DR. NICHOLS is the vice president for medical services of the Cabrini Eldercare Consortium in New York City, which includes two skilled nursing facilities, three home care agencies, two adult day care programs, and a senior housing complex. He invites your questions for possible discussion in this column. Please submit them by e-mail to caring@elsevier.com.
Dear Dr. Jeff:
I have a difficult problem. The patient is a young female with multiple sclerosis who is severely physically disabled but mentally intact. The problem is not the patient but her widowed mother, who is also her responsible party and health care proxy. The mother is abusive and accusatory with the staff and demanding or threatening toward administration.
She calls the nursing staff with “orders” for her daughter's care and has recently insisted that her daughter's care be transferred to the mother's personal physician even though he is unwilling to come to the facility to examine his “patient.” The mother recently called a state hotline with complaints about the facility, which triggered a full-day evaluation before the complaints were found to be groundless. Of course, no other local nursing home will accept this patient.
The social worker says she has heard of facilities that sign contracts with families regarding appropriate behavior, visiting hours, etc. What is your advice?
Dr. Jeff responds: Difficult families can drain time and energy from everyone on the interdisciplinary team. I once worked with an excellent director of nursing who would fantasize about opening a nursing home for childless orphans. Unfortunately, few facilities are without their problem families and fewer still are willing to accept problem families from other nursing homes.
Although family complaints do, at times, have a sound basis, relatives such as the mother described in your letter generally have major psychological issues before their kin ever arrive at your facility. Caretakers generally experience some guilt regarding the institutional placement of a loved one. This is, quite naturally, much greater when a parent is placing a child. Even if medical complexity makes nursing home care absolutely necessary, it is nearly impossible for parents to escape the terrible feeling that they are abandoning a child. One common response is to adopt a hypervigilant stance whereby the parent demonstrates love by protecting a child against the “evil” nursing home.
Facilities inevitably assume many of the roles normally played by parents, even when they try hard to avoid infantilizing residents. In the Latin phrase popularized by colleges, we act in loco parentis: in the place of the parent. It is obvious that this has a significant potential to leave a biological parent feeling displaced, inadequate, and therefore angry. Unsurprisingly, some parents attempt to demonstrate, and certainly to verbalize, that they would do a better job than we do.
Understanding a family's underlying motivations can help a nursing home formulate better responses to unacceptable behaviors and outrageous demands. Although it is possible that the mother described here is simply a person who has been difficult and unpleasant all her life, it is more likely that she is an individual with underlying problems who finds herself in an extraordinarily stressful situation. Understanding behaviors, however, is not the same as tolerating them.
Focus on the Resident
In many cases, and certainly in this one, so much attention is paid to the acting-out family that insufficient attention is paid to the resident, who should be the focus of concern. In your letter, you state that the resident possesses decision-making capacity. She should be the one to decide whom she wishes as her physician. It seems unlikely that it would be someone who won't come to see her. She also needs to decide what roles she wishes her mother to play in her life.
Very occasionally, residents use their families as weapons against the facility, inventing lurid tales of abuse and neglect intended to infuriate the “abandoning” family, which, in such cases, is the innocent pawn. These patients' behavior needs to be addressed directly.
But most young adults, regardless of disability, don't want their parents arriving unannounced for visits at any hour of the day or night. This resident would probably benefit from developing relationships with peers and maintaining relationships she might have had in the community.
She may be very embarrassed by her mother's behavior and frustrated by its inevitable negative effects on her relationships with staff. After all, it isn't easy to know that you need to have your diaper changed by an aide whom your mother has just called “ignorant.” She might prefer that all directions regarding her care come exclusively from her. She might wish for some involvement of other family members. She might even wish to have private time for her own activities. In the power struggle between a dominating parent and a nursing home, we should not forget that the person controlling the patient's life should be, as much as possible, the patient.
Ideally, the patient will become your ally in your approach to her mother. For example, although federal regulations require that nursing homes make access to residents available to their families at almost any time, one major exception to this is when the resident does not wish to be visited.
Assuming that the patient wishes to utilize the mother's physician, the facility should certainly place the same expectations on him or her as on any other attending physician, including fulfillment of mandatory visits, arrangements for interim visits in cases of change in status, appropriate telephone/fax availability for communication, and all quality standards you would require of any other attending physician. There can be no justification to accept on your staff a physician unable or unwilling to provide quality care.
Contracts or agreements with families are standard in long-term care. Most facilities use some form of signed admission agreement that specifies patient rights and facility charges. Social workers and psychologists often negotiate written or verbal agreements with their clients about treatment. I would suggest that you use this model rather than try for a formal legal agreement, which would undoubtedly be very expensive and have potential survey implications if it does not satisfy state and federal regulations.
Prior to such an agreement, the facility has to decide what conditions it is willing to accept. It is not reasonable to insist that the mother receive no information about her daughter's status or be forbidden to call anyone on your staff or never visit. Instead, it would be preferable to decide in advance on one staff member, perhaps with an alternate if that individual is sick or on vacation, who can be called and to establish an acceptable schedule for calls.
Focus on the Future
Care agreements or contracts like this often include language about appropriate behavior. Often, staff members who have been subjected to abuse reply to the offender in a similar fashion. Without trying to review who did what in the past, both parties should agree that all communications in the future must be polite and respectful. The facility should be firm that verbal abuse of staff members is unacceptable.
Designation of appropriate communication channels should help. Hearing multiple versions of information from different staff members generally increases family anxiety, while manipulative families split staff by using one person's report against another. The facility should specify certain circumstances under which the mother will routinely be notified of a change in status.
Remember, a contract between two parties needs to specify actions by each party. Since this agreement places obligations on the facility as a whole (moral, at least, if not legal), the administrator needs to agree to anything the facility promises.
It may be useful to identify certain tasks the mother could carry out that might allow her to share in care responsibilities. For example, the mother might agree to prepare weekly a favorite dessert for her daughter or a regular schedule of reading to the patient if she is unable to turn pages for herself, or, perhaps, take responsibility for personal laundry. This would allow her to continue to parent her child.
Typically, agreements such as this are worked out in person between the family and key members of the care team. Families generally agree to a team meeting because they too are already aware of obvious difficulties. When possible, the resident is also present.
The contract should not be presented at the meeting, but rather talked out and mutually shaped. The parent needs to be able to present and prioritize her or his needs. The meeting should be polite and focused. Even though you may regard this mother as a burden, it is important to treat her as a loving parent who shares concern for her daughter's best interest.
It is extremely important to recognize the mother's legitimate and understandable anxiety about her daughter rather than dwelling on her prior bad actions, even if these affirmations must be given through clenched teeth. Similarly, the team needs to repeatedly insist on its commitment to the resident's best interest and quality care.
Defensiveness just stimulates anger. The agreement needs to herald a new beginning, and the discussion should be future oriented. There is a certain solemnity about signed agreements that gives them extra weight, even if they have no more legal standing than New Year's resolutions.
The real tragedy here is that a young woman has been struck down by a terrible neurodegenerative disease, robbing her of independence. As professionals, your aim should be to convert the mother from an item on the problem list to an ally in her daughter's care. This might seem like a miracle, but we perform miracles in long-term care very day.
FULL TEXT