The nursing home search is like peeling an onion -- it's tearful, it stings, and questions come in layers. Even with all the guides designed to help families, there is often a nagging feeling after leaving a parent or relative at a new home that translates into sleepless nights. Iris C. Freeman, associate director of the Center for Elder Justice & Policy at the William Mitchell College in Minnesota, has said: “The notion of comparative shopping with nursing homes, as one does with consumer goods, is to some extent an illusion.”
Finding a facility in which one is confident that a family member is being properly cared for is a gift. Our Nursing Home Parents: The Right Home? Part 1 focused on ratings, activities, and atmosphere. But in the nursing home search there are also questions about illness, the role of physicians, medication, cultural sensitivity, and what you do if change is needed.
In terms of physician availability, we should all be clamoring for models that include full time coverage. The ideal is having a medical director on site. However, the role of physician assistants was documented in Physician Assistants Providing Geriatric Care by the U.S. Dept. of Health & Human Services.
Nonetheless in 2009 a compelling argument was made for a “nursing home medicine specialty, which recognizes the nursing home as a unique practice site,” according to Paul R. Katz, M.D., University of Rochester. He and his colleagues noted that it “would go a long way toward remedying existing problems with care in skilled nursing facilities and would best serve the needs of the 1.6 million nursing home residents in the United States.” Nursing Home Physician Specialists - Annals of Internal Medicine
Families quickly come to understand the benefits of nursing home physicians who take the time to get to know residents and talk with caregivers. In addition to developing a relationship with physicians, nurse practitioners, physician assistants, and nurses, it is important to review medical records often. You want to know what is happening on a daily or weekly basis.
The nursing home curse, UTIs
With the frail and elderly there are a multitude of issues that create discomfort, but one of the most daunting is the urinary tract infection (UTI). It is also one of the most commonly diagnosed illness in nursing home patients. But it is often diagnosed late and can be poorly treated.
According to the Alzheimer’s Association, “If a person with a memory impairment or dementia has a urinary tract infection, this can cause severe confusion known as 'delirium'. Delirium is described as a change in someone's mental state or consciousness and usually develops over one or two days. There are different types of delirium and symptoms may include agitation or restlessness, increased difficulty with concentrating, hallucinations or delusions, or becoming unusually sleepy or withdrawn.” Urinary tract infection (UTI) and dementia - Alzheimer's Society and Avoiding the Urinary Tract Infection | Alzheimer's Reading Room
Question to ask:
Answers to expect:
Question to ask about UTIs:
Answers to expect:
Prophylactic treatment -- This is an answer you do not necessarily want to hear because residents can develop drug resistance leaving few alternatives for illnesses such a pneumonia. Nonetheless, it is advocated in many homes.
What happens when nursing home residents develop UTIs that result in delusions and agitation? A nursing home that chooses not to deal with a troublesome patient may send them to a hospital, which can add to the patient's confusion. A patient suffering from a UTI can be considered a threat due to aggressive behavior or agitation. When there is no definitive diagnosis on a UTI psychotropic drugs are often prescribed, treating the symptom rather than the problem.
The UTI and psychotropic drug quandary
Oftentimes psychotropic drugs become the drug of choice. While there may be instances where this is necessary, it is more important to test and treat if it is a UTI.
Both in Senate testimony and in interviews, Jonathan M. Evans, M.D., has expressed his opposition to this practice prescribing psychotropic drugs. President of the American Medical Directors Association, who teaches Aging and the Law and the University of Virginia School of Law, he pointed out the pressure of trying to make dementia patients behave. The "Hire a Doc" Nursing Home Shame | Psychology Today
With regard to drug use he said, “Most of the time, this equates to chemically restraining the patient. Pressure most often comes from frustrated caregivers but also from family members who have been led by other healthcare professionals to believe that these drugs are essential.” U.S. Senate Special Committee on Aging
UTI questions to ask with regard to the nursing home:
Answers you should expect:
Patient rights and UTIs
As one hospital resident pointed out when asked how UTIs can be prevented, “Changing when wet and making certain that patients are showered and washed regularly.”
This is where patient rights can clash with "in the best interest of a patient." A staff member might say, “If he or she doesn’t want to change or shower there is nothing we can do.” Trained staff can handle this situation.
Patient rights and the Ombudsman
If you are concerned about patient rights or other issues, talk to the facility ombudsman. Just keep in mind that the situation is not always ideal.
Despite the value of the program, patients and families are often fearful of speaking honestly with an ombudsman because they are concerned about retaliation. Then there is an issue of “who is in bed with whom.”
Donna McCormick, managing attorney for the Elder, Health & Disability Unit at Greater Boston Legal Services, pointed out: “In theory all nursing homes should have ombudsmen, but the challenge takes place when they become so intertwined with management that they don’t always advocate effectively for residents.” Long-Term Care Ombudsman Program
Minority health: ethnic and cultural sensitivity
Cultural sensitivity is a complicated issue. In many ways the nursing home is a microcosm of the community and, as such, residents will reflect the area population. When that is the case, if staff is familiar with the community families can feel comfortable with caretakers. However, there is a wide range of issues that can influence residents’ comfort levels.
On the medical care side, the Office of Minority Health is promoting Culturally Competent Nursing Care: A Cornerstone of Caring because, as their website notes, “Cultural and language differences may engender misunderstanding, a lack of compliance, or other factors that negatively influence clinical situations and impact patient health outcomes.”
This issue will be even more vital if we experience the population shift as determined by research at the Center for Gerontology and Health Care Research, Brown University.
Zhanlian Feng, Ph.D.Dr. Feng explained: “As reported in our Health Affairs paper, we observed a rise of minority residents in nursing homes in recent years which is quite a departure from traditional views and beliefs about minority cultures; that is, emphasis on family care rather than institutionalization. (Growth Of Racial And Ethnic Minorities In US Nursing Homes Driven.)
He added: “However, demographic shifts and social changes have been at work to gradually erode the traditional way of elder care in families of racial/ethnic minority groups in very much the same way they have transformed the ‘mainstay’ families inAmericaover the past decades.
“I'm not saying minority families are abandoning their traditional elder care arrangements; it's just that many families are increasingly constrained by their ability to care for loved ones at home. Traditionally it has been the case that blacks used nursing homes less than whites, but nowadays the trend has reversed: black usage rate is higher than white usage now.
"However, minority nursing home residents tend to be segregated from white residents and facilities with a higher proportion of minority residents also have more quality of care problems,” he said.
Dr. Feng pointed to 2008 research in the Journal of Health Policy and Law that underscores this point: Racial disparities in access to long-term care: the illusive pursuit.
Caring for family at home: African-American, Asian and Latino
Mei-Chen Lin, Ph.D., associate professor at Kent State University, is working on new research projects focusing on difficult conversations between aging parents and adult children. With regard to nursing home care Dr. Lin points out that in many cultures including Asian, Latino, and Africa-American families prefer to be primary caretakers.
In her research she has found that the African-American population “has a huge mistrust of the medical establishment and historically speaking they do not have the same kind of access to health care.”
She added, “With many Asians and Latinos, it is not so much about not being able to trust the government or the health care system, but a lack of understanding of the health care system. They like to use alternative medications – especially herbs -- and these are not really available in a nursing home.”
Dr. Lin also pointed out the difficulty in communication. She said, “Staff and physicians do not necessarily give residents enough time to explain what they are going through. And one answer is to advocate for more training and education especially in places where minorities make up the population and are the nursing home’s primary consumers.”
She added, “And I know people who are knowledgeable are supposed to take care of residents, but elder abuse is happening at nursing homes. When residents ask, ‘Why did they do such a thing?’ oftentimes the answer is short staff, the inability to deal with care-giving stress, lack of effective ways to handle residents – especially unresponsive seniors -- on a daily basis.”
Dr. Lin acknowledges what many of us have seen, for too many older adults needs are not being met.
The last chapter
Nursing homes are often associated with one’s final move, the last chapter in a person’s life. Once there, you stay. But families who are actively involved with the nursing home where someone they love resides are evaluating care and even changing nursing homes when they identify deficiencies or are dissatisfied with placements made during hasty hospital discharge planning.
Patricia L. McGinnis, executive director of California Advocates for Nursing Home Reform, said: “Contradictory to their role — appropriate placement — discharge planners are often pressured to get patients out of the hospital because of billing issues.” A fact sheet, “Challenging Hospital Discharge Decisions” is at www.canhr.org.
Additionally, when there is a change of nursing home directors the culture can change, for better or worse. If change is not for the better, change homes.
For those concerned about "transfer trauma” Robert L. Kane, M.D., author of The Good Caregiver offers this advice: “Caregivers should recognize the importance of arranging for the information transfer of medical history, medication and behavioral records. The caregiver is the only person who really knows what is going on, and the more you can compile the better the chances for success at a new home.” Dr. Kane chairs the Long-term Care and Aging Department of the University of Minnesota.
Remember what it was like when your first grader or a friend's child was assigned to a teacher whom you wished they could have avoided? You essentially prayed until the semester ended and hoped that it would be better next year. When it comes to elderly parents, there may not be a next year. If you or they are unhappy at a particular nursing home – make a change. With love and support in new surroundings, they can thrive.
Written through the 2013 MetLife Foundation Journalist in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.
Copyright 2013 Rita Watson, MPH / All Rights Reserved