All too commonly, the choice of a nursing home is made under duress—when a prospective resident and his or her family are already in difficult times. U.S. News asked Eric Carlson, a Los Angeles attorney with the National Senior Citizens Law Center, a nonprofit law firm that defends the interests of seniors, what to look for in a care provider and how to fight back if there's a problem. Carlson is the author of 20 Common Nursing Home Problems—and How to Resolve Them and coauthor of The Baby Boomer's Guide to Nursing Home Care (Taylor Trade, $14.95) Edited excerpts from the interview:
What can consumers do to best protect themselves up front?
Be aggressive about questioning a prospective home about staffing and staff training. A nursing home generally receives $4,000 to $9,000 a month for the care of one resident, so it should be responsive to both residents and potential customers. Talk to residents and visitors without nursing home staff hovering nearby. Visit several times, at different hours and on different days. Make at least one visit at mealtime. Examine inspection reports. Each nursing home that accepts Medicare or Medicaid payment is inspected approximately once a year. And the National Citizens' Coalition for Nursing Home Reform offers a consumer guide to getting good care in a nursing home.
Are there special innovations to look for in Alzheimer's and dementia care?
Yes. Some nursing homes are trying a different approach, commonly called resident-centered care, that offers a homelike environment and that works to meet a resident's preferences, such as eating frequent snacks, waking up later, or being able to take walks. These homes work harder to try to get people up and find activities that work for them as individuals so they are not sitting around in wheelchairs watching The Price Is Right every morning. They stress intellectual and physical stimulation, exercise, calming music, and pets for therapy. And they pay attention to how the staff approaches and talks to dementia patients. Some examples: moving slowly when approaching a patient, approaching from the front so they do not get startled, and calling the person by name since even late in the disease they remember their own names.
What is the biggest factor when it comes to quality of care?
Staffing. Annual turnover for nurse aides runs at 100 percent or higher. Nurse turnover rates are also high at 50 percent annually. Existing staff winds up working double shifts. Seek out homes with low staff turnover and a high ratio of staff members to patients, particularly those for the nurse aides, who do the lion's share of the hands-on work. One staff member assigned to five or six residents is best. An administrator or director of nursing may not be willing to cite staff turnover rates but should be able to answer simple questions about how long employees have worked there.
Try to find a place where the nurse aides have been around for two or three years. The nurse aides are the ones waking people up and helping them get dressed and fed, and if they are staying, that probably means that the home is treating employees a bit better and the staff wants to be there. They, in turn, are apt to have a better attitude toward providing care.
Preferably, nurse aides will be assigned so that each resident generally receives care from the same aide, who is accountable for his or her care. In the worst homes, you'll see a resident cared for by one person on Monday, someone else on Tuesday, and someone else on Wednesday. Consistent staffing can make a huge difference in a resident's quality of life and behavior. Dementia and Alzheimer's patients often require consistency to enable the resident to recognize the person and build trust.
What are some other common problems?
Inappropriate use of behavior-modifying medication is a big one. It's easy to use sedatives and "psychoactive" medications, despite their side effects, to make residents more manageable. That said, it can only be administered with consent of the resident or his representative. If the medication is used solely for the nursing home's benefit—to keep the resident quiet and out of the way—you should likely refuse it. If the doctor recommends it, you must be told what the benefit is and then choose to accept or reject the recommendation. The family has to be real clear that the doctor does not have any unilateral authority.
The use of physical restraints can be problematic, but it has dropped dramatically, and many nursing homes now function completely restraint-free. Ask about the policy regarding the use of restraints (physical or medication-related), and be observant on visits for residents in chairs with lap trays and waist restraints or someone that looks sedated. Alternatives always exist.
Can a nursing home evict a resident for being difficult?
Nursing homes often attempt to evict residents with dementia who exhibit difficult behaviors and require more staff time. In almost all such situations, the nursing home is the right place for an individual with aggressive dementia, and nursing homes are obligated by the federal Nursing Home Reform Law to provide comprehensive dementia care. In general, a nursing home can evict a resident if the resident needs a level of care that cannot be provided in a nursing home, or if the resident's presence endangers the health or safety of others in the nursing home. If there's a problem with someone merely being difficult, the nursing home should identify an aide who works well with the resident and permanently assign the aide to work with him.
Generally, a nursing home must give 30 days' written notice before a planned eviction that lists the reason for the eviction along with the facts. The notice must list the telephone number for the state agency that inspects and licenses nursing homes along with instructions on how the resident can request an appeal from the agency. An administrative law judge will hear both sides and rule. My experience is that residents win the vast majority of appeals.
How big an issue is a removal to a psychiatric unit to get the resident out?
If somebody has a heart attack, it's a clear medical decision to move him to a hospital. In nonemergency situations, transfer requires the informed consent of the resident or the resident's authorized representative. But it's not unusual for hard-to-manage nursing home residents with Alzheimer's and other dementia to be committed from nursing home facilities to psychiatric units against their will. This also can happen in assisted-care facilities.
When the nursing home decides to send the person out for a pysch evaluation, state law governs the process. Generally, there's a short hold period of, say, 72 hours, which varies state to state. The individual is placed in the care of the county or state where he or she resides. That is followed by some kind of adjudication, which allows the person to be held against his or her will for a longer period or be returned to the care of his family.
Some cynical nursing home administrators try to evade the eviction requirements by transferring the resident to a hospital or psychiatric unit, then refusing to take him or her back. When this happens, the resident and family have to be very persistent in demanding readmission. Most states allow a resident to hold a nursing home bed for a certain period of time, and federal law says that a Medicaid-eligible resident has the right to be readmitted to a nursing home's next available bed, no matter how long the hospital stay. If the nursing home refuses to comply with these laws, it's necessary to file an urgent complaint with the state inspection agency and/or consult with an attorney.
You have to be really persistent because a cynical management figures it can just outlast consumers. Inspection agencies need to step up and assess meaningful fines so the calculus will change for nursing homes when they think about doing this in the future.
I'm frequently asked whether a resident should even want to go back to a nursing home that doesn't seem to want her. My answer is a strong yes. When a resident wins one of these disputes and returns to the nursing home, she gets treated with more respect. Management and direct-care staff get the message that they need to work with the resident and the resident's family to plan and provide appropriate care. Also, nothing's worse than searching for a nursing home while a hospital is rushing to discharge you from a short-stay psychiatric evaluation. Too frequently, residents in that situation end up being sent to one of the area's worse nursing homes.
If there's a problem with a nursing home, what are your rights?
Many nursing homes follow procedures that are in conflict with the federal Nursing Home Reform Law, which has been in effect since 1990. The nursing homes' admission agreements often have provisions that contradict what the law says. For example, an admission agreement might limit the rights of a Medicaid-eligible resident to be readmitted after a hospital stay. By law, residents are entitled to the nursing home's next available bed. We have a consumer guide that gives step-by-step instructions on how to handle 20 common nursing home problems. Each state has an ombudsman program that provides advocacy for nursing home residents free of charge. Contact information for a particular state's program can be found at the National Long Term Care Ombudsman Resource Center.
I know at the time it is a difficult period and people feel unsupported, and it's baffling to them that this possibly could be happening, but nursing homes need more consumer pressure. A lot depends on consumers knowing more about nursing homes and not being intimidated talking to these people.
How do laws governing assisted-living communities differ from nursing homes?
Older persons and their family members need to be particularly careful in selecting an assisted-living facility and, after admission, in demanding adequate, personalized care. Assisted living is regulated state by state—there is essentially no federal law on assisted living. Commonly, "assisted-living facility" is defined in state law as a type of facility that provides room, board, and some sort of health-related services. Which is true, but not specific enough. Under such definitions, an assisted-living facility may have around-the-clock nurse staffing with the capacity to handle a resident with significant health care needs. Or it may be a glorified board and care home, with few services beyond meals and housekeeping. Some states' regulations set virtually no standards for the training provided to direct-care workers, and in still other states, the regulations set trivial standards such as 10 hours of initial training. Information on each state's direct-care training requirements can be found in NSCLC's Critical Issues in Assisted Living: Who's In, Who's Out, and Who's Providing the Care, available at NSCLC.org.
State regulations often are vague as to what type of needs an assisted-living facility is required to accommodate. Regulations commonly say that a resident can be evicted when a facility can no longer meet her needs but with little specificity of what, if anything, the facility is required to do to try to meet those needs. The Assisted Living Consumer Alliance provides information to consumers and policymakers and is developing recommendations to guide the development of assisted-living law on both the state and federal levels. The ALCA website includes explanations of each state's assisted-living law.