Advocate for cancer patients to help them meet the treatment challenges

Case managers help patients navigate through health care system

When Nancy Skinner, RN, CCM, was diagnosed with lung cancer in 2004, she asked her health plan for a case manager to help her navigate through the health care system during treatment.

She was turned down.

"Either I wasn't in the hospital long enough or my costs didn't trigger a referral to case management and they said no. I called on my friends in the case management community who were very helpful to me," she says.

The experience prompted Skinner to speak out in support of case management and other assistance for people undergoing cancer treatment. A case manager for more than 20 years, Skinner is past president of the Case Management Society of American and currently serves on that organization's board of directors. She also serves as a consultant for Riverside HealthCare Consulting in Whitwell, TN.

"Because of that diagnosis and my experiences, I have very much become an advocate for appropriate delivery of care for anyone who has the diagnosis of cancer," she says.

Although Skinner had been managing the care of patients in a multitude of health care settings for many years, she found it difficult to manage her own care.

"When you are diagnosed with cancer, your brain freezes. No matter how smart you are and no matter what your professional background is, there is this, 'Oh my God, I'm going to die factor' that makes it difficult to decide what you should do," Skinner says.

Even people who have spent many years in the health care field find it difficult to navigate the health care system and come up with a treatment plan, she adds.

"It's very easy to get lost in the wilderness. We all need case managers to help us find our way," she says.

It's much easier, as a case manager, to help someone else make a decision about a cancer treatment option than it is to make decisions for yourself, she says.

"There aren't any good maps for patients to follow. We all go on quests for information that sometimes leads to appropriate treatment and sometimes takes us in a direction we don't need to go," she says.

People with a diagnosis of cancer are faced with myriad treatment options, but for the average person, knowing which to choose is very difficult, says Catherine M. Mullahy, RN, BS, CRRN, CCM, president of Mullahy Associates LLC, a Huntington, NY, case management consulting firm.

"People with cancer are looking for information so they can make an informed decision. These people need someone who represents their interests and can help them choose the best option for them. A case manager is a trusted person whose primary focus is the patient and who shouldn't have a vested interest in recommending a particular treatment," she says.

Patients undergoing treatment for cancer are frightened by the disease and by the treatment process. They undergo multiple procedures, often in multiple locations, and the treatment team sometimes doesn't communicate with each other, Skinner says.

"We in health care always talk about the continuum of care but the way our health care system is structured, patients don't see the continuum of care. Health care is separated by buildings, networks, and health plans. Patients are challenged to figure it out in a timely manner so they can get the treatment they need as quickly as possible," Mullahy adds.

Case managers are in a position to assist people with cancer in making choices and to work as an advocate with health care providers, she says.

"Nurses have always been viewed by patients as people who are easy to talk with. They have good communication skills, they are knowledgeable, and they always take the time to listen," Mullahy adds.

Cancer case management can extend from diagnosis, through the course of treatment, and on through survivorship to address the patient's ongoing challenges caused by their cancer treatment, Skinner says. Many patients with cancer don't understand the next step in their treatment plan or what impact the treatment may have on their body and what the side effects may be, she adds.

"Sometimes people turn down treatments, such as radiation or chemotherapy, because they hear stories about the side effects, but there are so many agents available that can eliminate symptoms. Many patients don't know they are out there and often physicians do not have the time to educate them," Mullahy points out.

Case managers do have the time to listen to cancer patients' fears and concerns and when they find out what problems the patients are experiencing, they can communicate them to the treating physicians, she says.

Getting a handle on cancer can be a challenge for patients and case managers because cancer is actually a big umbrella of diseases. All cancers have a common pathophysiology but each form of cancer is different, Skinner points out.

Unlike other chronic diseases, which have best practices of care, every case of cancer is different and necessitates an individual treatment plan.

"With diabetes, there are guidelines and decision trees that can be used to determine the course of treatment, which is somewhat similar for everyone. With cancer, the care depends on the type of cancer, the stage, how invasive it is, and what treatment options are available for that particular type of cancer and that particular type of patient," Skinner says.

Case managers have an opportunity to help patients with cancer regardless of settings, Mullahy points out. As a case manager, you should be knowledgeable about cancer resources available in their community and should educate yourself on treatment options and the plusses and minuses of each, she adds.

For instance, find out if there is a center that specializes in cancer treatment. Find out about support groups in the community, and programs, such as the American Cancer Society's Look Good, Feel Better program, Skinner says.

Recognize that the care and availability of certain services may differ depending on the patient's geographical location.

Case managers in all settings typically perform functions such as assessment and planning and that is where they can help cancer patients most, Skinner points out. First, learn as much as you can about the particular type of cancer and help the patient become educated. Look at your client's disease and how invasive it is. Research available treatment options, including clinical trials.

Develop treatment goals. For some patients, the goal is resolution of the disease. For others, it may be palliative care for cancer pain, Skinner points out.

"Don't think that there will be one master plan for every patient with cancer that you can tweak to adjust for differences in the severity of illness. What cancer patients need is a unique plan for their particular disease, based on the ability of the health care system to cure the disease or manage the disease or manage the pain," she says.

Cancer is probably one of the top five diagnoses among members of most health plans, according to Mullahy.

If your health plan doesn't have resources that help you manage the care of cancer patients, advocate for a strong oncology expert to serve as a mentor and a resource for the department, she adds.

If you are a case manager in individual practice, look for help from a nearby medical center, she suggests.

Attend community conferences sponsored by cancer treatment facilities in your area to learn about treatment options that are available, Mullahy suggests.

Learn about cancer web sites with evidence-based information and use them to improve your own knowledge and refer your clients to them as a resource.

Skinner suggests accessing the National Comprehensive Cancer Network (www.nccn.org) web site. "The organization will send patients and health care professionals a CD that includes information on primary cancer diagnoses and evidenced-based guidelines for treatment based on the type and stage of cancer," Skinner says.

If you don't know the answer to a question from a patient, acknowledge that and tell the patient you'll find out the answer, Mullahy suggests.

"Each case manager needs to know his or her own area of expertise and look for help from their peers if they don't know something. It is a disservice to patients to pretend to know something when you do not," Mullahy says.

If you refer your clients to cancer centers of excellence in other cities, help them make the transition back home by ensuring that they have support and expertise for follow up after the acute phase of treatment is over, Mullahy says.

"Many times patients return to their primary care provider for much of the follow up and if that physician is out of his or her element, the patient will not be well served," she adds.

Case managers should continue to address the needs of cancer patients as they move forward, after active treatment, Skinner suggests. Your role at that point may be to help your client come up with a treatment plan that addresses complications from the disease or the treatment, she adds.

For instance, a lot of people experience side effects from the treatment that impact them for the rest of their lives. Make sure the patient understands any complications or treatment side effects and how to minimize them.

Work with the patient and his or her physician to come up with a treatment plan to address cancer fatigue, caused by loss of white blood cells during chemotherapy and radiation.

Expect your patients with cancer to be on an emotional rollercoaster, Skinner says. Put them in touch with a social worker or mental health professional if necessary.

"Some days I wanted to cry. Other days I was angry," Skinner says of her experience. "My emotions were up and down."