GeekingCare: Navigators, Coaches, & Patient Experience In Cancer

Recently I had the privilege of speaking to a colleague and catching up on  a former project we had collaborated on regarding Multidisciplinary Care, or MDC’s for oncology service lines. During the conversation we got on the topic of Nurse Navigators and Care Coordination in Oncology/Cancer Care.
During our discussion, we touched on some of the variations of the nurse navigators amongst the 30-45 programs. My colleague has a ton of experience, and she was an instrumental member of the National Cancer Institute’s-National Community Cancer Centers Program (NCI-NCCCP) that helped to assess and drive adoption of navigator programs.
One item we brought up is the role of a navigator. I told her that “navigation” is the ability to plot and control the course of a patient during their journey. She said that she liked that definition. She agreed. I then asked a follow up question, “So if a navigator has the basic job function of helping patients move from one point to the next in a highly fragmented healthcare system, why do they do so many other tasks?”
Which made me think about this post. There is a wonderful tool that was established through grant work and research (totaling of $3.4M via NIH and $25M from NCI) by the NCI-NCCCP programs called the NCCCP Navigator Assessment. (Click here for tool) As you can see it has the entire framework for a navigation program. It includes a ranking system to see where your current program is today, and then provides you with a roadmap as to where you may want to go with your program over the next few months and years.
As you can see in the tool it lays out topics such as the key stakeholders, working with community partners, improvements of the program, assessment tools for patients during their care, to the number of patients having access to care coordination and marketing of the navigation program.
Which makes me pause and challenge the status quo, are nurses the right specialty to perform the tasks of a navigator?
Please, do not mistake my question as a knock on nurses. I think nurses are wonderful, I have seen many nurse navigation programs that are doing magnificent things for patients and their families. However, are nurses the right people for the job?
1. There is nothing on the NCCCP Assessment tool that forces a nurse to perform the duties and roles of a navigator, other than the fact that they have historically performed these duties.
2. In my own experience, both professionally in building programs as well as collaborating on improving programs, I have seen that nurse navigators become the stop gap for everything. Nurses by their nature want to care for patients. This is not a bad thing, but at times it means that they are dealing with side effect management, medication assistance, or wound dressings versus helping patients get from one spot to the next. I have seen physicians throw their hands up and say that the nurse navigator can deal with it, because they are too busy, or pulled in many other directions. Again, this is not a bad thing, but is it the right thing?
3. If a navigator is to help patients and family members learn how to move inside a fragmented world of healthcare, connect with the various physicians and teams of specialist caring for them; helping to educate and leverage the supportive resources within the healthcare system and their communities, is there another member that already knows how to do this?
4. If a patient defines a navigator as a friend, confidant, a resource, and a person to guide them during their journey inside this new world, and to connect them with the right resources, who already does this?
This is where my challenge comes. Perhaps nurses are not the only solution. Perhaps social workers are another group of individuals that are equipped and may already be trained in performing the above functions.
I know I developed a program that used social workers instead of nurses. My premise was to ask patients what they defined a navigators role and job function to be, what they expected a navigator to do for them while they were being cared for, and then made my own “geeks” to those definitions.
In “geekingcare” of traditional nurse navigation programs and models, I placed social workers in these coveted roles. Social workers acted as the ‘cruise directors’ for patients and their families during their journey through cancer.
Upon a cancer diagnosis, we worked diligently to have results copied and sent to social workers as well as the Primary Care Physicians, Radiologists, and Medical/Radiation Oncologists. Once the physician had the conversation with the patient, the social worker was notified. (physicians delivering the news would also inform patients that someone would be calling in follow up)
The social worker, or cancer coach, would then call the patient. They would introduce themselves, let them know about their role and service, and to help begin to guide them through this difficult time.
The cancer coaches did a wonderful job in understanding the needs of the patient, the patients family, as well as the additional work/life difficulties that were impacted due to the diagnosis of cancer. They worked hard to ensure that appointments and care was coordinated in the number of appointments that met the needs of the patient and their families.
The cancer coaches were also well established within the community, so being able to connect with additional resources within the community to help patients and their families was critical.
As with most navigation programs, as patients encountered issues, they would call the cancer coaches. Where we differed, is that cancer coaches would place the patient back into the right hands of the care team based on the issues or concerns that the patient was experiencing. So again, it came down to listening, understanding the patient problem or concern, and then connecting them to the appropriate care team to provide the right information and help.
The coach program also met each patient as soon as they walked into the lobby for the first appointment, gave a tour, and provided them with a written summary of the diagnosis, studies, and the treatment recommendations that were made during their consultation. This was done to ensure that patients had something to reference (since 80% of what is spoken during consults are forgotten after being told you have cancer) and if they wanted to go for a 2nd opinion, that they had our recommendations in hand.
The other best practice that the cancer coach program was able to achieve was to bring in the discussion around Palliative Care, Hospice Care, and End of Life topics at the beginning of care. I know traditionally that these topics are difficult to have with patients and family members. I have seen in many organizations that this is reserved as a last resort, or after several treatment regimens have been tried, or when pain becomes an issue for patients. The social workers were well equipped to have this discussion, to make it part of the introduction to care, and to continue to ensure that the conversations were occurring, wishes were being documented, and that the entire multitude of care teams listened to what patients wanted and delivered on those expectations.
We were able to perform some cool “geekingcare” aspects and establish an internal process that allowed us to promise each cancer patient a cancer coach, and that they would go from a diagnosis to a treatment plan within 3 days or less.
In the end, it may not matter whether a nurse or social worker performs the tasks of a navigator. What matters most is that the person in the role has the ability and power to first stop and listen, define the patients expectations, and then to force the care teams to work in a coordinated effort around the patient and their families.
This is just another example of “geekingcare” in a fragmented word of healthcare that works for patients and their families.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM

#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling
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