University of Pittsburgh psychiatry professor Richard Schulz has been one of the nation’s foremost researchers on caregiving stress for
Diane Menio, 61, is one of Pennsylvania’s leading advocates for issues affecting the elderly, which includes trying to ensure quality care is delivered in nursing homes.
She has been executive director since 1995 of the Center for Advocacy for the Rights and Interests of the Elderly (www.carie.org), which is based in Philadelphia. It has a government contract to provide ombudsman services for individuals and families who encounter problems dealing with long-term care facilities in that city. Ms. Menio also served as president from 2000-2002 of the National Citizens Coalition for Nursing Home Reform, a volunteer advocacy group now known as the National Consumer Voice for Quality Long-Term Care.
In addition to having visited many nursing homes herself as a former ombudsman and overseeing a staff that provides those services now, Ms. Menio handled her own mother’s nursing home placement nearly a decade ago. We sought her advice on how to make the best choice when someone needs to enter one of Pennsylvania’s approximately 700 nursing homes, as well as what a family member can do to help ensure loved ones receive the best possible care as a patient.
Aging Edge: First off, when’s the right time for people to begin reviewing nursing home choices, so they don’t end up making a hurried decision during a crisis?
Menio: If you know someone who has a chronic disease — such as dementia — that isn’t going to get any better, it might be time to look at what the options are. You have time then to look at assisted living or nursing homes or options for getting help at home, which is something else that people put off. Sometimes someone ends up in a hospital, and that’s what triggers the placement, but that’s not the best time, as people may not understand all their choices. I don’t think everybody who turns 60 or 70 is going to go out and look at nursing homes, but it’s different if there’s a chronic illness and some reason to think you might need it.
Aging Edge: If a nursing home placement is needed for a patient leaving the hospital, how useful are the hospital’s social workers in arranging that?
Menio: I think social workers are great, and they do help with these kinds of things, but they’re also under a lot of pressure in the hospital. They have a certain amount of time when people can stay there [with payment authorized by private or government insurance] and then they’re under pressure from management to get people out of the hospital. People, consumers, also have rights in terms of appropriate discharge, and the hospital needs to provide a safe discharge that will work for that purpose. Often people get a notice that mom needs to be discharged tomorrow, but it can really be a couple of days.
Aging Edge: And the social worker will typically provide a list of possible nursing homes, right? With the nursing homes sometimes having marketing representatives right there to try to recruit new admissions?
Menio: Yes, and the problem is that means it’s not an even playing field. Many times the list you get may not be the homes you want to look at and may not include the nursing home a block from someone’s house, or that home may not have a marketing person in the hospital. There’s a data base the hospitals use of nursing homes that let them know if they have available beds, and when my mother was in rehabilitation and had to go into a nursing home, they gave me a list but there was not one place I would have wanted her to go to, and I had to go find one on my own. I did, but not many people would know how to go about that.
Aging Edge: So what should a consumer do on their own to find a place?
Menio: First off, go online and look at the federal government’s Nursing Home Compare, where you can look at a star rating scale. But I would look at it carefully — it’s based on a lot of self-reported information from the nursing home, so don’t just look at the number of stars, but what it says behind those stars. The nursing home my mother was in only had two stars [out of five], but I went to the facility and looked at it, and I also looked at the state Health Department surveys for it, which tells you where the problems are.
Aging Edge: So we assume if you do enough research that satisfies you a home is worth looking at, you should make a person visit or tour. What should you look for?
Menio: Try to talk to the staff, talk to the residents. If you’re getting a tour, there shouldn’t be something wrong with stopping to talk to somebody in a wheelchair, bending over to introduce yourself and saying, “I’m thinking of having my my mother here, what do you think?” If someone objects to your doing that, I’d be worried about that. There should be an opportunity to talk to people on the floor, even stay around and see what activities happen. I remember going in to watch physical therapy when it was happening.
Aging Edge: If you’re not wanting to approach strangers to ask questions or everyone seems too busy to talk, what other things should you pay attention to?
Menio: Lots of times you hear people say they’re concerned about odors they smell, and lots of times you can’t eliminate odors altogether, but there’s a difference between something that’s a momentary thing and something that won’t go away. People usually have a sense of that. If you see people just hanging in the hallways and not having any stimulation, I’d be concerned about that, and that’s something we see. I’m talking about times when it’s obvious — they’re just sitting there nodding off.
Aging Edge: Some people base their decision on what’s closest to them. Is that wise or a problem?
Menio: It does often come to your wanting a place where it’s a lot easier to visit someone. Proximity alone isn’t a good reason, but for some people it may be more important than others because they can’t travel. But you may want to take into consideration other things as well, like if you like to sit outside and there’s a nice garden for that, or maybe that the doctor you like is there, or maybe when you went there you could see that the staff is so caring.
Aging Edge: Once you decide the place you want, is there anything important to consider during the admissions process?
Menio: One thing people should be aware of is admissions contracts almost universally have an arbitration agreement in them [in which people give up their right to sue the facility] and we tell people they should be concerned about that. If there was bad care, and you thought it was egregious, you wouldn’t be able to go to an attorney to file something. I crossed it out on the admissions form when I placed my mother, which you can do, but I think most people sign and they’re not even aware of it. It’s part of this big, long contract given to people who are under a lot of stress when coming in, and they just want to get it over with.
Aging Edge: Once a relative begins living in the nursing home, what’s the best way to be effective advocates for their care?
Menio: The one thing I tell everyone is visit — visit as often as you can. For some people it’s every day, for some it’s once or twice a week, but be there whenever you’re able. Nursing homes are really not staffed as well as they should be, which is a big problem, but if you’re there, you can be helpful. If my mother needed to be fed and I was there able to feed her, that meant a staff person didn’t have to feed her, which takes longer. You also meet other family members there doing the same thing, and if I wasn’t there, they’d help my mother, and I’d do the same for them. It also means you get to know the staff, and some of the information I was able to give them about my mother helped them understand better how to care for her. I do think you’re going to get attention in a very different way if they know somebody cares. I’m not going to say somebody’s neglected [if they don’t have visitors], but I’d rather be on the safe side. It can be stressful, but one thing people tell you is caregiving doesn’t stop just because a person has gone into a facility.
Aging Edge: I’ve heard from people saying they were accused of being too pushy with the staff and even barred from the facility. Is it possible to go too far on behalf of a patient?
Menio: The first thing is if there’s something taking place that you don’t like, try talking to the nurse there, or talk to the director of nursing or administrator. You should be polite, but it’s an upsetting situation — let them know it’s something you care about and want changed. If you have a good facility, what they’re going to do is listen to you and make a change.
Aging Edge: And if they don’t?
Menio: That’s where the ombudsman comes in. (Each county’s Area Agency on Aging has an ombudsman program — in Allegheny County, call 412-350-5791.) We focus on resident advocacy, and it’s really speaking on behalf of the resident. If a daughter calls us about something, we’ll go ahead and talk to the patient to get their permission to try to resolve the complaint. People can try to resolve things themselves first with the facility, but if they don’t feel comfortable or it doesn’t work, they should make their complaint elsewhere. In a case of abuse, they may want to contact Older Adult Protective Services or the Department of Health.
Aging Edge: What’s the success of ombudsmen generally in getting nursing homes to make changes based on the complaints from consumers?
Menio: Some nursing homes are more reasonable than others, but many times we can work these out. The ombudsman does have a role, and in most cases facilities know we’re there for a reason.
Aging Edge: What’s an example of a common problem you help with?
Menio: We’ve been dealing with a lot of illegal discharges. Nursing homes provide skilled care to people for a certain period that’s covered by Medicare, and some people simply can’t go back home again [after Medicare coverage runs out in 100 days], and if a person needs to stay they should be able to stay. If a person is private pay, that’s not a big problem, but if they’re Medicaid-eligible, it doesn’t pay the nursing home as much, and they may want to try to keep their beds open for Medicare patients, which pays more. If we’re called, we’re almost always able to resolve that, but many times people don’t challenge it.
Aging Edge: How much do you think people can rely on the state Department of Health to make sure nursing homes are providing quality care?
Menio: There’s been a lot of documented issues that caused concern, and we continue to have concerns, but I believe as a result of some of the work exposing the problems that the Health Department is responding. It’s still going to take time to see what the impact is, but I think they’re definitely trying to make improvements.
Aging Edge: It turned out that you were pleased with the care your own mother received. In what percentage of homes today do you think that would be the case?
Menio: I’d say 70 to 75 percent of the places are OK if you’re vigilant and doing everything you should do to help manage the care. They’re required to have a quarterly care plan update and meeting in the facility, and the family should always be involved in that discussion. I think most places are going to be OK as long as you’re vigilant.
Gary Rotstein: email@example.com or 412-263-1255.