other things to teach caregivers about medication includes the following:

  • types of side effects such as nausea and vomiting, confusion, or dizziness,
  • checking labels for expiration or “use by” dates,
  • making sure no one else takes the patient’s medications, and
  • keeping all medications in a safe place.

Medication reconciliation in the home is vital as well, particularly during times of transition when the medications or doses may have changed.

  • Keep an up-to-date medication list.
  • Keep this list nearby and easily obtainable.
  • Bring the list each time you see a doctor or go to the hospital.
  • Discuss all the medications with the doctor, including side effects or other problems.

Explain to the family caregiver that it can be easy to forget to take medications on time, even more so when the family member needs to take two or more medications. It may help to use special pill boxes that have sections for each meal and for bedtime. Some boxes even beep when it is time to take the medication. Ask about automatic pill boxes that can be set to open at specific times.

Summary

There are so many ways in which family caregivers can support the care of your patient in the home environment, but in order to do this adequately case managers and social workers must ensure the family caregiver is ready, willing, and able to support the patient’s care needs. Ultimately, he or she will need to understand that the patient’s condition may get better or worse, that new complications may arise, and that a new hospitalization may mean new medications or treatments. Family caregivers are a wonderful asset — use them wisely.