Posts Tagged ‘chronically ill’

Meet Healthcare Case Manager Sheryl Riley: Survivorship Critical Next Challenge for Care Managers

October 1st, 2012 by Cheryl Miller


This month we provide an inside look at a healthcare case management manager, the choices she made on the road to success, and the challenges ahead.

Sheryl Riley, RN, OCN, CMCN, Managing Partner, Clarion LLC

HIN: You’ve spent nearly a decade working in the field of oncology as a case/care manager. Can you briefly describe your work history?

Sheryl Riley: I started my career as an LPN and then in 1985 got my RN degree as well as a degree in business. At that time I was not involved in oncology but in cardiac disease, intensive care unit (ICU,) critical care unit (CCU,) step-down unit. Approximately five years into my career, I was approached by a group of physicians who asked me to help them build an intravenous (IV) infusion company. This opportunity is where it all started. I learned how businesses are run, how case management can work in case or care management in so many different areas, not just telephonically but in the home as well.

For example, we were called by a health plan to assist a patient who needed chemotherapy in the home, which was extremely progressive in late ’80s, early ’90s. We were doing IV antibiotics, partial parenteral nutrition (PPN) and enteral therapy, which were simply routine therapies, however, I soon realized there was more to it. Thus began a quest to build care management with an IV infusion component. During the 10 years that I worked in IV infusion companies I really attempted to spread the idea of care management, which enabled me to put together a new type of IV infusion nurse program. I had a great time with the last company that I ran; we opened up offices all over the country and built a model not only in the home but in some acute facilities. It really created some exciting opportunities to do some innovative care management around IV infusion therapy and things like dopamine therapy. We were able to take it out of the hospital ICU and translate it into sub-acute facilities because we had the ability to start the lines and manage the critical cases. Though their cases were complicated they were no longer critical cases and they were able to return home. We didn’t want them to have the cost of the hospitalization, so we managed them in sub-acute facilities for about a quarter of the price.

But the real breakaway came with the building of the first care management oncology program ever in the early ’90s here in New Jersey with an entrepreneur. We built our own computer system to go with it and we had nurses on the ground in other parts of the country. I would go in and visit with oncologists and speak with them regarding the concept and how the program operated as well as show them the value of our oncology nurses. At that point Humana and United were on board and we were in negotiations with Aetna. We were working in the Florida, Pennsylvania and New Jersey markets.

It was very, very exciting, because we created care paths based not just on diagnosis but nutrition, exercise and side effects management, in addition to end of life issues. If need be we also addressed respite care, babysitting, and pre-emptive issues for those that were younger with cancer such as sperm banking and egg banking. We created pathways based on disease process and trajectory of disease and it wasn’t your standard pathway. I worked with a team of highly skilled and trained oncology masters prepared nurses. When we sat down we not only created a pathway for the nurses to follow but a patient pathway as well, taking into account the National Comprehensive Cancer Care Network (NCCN) guidelines. We were focused on making them patient-centric even before it was a popular notion. It was also important that the program be on a computer system that either could be accessed easily by the patient and nurse as well as have a printable form.

So we kept building on my care management. Today they call it care coordination, which is the model inside the ACO. Currently the American Nurse Associations (ANA) and three other groups have put out white papers on care coordination models utilizing RNs. It is really care management as we know it, but they’re calling it care coordination because I think some people get confused with case versus care. About ten years ago I wrote an article on the difference between the two which was pretty progressive back then because case was really based on non-clinical aspects. It was simply considered moving somebody from a high level of care to a lower level of care around cost and service, with minimal regard for the clinical aspects of what they did. It wasn’t only clinical people doing that.

The crux of care management is making patients feel secure and empowered about the decisions that they’re making, with your help. One of the biggest changes in my career came when I realized that patient education wasn’t about me telling them what to do, it was them telling me what their goals were and then me trying to help them find a way to help them achieve those goals. That was my most exciting revelation: really understanding how to change behavior, how to reach that person who could never be reached before. That to me was probably one of the most exciting things.

HIN: What are some of the challenges in working with this population?

The biggest challenge is that people don’t know how to define care management. I have to tell some of my private patients, I’m not here to deny you care. I’m not here to disallow you anything. I’m here to expand your knowledge and work with you to find the best resources and the best opportunity for care for you or your family member.

The other challenge that we all face in oncology is that eventually, many of our patients will succumb to their disease and that is one thing that you cannot change. You’re going to cheat it occasionally and you’re going to help them hopefully experience the best quality of life humanly possible that they can achieve with your guidance. Yet it is hard every single day knowing that 50 percent of your population won’t make it. It’s not like dealing with a surgical patient that’s going to get better or even a diabetic, because they probably have a longer life expectancy. That aspect of my job I have learned to accept and embrace, because we learn so much from our patients at every stage of their care.

Given the many strides we’ve seen in the treatment of cancer, we are now seeing an upswing in survivorship, which is fantastic, but it opens the door to a new aspect of oncology care management, care of the survivors, not just immediately but 10 to 12 years down the road when the effects of the treatment can be seen on their vital organs.

We now have over 50 percent of the population surviving. The question that remains is how to best manage their needs. You’re dealing with drugs that have ravaged the body to kill cancer, but have also had deleterious effects including weakened bone, bone marrow and organs, particularly the heart and the lungs. Now these patients face cardiac anomalies, lung problems, bone problems, bone marrow problems and possibly down the road a lymphoma or something of that nature. So survivorship is the next big challenge that we face with this population. And with survivorship, there also is a level of emotional instability, because a quarter of the time, patients may lose their spouse. The spouse will divorce them or walk away from them. So what I see many times, when a person survives, the family is so excited about their survival that they’re just overwhelmed. But the patient feels like they survived for a reason and they want to give back. They want to get involved with others so that they can help them survive. And the families sometimes say: “I’m done with cancer. You’re done with cancer. Walk away!” And many of the survivors feel like they’ve been given a gift and they want to share that gift, however there are some family members who can’t deal with that so they will face those issues as well. Though there is much challenge dealing with the death, the dying, the helping with the decision making, the next big challenge for us as care managers is survivorship. And how are we going to help the patients manage this process as well as the family.

HIN: Will care managers need particular training for this sort of thing, for survivorship?

Yes. I think that we have spent our careers dealing with death and dying, and now we need to begin to educate ourselves on survivorship. I’m not going as far as saying there should be certification for it, but it’s definitely another line of education that we need to look at. And it’s out there. The Oncology Nursing Society (ONS), the NCCN and the National Cancer Institute (NCI) are starting to come out with survivorship programs.

But not a lot of care managers are taking advantage of them, given their lack of time. It’s disheartening because the real collaboration between oncology care managers really isn’t there. The majority of the 29,000 oncology nurses that belong to ONS are still working within hospitals and doctors’ offices, and haven’t truly embraced the care management mantra and what it stands for. They’re giving chemo. They’re trying to manage the patient there at the chair side or the bedside or wherever. But they’re not really out in the community. They’re not out in the patient’s home. They’re not taking a lot of phone calls after hours. They’re dealing with it all through a 9 to 5 job, Monday through Friday at a hospital or in a private office. For those of us that deal with our patients on a telephonic basis or a home basis, or go to the doctor’s office with the patient and get involved from the care management perspective, we feel that there’s a need for us to talk and learn from each other.

I learn so much from all other care managers. Listening to what they do, how they do it, when they do it, how they intervene, things they say, for me that’s the best part of the experience. If we could break down the barriers between nurses and become a truly collaborative group, we would have the largest voice and the best opportunity to change process anywhere in the country.

HIN: What do your chronically ill patients value most? And how can we align those goals for case management in the healthcare industry?

Chronically ill patients need education and resources. And the care manager is pivotal in finding those sorts of things. When I look at a patient who says: “I can’t afford this,” or “I can’t afford that,” regardless of disease, it’s my job to understand their financial situation and try to find drug assistance or services for them, community services from local organizations, and national organizations when necessary. These are things they can’t find on their own. Another role that we play is being there to help them organize their visits. If they’re seeing five different doctors, find out why. If they’re on a generic brand of one medication and a name brand of another, make sure their doctors are aware and work it out with them. It is quite possible that they don’t need to see five doctors. For example in the 65 and older population they may just need to see a gerontologist instead.

Care managers add a unique value to the chronically ill patient because healthcare is an ever changing venue and they need assistance when it comes to understanding plan benefits and when those have been exhausted where the patient must go to find appropriate resources. Especially for chronically ill Medicare patients, we need to help them find resources. We need to find churches and community services, national organizations and friend, family and relatives and whatever necessary to pull it all together. It is important to consider their caregiver as well. If you’ve got a chronically ill 85 year old who is taking care of a chronically ill 90 year old, you’ve got issues. We help them deal with all of that. I personally think if you take care management away and the chronically ill will fall prey to so many more issues. There is a disturbing trend going with the chronically ill population but if these patients needs can be recognized early on then more can be done to utilize our healthcare dollars more effectively. The people that are 55 right now, that are teetering on diabetes, hypertension, teetering on being chronically ill, in 10 more years they may be chronically ill. More than likely they are already on some medication. Their diet is terrible. So dealing with chronically ill patients is easier because they know they need your help, they know they need some resources and they’re willing to listen to what you have to say. It’s the population that’s growing into chronic care where we have the biggest problem, because they’re still working, active everyday, and somehow you need to change their behavior. And that’s got to come from somebody. And I really think that care management can make a difference there.

Years ago I had set up programs for employer groups where you would go to the site. If they had warehouses, we would send a nurse in to do a little health fair and take blood pressures and cholesterol screenings, have them answer all these questions. You would get 90 percent of your risk assessments done at these screenings. It was great because now you could begin to focus on those people that really needed it. This environment was also perfect for group programs. Many times you would find that in this plan you had a high incidence of hypertension and diabetes. This presented an opportunity for people to learn in larger groups and identify with other with the same condition. It’s better when people learn together, especially at that age. Because it’s like:
“Oh, Joe, you have the same problem I have. I like that Mexican food, or I like that Italian food. Or I like my beer.”
Okay, let’s design programs so that you can have some of those things without depriving yourself of everything. You need somebody who understands chronic illness, understands care management, understands resources. And that’s why I think the care manager has the advantage. They know all of those things. They can act a little bit like a social worker, a little bit like a physical therapist, a little bit like a nurse, a little bit like a case manager from the health plan, and they can pull it all together for a patient. I don’t think any other entity can do that except for a care manager.

HIN: Where do you see case management going in the next five years?

If you’re going to take 40 million Americans and throw them in Medicaid you’re going to totally blow up the system. I think that will have a negative effect on our Medicare population as well as what care managers can and cannot do. Instead I hope to see more of the larger clinics and larger facilities take on care managers. There is a slight problem with that plan, as I said earlier; there is a whole trend of moving from the word care management to care coordination. When situations are in a state of flux even with the support of whitepapers supporting RNs as the care coordinator, you see if you change the word to coordination you’re really eliminating medical management, any medical aspects, because what they’re thinking that you’re only going to do is coordinate their services. Most of the general public do not believe that you need an RN to coordinate services. If you look at the way the new models are set up for care coordination, they are RN models. There’s an RN and a social worker in a non-clinical model. The RN model allows for all the aspects of care management. Leaving the question as to why are they changing the title to care coordination. I personally don’t understand it and don’t like it. I have to teach it. I have to try to explain it to clients and to nurses, but I truly don’t understand except that they’re trying to diminish the role of the nurse and put non clinical people in these roles so that they don’t have to pay the rate of a highly trained nurse or care manager. And that is frightening. That is scary. I really don’t want to see that happen. We’ve come such a long way.

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