ADVOCACY: A RUDE AWAKENING

OPINION:

I am a resident in a nursing home. I am also the “responsibility party.” That designation means that I, and I alone, control my destiny while adhering to the policies and practices imposed by the nursing home. Policies and practices under which all residents and nursing homes must adhere. The policies and practices are outlined by the Centers for Medicare/Medicaid Services Manual—the U.S. Government. These guidelines are designed to protect the resident from abuse and assure that they receive the medical and palliative care they deserve. In the case of most residents, a family member, attorney, or a trusted friend is the responsible party. This is because most residents in nursing homes are perceived to have suffered a cognitive decline and are no longer able to carry out financial transactions or make sound decisions that affect their well-being. It is the “responsible party” that makes those decisions while conforming to the safety, comfort, and security of the resident.

As such, the relationship between the resident and the “responsible party” must be one of trust, understanding, and advocacy. The responsible party must have an intimate knowledge of the history, habits, and wishes of the resident. That is why the “responsible party” is usually a caring, involved, knowledgeable, family member. Unfortunately, this is not always the case.

I attended a “Family Council Meeting” as a resident/responsible party. Since my nursing home has 160 beds, my expectation was that the community room would be filled close to the capacity. Surprise, surprise! Initially, it was me and four other individuals. We were later joined by four others. Two of the other eight were individuals associated with the same family member. In total, only seven residents were represented. Seven residents represented out of a potential of 144 if the facility is filled to 90% capacity. Just under 5% of resident’s family members showing interest.

This is a grim statistic if it realistically reflects family interest and involvement. Significant regarding the level of accountability demanded of nursing homes. I see many family members frequently visiting residents, celebrating birthdays and holidays—some even come daily—showing genuine concern for their loved one. I also see family members discussing issues with nursing assistants, nurses, and social workers. These one-on-one conversations have little effect on the overall governance of the long-term facility or the care received by the resident. There are just too many different individuals involved with the care 24/7 to talk to one CNA or a charge nurse. At every shift change, someone new will take over, communication between shifts is weak, and accountability will be entirely different.

If this is indicative of the apathy in terms of concern for a family member in long-term care facilities, seniors are in big trouble. Older adults are left in the hands of a culture dominated by management more interested in meeting administrative and financial needs than the needs of the residents. Older Americans face a future with little support and even less advocacy.

Advocacy groups, although well intentioned, face an uphill battle with such apathy. As it turns out, advocacy groups may be the only hope for the aging population as family members couldn’t care less. Family members are glad to shed the responsibility of an aging family member and place them in long-term care thinking that they are getting the best care possible. The long-term care facility will make all the assurances in the world and paint an optimistic picture, but this is a well-crafted illusion. Some admissions personnel are not aware of what goes on in their facility. Department heads will shield the administrator from reality while ensuring their job security. Administrators are in denial—after all, their primary responsibility is fiscal in nature—filling the coffers of the corporation.

If families turn over the care of the loved one to unknown entities, why not give the advocacy responsibility as well? The evidence in my sample shows this is what’s happening. Unfortunately, advocates are underutilized and overworked.

The enemy faced by the elderly is silence. They are in a place where they have no voice. The professional advocate may be the only resource available; a well-intentioned,  underinformed, and overworked substitute family member. The information about the advocate, the name, contact phone numbers, and mailing address are all given to the responsible party during the admissions process or posted on an obscure bulletin board, soon to be forgotten.

The involvement of family members, as shown in my experience, has been superficial, assumptive, and depressing. Family members were given the opportunity to discuss their concerns and quality of care with the Director of Nursing or her assistant openly, yet less than 5% of the residents were represented. Is there a communication breakdown? Will no one listen? Nursing homes are reluctant to place undue emphasis on advocacy involvement for fear of operational meddling.

An advocate, no matter how good or how dedicated, cannot not know the life history, the habits, what gives the resident pleasure, the feelings, of every resident. At best, it is merely a temporary bonding. Lacking is the established and reinforced trust, confidence and intimate knowledge of the resident’s past, present, and future aspirations. The professional advocate can offer only sympathy, but no empathy.

A feeling of fear, emptiness, isolation, anger, and abandonment fill the soul of the resident.

Absent is any mechanism that offers meaningful, lasting, social support.

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