How LTC Can Partner with Patient Advocates (Episode 12)

February 12, 2018

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Darcy Grabenstein: Hello from SmartLinx Solutions! In today's podcast, we'll talk about how long-term care facilities should view patient advocates as partners, not adversaries, and how they can work together. My guest today is Teri Dreher, a registered nurse with 36 years of experience and president of NShore Patient Advocates. She is committed to helping patients navigate acute illnesses and reducing the possibility of medical error.

Teri is nationally accredited for RN Patient Advocacy, a member of two national RN advocacy organizations, and a board member of the National Association of Healthcare Advocacy Consultants. Welcome, Teri.

Teri Dreher: Thank you, Darcy. It's good to be here.

DG: Before we get into our topic today, can you give me a synopsis of the types of services that you offer at your organization?

TD: Sure. In the Chicagoland area, we are really focused on the sickest and the most complex of clients. About half of our clients are adult children who bring us in to help with complex issues with their parents, and about half of them are actual patients themselves that are lost, frustrated, angry, confused, or upset for a variety of reasons about modern healthcare, and they don't even know the right questions to ask. We do have about 10 or 12 other advocacy organizations in the Chicagoland area, but our company is the only one that hires exclusively advanced practice nurses, and we believe that nurse advocacy can cover a wider scope of different problems that people see. We do not only care management, but we also have the different layer, the extra layer, of protection that only nurses can provide because we understand the system and we love complex cases. We know how to do assessment and talk to healthcare practitioners, etc.

DG: Great. Well, thank you. So, I've got to ask you, because you do have a lot of RNs on staff, do you focus solely on medical issues, or what about legal or any other type of issues that someone might face? Do you advise in those areas or do you serve as a referral agency? How does that work?

TD: No, it's ethical and illegal for nurses to give legal advice, so I understand the parameters. I mean, I know a lot of attorneys, both medical malpractice attorneys, elder law attorneys, and estate planning attorneys, that I very easily refer patients to if they need documents set up. Across the gamut, we will take care of the medical documents and the elder law attorneys or the estate planning attorneys can take care of the documents needed for legal protection. Financial wealth managers, they take care of the financial part, so we don't really step into their territory. Even though we know a lot of what they can do, we refer clients to those specialists.

DG: I want to back up. I mentioned the National Association. Because you're based in the Chicago area, are there similar organizations like yours in other states or other cities, and how would someone find them?

TD: Yes, OK, that's a great question, Darcy. There are three main National Healthcare Advocacy organizations in this country. The first is the National Association of Healthcare Advocacy Consultants — and, by the way, I'm not on the board there anymore. I recently came off the board, but I was on their board for almost two years. My practice just got too busy. The other one is the Alliance of Professional Healthcare Advocates, and the third one is the Private Professional Advocacy Institute. All three of those organizations are made up of healthcare advocates from a wide variety of different backgrounds, both medical, non-medical. Some of them are social workers. Some are simply family members who have learned how to advocate for a particular niche market, and they are also working as private advocates.

The other organizations — so people can go to the websites of NAHAC, or APHA, or PPAI — there's another one that has a lot wider base that's called the Aging Life Care Association, and that's a group of mostly care managers. Some are RNs but most are social workers, and they do private and public care management, which is very similar to what we do. Those four websites will have large databases, so people can just put in their zip code and find an advocate or a care manager close to where they live.

DG: Great, thank you. I just have to say that was a lot of acronyms! So, for any of you listening out there, just so you know, we do have transcripts of all our podcasts on the site, so you don't feel like you have to be taking copious notes.

Teri, who can benefit from these types of services, and particularly as they relate to long-term care? How can they benefit from what you do?

TD: Well, sure. We benefit not only the client, but we also benefit hospitals and long-term care facilities. A lot of times people hear the word “advocate” and they immediately start thinking legal, like we're scary. We're not scary. We are professionals who have worked inside the healthcare system, and outside the healthcare system, and we are specializing on community advocacy and support, just like people who work inside facilities or healthcare institutions specialize in that area.

I worked in intensive care for 39 years before I started my business, and I loved that real hands-on intense care of one or two patients as a time. The reason that I left, really, was because of a lot of the changes that our country has seen over the past 10, 12 years. It has become very fast paced, very focused on documentation, insurance has skyrocketed, and people are just, frankly, really confused. Sometimes when people don't have a medical professional in their family, they don't even know the questions to ask or how to do such basic necessities as we age, as how to determine whether or not your parents need in-home caregivers, if they need assisted living, if they need skilled nursing care. What do they need? What's the most cost-effective choice, and where are the best facilities in the community? Quite frankly, hospital care managers have never been in any of the facilities that they're referring clients to. They don't know what the rehab facilities look like. They don't know what the long-term care facilities look like.

The hospital's knee-jerk response when an older person needs to leave the hospital and they're very weak is to try to put them in an in-patient rehab program. That's not always the best choice. Sometimes it's better for the patient to go home with home healthcare and physical therapy, coming into the home, and then the family can work with the home healthcare company. It depends on how impaired the patient is, but a lot of times they don't hear all of the different options. Because we are a private-pay-only organization, our allegiance is only to the patient. We have no cookie cutter sorts of offerings that we give to people. It's like hiring a nurse in the family, so we become very, very close to our clients. They develop a high level of trust. We lay out all the different options for good choices no matter what their choices are, and then support their decision. They stay in the center of the model of care.

A lot of people really are not feeling like they're in the center of the model of healthcare anymore. It's very much assembly line. Get them in. Get them out as fast as possible. Doctors don't have time to talk to patients like they used to, and I think patients deserve more. They deserve more teaching. They deserve more education in a wide variety of different areas, and they deserve more attention and more close assessment and monitoring. It's a different world in healthcare right now, and it's kind of scary, especially for senior orphans and adult children who are struggling.

DG: I never thought about that, that term senior orphans, but it's a very good point.

TD: Oh, yeah. Yeah. That's our niche market. We love coming along senior orphans. Now, senior orphans are not only people who have no family left whatsoever. Sometimes they're people who are struggling with healthcare, and their adult children are on the other side of the country, or they all work and have very high-pressure jobs, and they just don't have the time, or the expertise, or the emotional wherewithal to give parents the kind of time that they need. As people age, they get a lot of problems sometimes, and if you're trying to raise your own family, work full time and care for your parents as they develop problems, that's a tough, tough position to be in. I think the sandwich generation in America, those middle-age people who are trying to still raise their kids and take care of their parents, that is the most stressed-out demographic in America today, so a lot of times, they hire us, but we're also getting more and more referrals from care managers and hospitals and physicians who are starting to understand the great value that we provide for them.

DG: Yes. I mean, I know exactly what you're talking about. My mother was in a long-term care facility, and her health declined. Like you said, I didn't even know the questions to ask, and luckily, I did have someone kind of in the family. My son's girlfriend was in school to become a physician's assistant, and I actually called them, had them in on a conference call with the doctor so that she could ask questions that I didn't know to ask so, yes, very valuable service there.

TD: Yeah. It really is. A physician assistant, nurse practitioner, or an RN patient advocate can ask all kinds of questions to help assess looming problems instead of problems that have already happened or the ones that really want to know about skincare, about physical activity, about lab values, about treatment modalities. Make sure that none of the medications are interfering with their progression to wellness. Honestly, when I have a patient in rehab or long-term care, if it's possible, I really focus on getting them home as quickly as possible if it's possible. Sometimes it's not, so then my focus becomes knowing where the best skilled care facilities for long-term placement are and always pointing my clients in the direction of the highest quality. Honestly, family members do not know how to choose a quality long-term care facility. They just don't.

DG: Teri, I have to ask you, when staff at a healthcare — and you mentioned the word scary before — but when staff at a healthcare organization hear the words “patient advocate,” do they typically cringe, or are you more widely accepted these days?

TD: Oh, I think it's becoming a more widely accepted and known about specialty. It's an emerging specialty that is going to keep growing and growing and growing. When I go into a long-term care facility and I may have a client in that facility, I talk to the nurses. I bond with the nurses. I let them know that I am not the enemy at all. Sometimes these places have what the nurses come to view as high-maintenance families. Families that are strident sometimes, critical sometimes, and want to take up too much of their time asking questions.

When a patient advocate is onboard, we can spend as much time as the family wants, but the nurses in the long-term care facility and the executive director, the administrators, they do not have the time anymore. They're limited very much by low reimbursement figures. Everything has changed lately, and long-term care facilities are really, really struggling. So many are going out of business, and they're struggling to keep the place going. It's very hard for them, and the long-term care facilities, sometimes they have such financial pressures they will start laying off nurses and aides because that's the easiest way to save money. The more they cut the nursing staff and the aides, the less time they have to do the things that patients and families really, really need, and really, honestly, Darcy, nobody working in hospitals or nursing homes has the time to do the education that nurses used to do as a matter of routine.

DG: Right. I think you just answered — the next question that I wanted to ask you was about how you make jobs of staff easier. I think you pretty much addressed that.

TD: Oh, we do. We say, "Thank you so much" I mean, all the time because I know how hard it is to be a nurse in an acute or long-term care facility today. When I was in my 50s and I started developing physical problems from lifting up 300-pound patients all day, it just got to be so — and I was working 12-hour shifts. Sometimes I would come home at the end of the day and just soak my feet in ice. I was going to the chiropractor twice a week just for maintenance because it's so physically difficult, and it's emotionally difficult too. Nurses get very close to patients, and they feel their pain. They want to make everybody better, but they just can't with the staffing being what it is today.

When I had a recent patient in a long-term care facility for three months, I used to go in and sit down with the executive director all the time, and just point out what her nurses were doing that was fabulous. I used to send food. I used to send flowers. I would say “thank you” all the time to all the great nurses and aides. I would address them respectively: “Thank you, sir.” “Thank you, ma'am.” “I really appreciate you going the extra mile.”

Most family members and other people who come into the facility don't do that, so a kind word or a gesture of thanksgiving can do so, so much. I try to model that for my family members too, and really teach them how important it is to communicate really effectively with people who are taking care of your family. A lot of people think that the squeaky wheel gets the grease, and that's totally wrong. I mean, staff just avoids problem family members, angry, burnt out, frustrated family members that are scared to death that their parents are dying. They're acting angry when they're really afraid, but the nurses are traumatized by all of this negative feedback and accusatory stuff that goes on in healthcare today. Nurses, there's more and more evidence that's coming out that nurses are regularly kicked, bitten, spit at, called names.

DG: What, really?

TD: Oh, my gosh, there was a case at a big hospital in Chicago recently where an actual police officer came in and started beating up a nurse who refused to give a blood sample on a patient because of HIPAA regulations. The police officer wanted that blood sample to prove that the patient was under the influence, and the nurse protected the patient's rights. On video, somebody captured this police officer who was actually physically beating up a nurse.

DG: Unbelievable.

TD: Patients do that too all the time. Psychiatric or dementia patients will sometimes be physically and emotionally abusive. I've heard more terrible stories, so for everybody out there who doesn't know how hard it is to be a nurse, go the extra mile. Say something kind to a nurse. Find something that they're doing right or the home health aides that are spending — the CNAs that are spending most of the time with the patients these days.

DG: Yes. They are.

TD: It's a hard job. Always show appreciation and show respect because they have intense burdens that they're under today.

DG: They do. Let's talk about something positive.

TD: Okay. Sorry!

DG: Could you give me a specific example of how you've successfully advocated on behalf of a patient and the outcome, just an example of something that you've done?

TD: In a long-term care facility or outside of a long-term care facility?

DG: If you have one in long-term care, that would be awesome.

TD: OK. I had a patient recently in a long-term care facility that was really a great place, but because of the patient's insurance, he had to have a certain doctor who was not a very highly rated doctor. This doctor, he was foreign. We met him in the hospital. He actually referred us to this long-term care facility that turned out to be a great place. This doctor, he was just arrogant, unavailable, would not answer phone calls, and had already given up on the patient. He had chronic renal failure, and he did not want to go on dialysis. That was the patient's wish. He had a lot of other problems.

He really was OK with dying, but this doctor was just driven to put him on all kinds of life support. In that situation, after about the fourth time that this doctor actually verbally — it was coercion, really. It was such high pressure. I just stood up and said, “Excuse me. We've talked about this for four times before, and my client is very clear that he wants no type of life support at all. He does want medications to help him become more comfortable, and you have been refusing to answer our calls. If you're not willing to provide some sort of pain relief for this gentleman that is having more and more pain as he gets sicker, then I'll go to one of the other doctors.”

He just stormed out of the room, but the patient did have a couple of other doctors. I hate to say it, but sometimes I see nurses get used to, if one doctor says no, you just go to another doctor until you get what's best for your client. I did go to another doctor. We did get some medication that improves the quality of life for the patient who did not want hospice care, but he did want comfort care. Pain control is a basic patient right, so it's really unethical for a doctor to refuse pain medication. That doctor was just really mad that we weren't going to call on all the big guns, and spend all the excessive money, and do dialysis, and do all these other things that was not going to improve the quality of his life long-term. He was ready to go.

DG: You mentioned life support and that type of thing. Wouldn't that be in a patient's records? Would they have a directive?

TD: Yes. It was. Yeah.

DG: It was.

TD: I had had a directive in the patient's chart for over a year, and that doctor wanted to rescind the do-not-resuscitate order in order to go forward and do dialysis and do other forms of prolonging the patient's life. It was one of those things that the doctor was just mad that we weren't going to go along with his way, but I did stand in the gap. I did get the patient the pain medication, and we did do other things that we were able to do to make the patient more comfortable. I was able to get a comfortable chair donated to him so that he could sleep in the chair in a real cozy electric recliner. All kinds of other things we were able to do, and we brought in the patient's son and did a reconciliation that brought a lot of emotional and spiritual peace of mind to the patient. The patient had been estranged from his only living relative for over a year, and we were able to resolve that.

DG: That's huge.

TD: Yeah. It is. It was a tear-jerking moment, really. It was beautiful. We even brought in his ex-wife and did a reconciliation too. Just all three of those family members were so relieved and had such peace at the end because we were able to put all that together.

DG: No. I just have one more question for you. We talked about how you help long-term care facilities. What are some ways that long-term care facility staff can work with patient advocates to improve quality of care?

TD: Sure. We do. That's a good question. We do a lot of care conferences at long-term care facilities, and once they understand that there — we are not there for any kind of legal reason whatsoever. We are there to improve the quality of life for not only the patient but the entire family, and when we can all work together as a team, it's just really beautiful. When they understand what our role is and how supportive we are to not only the patient but the facility and the people who work in the facility, their fear level goes down. If I ever do see something that's just wrong, I will go talk to the manager or the executive director. Rarely do I do that because I use such positive reinforcement when I have a patient in a long-term care facility that everybody seems to respond to that, and they go the extra mile and out of their way.

In this one particular case I was talking about, I got really close to one or two of the nurses who were the primary nurses of my client. Every time I came and talked to them about the lab values, or what was going on, or what kind of changes we had, I always took a moment to just really compliment them on what they were doing and to notice all the extra little things they were doing to go out of their way, and they were so cooperative. They were so thankful. They were so grateful to have somebody there who understood what they did. The director of the unit was very quick with getting us any paperwork we wanted, any kind of documentation. We always prevent a medical record release and a HIPAA release when we're in those situations. They understand that we're working on the family's behalf, and we have a right to all that information. Most people who work in healthcare are goodhearted people that are doing the best that they can.

DG: Yes. Thank you so much, Teri, for showing us how long-term care and patient advocacy go hand in hand, and to all our listeners, thank you for tuning in. For more information on NShore Patient Advocates, visit NorthShoreRN.com. If you'd like to learn more about SmartLinx Solutions and our fully integrated suite of Workforce Management Solutions, visit us online at SmartLinxSolutions.com.

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