Family Caregivers: A Key Component of the Discharge Planning Process
Toni Cesta, PhD, RN, FAAN
Introduction
Case managers have been an integral part of the discharge planning process for decades. Typically this process has involved an in-depth assessment of the patient, which has included their clinical as well as psychosocial, financial and living situations. When hospital lengths of stay were significantly longer, patients went home at a higher level of recovery than they do today. Discharge planning was less intense and less dependent on others to assist in the recovery process. Today, patients leave hospitals at a minimum level of recovery and continue to recover at home or at another, lower level of care. For those patients who are discharged home, they very often need someone in the home to help them with activities of daily living such as bathing, shopping, managing finances, medication administration and overall supervision. This need is often being filled by individuals we know of as family caregivers.
What Is a Family Caregiver?
A family caregiver can be a relative, friend or neighbor who provides assistance to individuals with either physical or behavioral health issues. Family caregivers are not paid for this work. This differentiates them from other individuals who perform this work for a salary, such as nurse attendants or aides. A study from 2010 showed that about 29% of all adult Americans are family caregivers (www.aarp.org/about-aarp/press-center/info-03-2010/caregiving_survey_release.html). I find this to be a surprisingly high percentage. Many of these caregivers are taking care of family members with dementia or Alzheimer’s. They perform a variety of tasks that take a large financial burden off the health system.
Imagine what might happen if suddenly there were no family caregivers to fill this vital gap in our healthcare system. Almost half of all family caregivers perform functions that are considered "nursing" or "medical" in nature. These include things like injections, wound care, and operating medical equipment such as pumps and drains, and monitors. While we place great responsibility on these individuals, while their loved one is in the hospital, we don’t always prepare them as adequately as we should for the tremendous responsibilities they will be assuming. While 30% of family caregivers are seniors themselves (U.S. Department of Health and Human Services [2001], presentation, Rockville: Agency for Healthcare Research and Quality), some are also children. It is believed that 1.4 million children between the ages of eight and eighteen care for an adult relative. It is good to know that in the case of child caregivers, most are not the sole caregivers in the family (National Alliance for Caregiving and the United Hospital Fund [2005], presentation, National Alliance for Caregiving and the United Hospital Fund). Another 15% are between the ages of 45 and 54 (U.S. Department of Health and Human Services [2001], presentation, Rockville: Agency for Healthcare Research and Quality) and many are also caring for their own children in addition to the family member they are caring for.
The role of the family caregiver can take place in any setting. While we typically think of it in terms of the home environment, family caregivers can perform this work in any number of settings. They may assist the patient in the hospital, on a rehabilitation unit, assisted living facility, or even in a long-term skilled nursing facility. The role of the family caregiver starts when the event or change happens and continues on after the event.
Who is the Family Caregiver?
When interviewing the patient and family, it may be that the family member or friend does not identify as a "family caregiver." The terminology may not be familiar to them. In addition, the patient may not recognize his or her own need for family caregiving. Therefore, as you begin the discharge planning assessment process, you will need to elicit this role from them through a series of specific questions. You may want to add these questions to your case management admission assessment tool so that you can be sure that the questions are always asked.
Examples of questions to ask the patient:
• Who helps you when you need to see the doctor in his office?
• Does anyone cook meals for you or shop for groceries for you?
• Who helps you organize your medications?
If the answer to any of these is yes, then you will need to gather additional information as to who this person, or people, are. Once you have identified them, you will want to reach out to them and interview them as well. Below, we will discuss some of the areas to review with the family caregiver as you interview them. Do not be surprised if the identified family caregiver is unwilling or unable to help once he or she is told that the family member will need extensive care in the home.
If patients answer no to any of these questions, you will need to add follow-up questions. If they indicate that no one assists them, you will need to determine whether they actually do need the help. One way to begin this part of the assessment is to determine what brought the patient to the hospital on this visit. Was it a medication-related issue, exacerbation of the illness, a missed doctor’s appointment, or some other failure in managing the patient’s care in the home? If any of these issues are identified, then it may be necessary to work with the patient in identifying a family caregiver. This may be particularly important for patients who don’t really need an aide or nurse assistant but do need some assistance as described. This may also be important for patients who may not have insurance coverage for this type of help.
Once the need or needs have been identified, then you can begin the process of identifying the caregiver.
The Rights of the Family Caregiver
It is important that family caregivers recognize themselves as such. Without this acknowledgement, they may not realize their rights and authority. Caregivers have the following rights:
• The right to get information about the family member’s condition.
• The right to be involved in decision-making about care.
• The right to be an essential partner on the health care team and to be educated in how to provide care.
• The right to find support services that they might otherwise miss.
• In some states, the designation of family caregiver can protect a person from job discrimination (check your own state’s regulations on this).
Case Management, Discharge Planning and Family Caregivers
When preparing a discharge plan for a patient, we sometimes make assumptions about the abilities and responsibilities that can be taken on by family members. This is due to a number of factors. Patients are in hospitals for much shorter lengths of stay, so that the burden of continuing care sometimes shifts to family members. In addition, adults are living longer, and a third of individuals over age sixty-five have at least one chronic illness. In addition, technical advancements for treating patients with acute or chronic conditions mean that these high-tech pieces of equipment are being used in the home more and more. While some patients may have home care visits, the home care nurse will probably not be present for all treatments that the patient may receive, and the family caregiver will become the primary person responsible for managing that treatment or procedure. For lay people, this equipment can be intimidating or overwhelming.
Family caregivers may be shown the equipment or procedure while the patient is in the hospital, but in the home environment they may forget what they have learned. Home care can play an important role in re-educating the family caregiver and should always be included in the discharge plan for these types of patients. Never assume that the family caregiver is "set." What may seem simple in the controlled environment of the hospital, with the nurse standing nearby, can be daunting in the home with no health care professional there to assist or answer questions. So, always include home care in your discharge plan!
It is also critical to assess the family caregiver for availability, willingness, readiness and respite needs. Ask the family caregiver if he or she is available at the times that the patient will need the treatment or procedure. If the treatment or procedure is more than once a day, it may not be realistic for the family caregiver to perform this function. In cases where the intervention is more than once a day, another level of care may be a better option, such as sub-acute. The first important question, therefore, is to determine the level of burden that the patient’s needs will place on the caregiver and determine whether the caregiver will be realistically able to manage from an availability perspective.
Second, determine family caregivers’ willingness to deal with the specific issue at hand. They may be able to manage a simple dressing, but a technically complex piece of equipment, such as a pump, may overwhelm them. They may have trouble with wounds or injections. Do not assume that the family caregiver can manage all interventions equally. Spend time discussing the patient’s specific needs in detail, so that the caregiver can make a realistic choice. Help caregivers understand that their inability to perform the specific task does not mean that they care any less about their friend or relative. It simply means that they are not equipped to manage the patient’s specific need(s). After all, they are most likely not a health care professional, and many of the tasks at hand may be daunting, to say the least.
Another question to ask has to do with readiness. Readiness can be a state of mind, or an issue of scheduling. Family caregivers may need some time to adjust to the new tasks at hand. Or they may need to adjust work schedules or other family obligations they may have related to children or other issues. They may need to adjust work hours. Whatever the issues, do not assume that they are immediately ready to start their new role. Failure to determine readiness may result in the patient’s return to the emergency department as the home care plan fails to be implemented.
Finally, you should evaluate and plan for any respite needs that the family caregiver may have. The caregiver should have at least two days off per week, and other scheduled off time as needed. This may mean that a second family caregiver will need to be identified. The need for respite care will greatly depend on the anticipated length of time that the caregiver’s services will be required. Although caregivers may believe that they do not need respite care, it is your responsibility to help them to understand that over time they may get fatigued and need a break. In addition, life events come up, and a replacement may be necessary on occasion.
Remind family caregivers that they should be thoughtful and take their time in making any serious lifestyle changes such as quitting their job, moving or selling their house. They should set limits for themselves in terms of what they can do. Finally, they should let go of guilt if they cannot do it all!
Family Caregivers and Health Care Professionals
For existing caregivers, care transitions will be a difficult time. As the patient moves through the continuum of care, care providers change, care plans change and patient needs change. Therefore, these transitional times are particularly important in terms of engaging the family caregiver. For example, as the patient is discharged home from the hospital, you may assume that the family caregiver is ready to take care of them if they had been the caregiver prior to the current admission. However, you must consider the fact that the patient’s medical and other needs may have changed during the current phase of illness. The family caregiver should be brought up to speed on all aspects of what transpired while the patient was in the hospital. This information will help them to more adequately care for the patient on return home.
Transitions can be very disruptive and upsetting for family caregivers. With each transition comes new providers, rules and regulations, new financial requirements and new plans of care.
Even if the plan of care has not changed, it is still important to review the course of care while the patient was hospitalized so that the family caregiver understands what may have caused the current admission and help to avoid another similar one. Communication with family caregivers is key and should not be overlooked.
If the patient is going to sub-acute, the family caregiver may still remain involved with the patient’s care while the patient is receiving rehabilitation. It is important to explain the level of care that the patient will be receiving and what roles the caregiver may play in that setting. Ultimately, it is likely that the caregiver will be caring for the patient in the home again, so sharing of information during these transitions is also important.
Information to Be Shared with the Family Caregiver
The following information should be included as you communicate with and educate the family caregiver:
• a basic understanding of how things are expected to work in the new setting;
• a chance to ask questions when they are ready to ask them;
• any guides or other written materials;
• acknowledgment that they are a family caregiver!
Additionally, the family caregiver should be educated about the family member’s condition, whether it’s an acute or chronic condition. They should be schooled on what the family member’s insurance will pay for and what it will not pay for. This is also a good time to assist or direct them in the creation or review of any legal documents, including advance directives or health care proxies. They should consider obtaining a durable power of attorney at this time if the family member cannot pay bills or make financial decisions.
Encourage the family caregiver to consult with other family members regarding concerns and feelings. Topics to review would include medical care, living arrangements, how caregiving tasks can be divided, and how to pay for what insurance doesn’t cover. Encourage all the family members to continue some of their previous activities in order to not allow family caregiving to become overwhelming. Work through issues such as how they will manage their job, or care of immediate family and children, with family caregiving. Finally, find out what is available in the community for the family caregiver, other family members, and the patient.
Summary
The role of the family caregiver may not be for a short time period. It could go on for months or even years. As case managers, our role is to ensure that we have provided our family caregivers with all the information that they may need to care for their loved one at home or in another care setting. This will take some time, but it is time well spent and will reduce the likelihood that an unnecessary trip to the emergency room will take place. Remind caregivers to know their strengths, limitations and to always be flexible!
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