Despite the issues surrounding family interactions, most families are key to the recovery and adjustment of the resident in the long-term care facility. Visits and time spent with family are usually the most positive indicator of recovery apart from individual motivation. The more time families and friends can create for diversion and support, the more positive the outcome that can be predicted.
Visiting time must, of course, defer to medical care and the energy level of the resident. However, most facilities can adapt to the needs of individual families:
Are the resident and family late night people? Let staff know so they can make arrangements to visit privately and not disturb other residents.
Do the resident and family enjoy eating together? Families can alert staff to plans and eat in the dining room or in a private setting. Families should be aware of facility protocols related to outside food, use of dishes and flatware, and clean up. The dietary orders prescribed by the physician for the resident must be followed as well.
Is the family planning a large gathering? The facility can arrange a large, relatively private place.
Is there a birthday, anniversary, or other celebration? Staff would like to know and offer greetings as well.
Is the family planning a surprise? Be sure to include that information and tell only one staff person.
Visits are easier and take less energy with residents who are alert, oriented, and interactive. All residents, even those in a vegetative state, benefit from attention from family and friends. They get bored with staff and enjoy visits from nearly anyone. Most facilities have volunteers, students, interns, and others who visit residents, especially those with less support from family and friends.
Human beings don’t act in a straight line and conflict will occur among family members that staff will be unable to manage. While everyone may want to resolve the issues, the care of the resident is the primary concern at the facility.
Family members or guests who appear to be potentially or actually disruptive in the facility will be asked to have an escort to manage behavior, to visit at times or in locations when or where other family members or staff can supervise, or to cease visiting at all. Such steps are rare because family support is so important to recovery but if the conflict hampers recovery, the visits are counterproductive. If real harm to the resident is considered a possibility, staff may contact the Adult Protective Services department of the state aging office to report incidents and conduct an investigation.
Scenarios that may precipitate the above actions often involve untreated mental illness, including substance abuse, that is exacerbated by the medical crisis that led to the admission. Families have the responsibility to alert staff to the potential for inappropriate behavior and to attempt to contain disruptive activity if possible. Otherwise, families can expect that staff will act to protect all residents, staff, and the facility from inappropriate or dangerous behavior.
If a resident had a conflict-ridden relationship with a family member or friend prior to admission, the facility is not the place to resolve the situation. It would be best for the rest of the family to discourage such visits until they can occur at home or in a setting where the family can direct the interaction according to its own history.
Exposure of family interactions which were previously “secret” can be embarrassing to all family members. Relationships which were difficult but tolerable and marginally effective may now be shredded and open to judgment by others. Emotions are raw and guilt from events of years and decades past may surface. While very painful, these emotions and events actually create opportunities for individuals and families to begin addressing the conflicts and seek resolution. Social workers in larger facilities, support groups in facilities and the community, and individual therapists, available through insurance, are all able to assist individuals and families to begin a healing process even to the point of improving communication and interaction related to the care of the resident.
Staff in long-term care facilities will always assume without additional information that a resident will have significant interaction with her family of origin or intimacy—her parents, spouse, siblings, or adult children. Some residents have no remaining family of origin but has extended family members, e.g. cousins, nieces, nephews, or grandchildren, who have become her family of intimacy. In other situations, there is no one related by blood or marriage but close friends have taken on the important roles.
All of these relationships are legitimate to the medical and long-term care staff as long as the resident expresses confidence, is competent to do so, and no clearly adverse actions or decisions are occurring. However, it is always preferable for the more informal relationships to have some basis in writing for the staff to feel confident that the resident concurs with the arrangement.
The variables among families related to planning decisions apply to the daily interactions related to care in the facility:
nature of the diagnosis
family characteristics, such as size, proximity, caregiving experience history
family’s culture related to values, education, experience and beliefs
All relationships, even those formalized by birth or marriage, can be damaged by the stress of illness and caregiving. Facility staff and medical providers have a legal responsibility to ensure that abuse of any kind—verbal, emotional, physical or financial—and neglect are prevented and addressed, in order for appropriate care to be provided and for the resident to have every opportunity to thrive. It is very difficult for staff to intervene in family interactions because they are not a part of or familiar with the unfolding family culture. In many cases, the conversational style has existed for many years, may have been initiated by the resident, and all family members are accustomed to, if not comfortable with, the style. Outside of the facility the staff are no longer involved, but the family must continue to exist. Staff should be reluctant to damage a system of interaction and communication unless they are prepared to replace it—a daunting or even impossible task, even for experienced therapists.
However, staff are required to intervene in some way to ensure care. The provider staff and families will often use a facilitator to filter interactions through a neutral translator if emotions have escalated to the point where care is being affected negatively. Completing the more detailed Advance Directive or Living Will, discussing it with the physician, and safeguarding it with an attorney can assist individuals and families to avoid much of the emotional distress and conflict that occurs during a medical crisis for even those families with the most positive styles of interaction. Such a document is the most effective way to communicate the expectations the individual has of the medical provider, the values she has developed related to survival, and how she defines quality of life. Even the closest family with the most intimate ease of communication is often surprised by decisions made by the elderly member. The first-in-line decision maker, following the resident in the bed, may confess that without that input, it is not the decision she would have made.
In a long-term care setting, we usually consider decisions related to medical care. There is consistency in the process and the resident gets every opportunity to make the decisions. The resident may have physical challenges to overcome or learn to tolerate, but unless otherwise demonstrated, staff in a facility assume the resident will direct her own care.
Most residents admit to long term care from a hospital setting, following an acute event, or at the end of a progressive illness. Any scenario presumes the need for a higher level of care than total independence at home. Documents from medical settings and providers describe the resident’s medical status and usually include some indication of mental capacity for decision-making. In some situations, the resident, then a patient in a hospital bed, was not responsive and family members were allowed and even required to make decisions. This status will usually be reviewed at each change in the level of care.
If the resident is incompetent, unable to communicate, unresponsive, or refuses to direct her own care, one family member will be asked to do so. This may already be clear at admission since someone, usually a family member, arranged for the admission, toured the facility, and so on. In some instances, tasks are divided among family members and the person arranging the care will not continue to make decisions after admission. This is especially true in the event of a family member visiting from another community.
Long-distance caregiving is a special challenge within any family and difficult for the facility to address. An adult child living in a different community may want very much to help and to be involve. She may feel very guilty about her perception of not sharing the burden of care with her parent or another sibling. These feelings may result in very energetic decision-making which may not be compatible with the culture of caregiving and decision-making that has evolved locally. The local caregiver may feel resentful which can lead to conflict and exhaustion. Besides staying in regular contact, long-distance caregivers should accept discrete, ongoing tasks which can be performed from afar, complete them as promised, acknowledge the devotion of the local family, and make some sacrifices to visit often and provide some respite.
Some residents and families are reluctant to make any decisions when an acute event has occurred. Their expectation is that medical staff, from the doctor in the hospital to the nurse in the long term care facility, will tell them what to do. There was a time in the history of medical care when this was the predominant pattern, but this is no longer the case. For both legal and ethical reasons, medical providers require full disclosure to patients and families and full involvement from them in the decision-making process. Providers will offer information about available treatment options and even make recommendations but they will require some input from the patient and family as to their preferences and understanding of risks and benefits.
The process of planning for long-term care can be smooth in some cases and difficult in others. Several factors within a family influence the process:
family communication patterns
family resources available (finances, time, and energy)
family history of conflict or troubled relationships
family experience with change
shared family values (or absence thereof)
Other indicators relate to the experience, flexibility and communication skills of the medical providers, facility staff, and community aging network staff involved in consulting with the family and advocating for the older person.
Family patterns of relating to and communicating with one another become more cemented in times of crisis, such as a sudden, acute, life-threatening, or life-altering medical event experienced by a family member. Families with a history of relating to one another smoothly with effective, ongoing communication, tolerance of each other’s life choices and shared values that translate into medical decisions can usually come together to support one another in a crisis. Families with effective communication probably already know the health care decisions and who is making them.
Families with a history of negative or distant relationships, who avoid or have difficult communications and judge each other harshly with little history of support or shared values, are unlikely to face the difficult decisions involved in planning medical care mid-crisis with ease. Local adult children who have been making decisions may suddenly be confronted with a sibling from across the country who demands input into the process of determining end-of-life care or medical treatment.
While it is good advice to begin working on communication at an earlier stage and encourage the older person to document health care choices with medical providers, many people face these issues as the crisis is unfolding. Families in this situation have several options for relief:
The facility in which the older person is currently being treated—hospital, nursing facility, or home-health agency—may have staff with experience in assisting families to focus on necessary immediate decisions without dwelling on the family issues that prevent effective communication. However, staff of smaller facilities may be reluctant to act beyond advocating for the known, documented wishes of the client since they will have an ongoing role in care and interaction with the family.
There may be one second degree relative, friend, clergy person, attorney, or other professional acquaintance who has established a relationship of trust and mutual respect with all family members who wish to be involved with the decision-making. This person may agree to be the spokesperson and if the medical providers agree or if legal arrangements are made, she may be appointed to facilitate discussions and interpret decisions.
Professional case managers are retained to develop basic directions for care by consensus and can speak for the family to care providers.
Staff in hospitals, and other care settings, often have difficulty negotiating the paths of relationships with and among family members. One reason is that they focus, appropriately, on the person in the bed receiving care. Without training in family therapy they may find it difficult to view that person as part of a family system that needs care as well. Even with that view, protocols and legal constructs require that one person make decisions regarding care. If family members have any ability to predict the kind of conflict that will complicate care, they would avoid entering that territory by encouraging advance directives and appointing a neutral spokesperson as early in the process as possible.