NursingPatience

THE BALTIMORE SUN

Her family knew Sophie Bernstein could be demanding, but they were stunned when told she was about to be evicted from her nursing home.

Too difficult, a nursing home official told them, after she'd been living there three weeks. She wouldn't sleep in her bed. She refused to cooperate with staff. Sometimes, she'd wander into other people's rooms.

Dena and Hillel Soclof, her daughter and son-in-law, were at their wit's end -- until they found the one employee at Levindale Hebrew Geriatric Center and Hospital in Northwest Baltimore who could come to their aid.

They asked for help from Heather Allen, the nursing home's patient advocate. She, in turn, persuaded top administrators to assign one more nurse to the dementia ward at night to look after Sophie. They also brought in a bed that was lower to the floor -- she'd been scared of falling out.

The problems were solved. The Soclofs were delighted. Within a matter of weeks, Sophie no longer needed the extra attention.

"She's still difficult," Dena Soclof says of her 90-year-old mother. "But she's like everyone else."

Ask anyone who has ever had to put an elderly relative in a nursing home: Families of patients and nursing home staff are going to have their conflicts.

Sometimes, the disagreements are over matters of basic care: Is the patient getting the kinds of food he or she likes? The appropriate forms of therapy? Is she being dressed in the clothes she likes to wear? Are his teeth brushed after meals?

Or it might be something less obvious: Are there opportunities to socialize? Will someone help him read -- or find his favorite show on TV? Does the staff understand her preferences, her memories, her background, or even bother to engage her in conversation?

When something is not going right, a patient's relatives can complain to the first person they see, but that may not get them far. There are no guarantees their complaint will get passed along to the proper person -- or even the next shift.

"Despite people's best efforts, things slip through the cracks," says Ronald Rothstein, president of Levindale. "Health-care systems are notoriously complex. There are a lot of points where things can break down."

Rothstein's solution was to create Allen's job as manager of guest relations and patient advocate two years ago. She serves as a kind of "fixer" for families, sometimes just pointing out who is in charge of what, or passing along a concern to the right person.

"The overwhelming majority just want someone to talk to -- someone who will give them a response," says Allen. "It isn't just complaints. It's often [about] needing someone to assist them."

Relatively few nursing homes have a patient advocate like Allen, but that doesn't mean families don't have other remedies at their disposal.

One of the best ways to avoid or resolve conflicts with nursing homes, industry observers say, is for families to learn in advance as much as they can about how the nursing home operates.

"You have to pay attention to orientation and make an effort to meet people," says Allen, who formerly worked as admissions director at another nursing home. "Families have to learn what's a realistic expectation from a facility."

A typical nursing home is a conglomeration of specialists: physicians who supervise a patient's medical needs, nurses and nursing assistants who attend to patient care, social workers who counsel families, and dieticians who plan the meals.

The most common concerns voiced by family members tend to center on nursing care and particularly the work of the nursing assistants who must do everything from change linens to feed and clean up after patients.

"The nursing assistant is the little hinge that swings the big door," said Bob Harris, administrator of Franklin Woods Center, a nursing home in Rosedale. "That's where most of the care comes from."

Unfortunately, the job is not well paid, and turnover rates in nursing homes tend to be high. Yet the smart families get to know their relative's nursing assistants -- and learn to recognize and praise the assistants who perform their duties well.

"There's a severe labor shortage in the nursing home industry, worse than in hospitals in general," says Bruce Rosenthal, a spokesman for the American Association of Homes and Services for the Aging, a coalition of 5,600 nonprofit facilities nationwide. "The nurse who works for your mom or dad today may find a better job in six months. That's the reality."

Families who have a concern over care and voice it to the first person they see in a white uniform shouldn't expect to get results. It's better, experts say, to talk to the ward's supervising or charge nurse, a person whom they should get to know right away.

"You have to be willing to do constant follow-up," says Gail MacInnes, family liaison for the National Citizens' Coalition for Nursing Home Reform, a Washington-based nonprofit advocacy group. "When you do voice concerns, you have to be ready with specific examples."

MacInnes recommends families get involved in a nursing home's "family council." Each home is supposed to provide accommodations for families to form one. A council consists of family members who meet regularly to discuss issues. Their recommendations to management generally carry more clout than any one family's appeals.

"Providers are starting to recognize more and more that families are there, and you have to build up relationships up front with them," says MacInnes.

Another way families can get involved is to attend "care plan conferences." They involve nursing home staff from various departments who meet quarterly to discuss each individual's care plan. Families are supposed to be notified about them in advance so they can be included.

Still, even in facilities that follow the letter of the law, problems will arise -- and not all of them are entirely the fault of nursing homes. Often, families are ill-prepared to deal with sending a relative into nursing home care, both emotionally and intellectually.

A sudden illness may suddenly thrust families into dealing with the issue. Thanks to the rise of alternative care, in-home nursing and assisted living, nursing homes are generally populated by people with profound needs.

Nurses at Levindale say their newcomer families are more apt to be yelling at each other than the staff. Often, there are miscommunications within a family -- nursing homes are obligated to share medical information with only one person, for instance, and when that information isn't passed along to the rest of the family, tempers can flare.

"[The families] come here frustrated," says Countess Robinson, a longtime nursing assistant at Levindale. "At some point, they get angry."

Nursing home officials say among the mistakes families make is that they fail to visit their loved one regularly, or to learn why a facility does things a certain way. Medicare laws and other government mandates dictate many staffing decisions, officials note. Meanwhile, family members who haven't witnessed a relative's deterioration may have unrealistic expectations when they finally come to visit.

"You ought to be here at least twice a week or at least be calling," says Shelley Perry, a licensed practical nurse at Levindale who works with dementia patients. "Even the touch of your hand can make a difference in their day. I don't think anyone ever loses it all."

One of the biggest mistakes families can make is to be silent when problems arise -- often because they are fearful that criticism of staff will result in greater harm being done to their relative, intentionally or not.

When nursing homes don't respond to a problem, families can always bring their concerns to the attention of authorities. That may mean calling or writing the state's long-term-care ombudsman's office, an agency usually contained within a state's office on aging. Officials there are supposed to look out for nursing home patients' rights and investigate complaints.

"Nursing homes are required to post information on how to register a complaint," notes Patricia Bayliss, Maryland's ombudsman.

Of course, when nursing homes do respond positively to complaints, relationships with the family often improve considerably. Officials at Levindale note that Allen has probably saved the facility money (and spared administrators a lot of headaches) by solving problems before they end up in Bayliss' office.

The Soclofs are very pleased with Levindale's performance in recent months. Since the decision was made to keep Sophie in the dementia ward last May, they've gotten to know the staff better -- and happily discovered that some of the nurses wanted to keep her all along.

"The staff actually thanked us for getting the extra person to help out and for the low beds" that were added to the ward, said Hillel Soclof, a retired hospital administrator.

The couple, who have become active in Levindale's family council, say their experience taught them at least two things: to have reasonable expectations for Sophie and for the nursing home staff, but also to be persistent.

"I don't think there's a nursing home out there that's going to provide you with one-on-one care," Hillel Soclof said. "We first had to understand Levindale's problems, and that was a big deal for us. But once we got things settled, it's been a whole different ballgame."

How to help

How should you advocate for a loved one in a nursing home? Here are some strategies to consider:

* Be familiar with staff -- their names, roles and responsibilities. Learn how grievances are addressed.

* Educate the staff about your own loved one's preferences, daily routine, activities, work and background.

* Pay attention to the care provided. Note deficiencies and monitor staff to see if they are kind, patient and respectful.

* Report concerns and problems to the appropriate nursing home staff as soon as they arise.

* Document your concerns and actions taken to report them, including the names of those involved, the date, time and details of the event.

* Request a meeting with appropriate staff to address concerns. The meeting should result in a concrete plan of action.

* Be assertive, persistent and confident, but respectful in your interactions with staff. By being respectful, you avoid creating ill will.

* Get involved with the nursing home's family council, the organization of family members who advocate for patients. Many are woefully ill-attended.

* Seek outside help if your concerns are not remedied by staff. Report problems to the Long-term Care Ombudsman Program or the state licensing agency so they can investigate.

Source: The National Citizens' Coalition for Nursing Home Reform

Resources

* The National Citizens' Coalition for Nursing Home Reform (http: / / www.nursinghomeaction.org).

For more information, including details of the NCCNHR's project to promote family council involvement in Maryland, contact them through the Web site or by calling 888-394-7844.

* The Long-Term Care Ombudsman program (http: / / www.aoa.gov / ltcombudsman / default.htm) includes links to each state ombudsman's office.

* The Maryland Nursing Home Report Card is (http: / / www.mhcc.state.md.us) a quick and easy way to see how any Maryland nursing home has been graded by state inspectors.

* Maryland nursing home regulations (https: / / constmail.gov.state.md.us / comar / dsd_web / default.htm)]

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