Written by: Dr. Kathy Gennuso

Would you feel safe traveling to a place where you know your rights are not going to be protected? At some destinations, your rights may neither be known, nor understood, nor respected, so there could be no expectations that those who live there will protect your rights or worry about keeping you safe. You may choose to take that risk as a tourist on an exotic vacation, but are you as willing to do so as a patient in a healthcare system?

My name is Dr. Kathy Gennuso. Thanks for signing on. I am CEO of the Institute of Consultative Bioethics. I worked in several industries in the midst of cultural change. All industries believe themselves to be unique, and indeed they are distinct, but lessons learned do translate. In a sense I consider myself a change agent – not just helping folks get through change, but actually creating the change, in some cases, usually through focused, purposeful, seamless, automation – not through chaos, but through a systematic approach to the organization’s problems at hand. For example, part of implementing a successful EHR system is educating the field on how to integrate the technology to fulfill the original purpose that the technology was meant to improve, such as using the EHR to become familiar with the patient’s history before interacting with the patient, and not trying to key data into the system at the same time.

Or
How about the new concern involving alarm fatigue? – That can really impact clinician performance and distress patients. There is a difference between using technology successfully as a tool for the user, versus adding difficulty to an already complex process.

In most situations throughout my career two things were necessary to accomplish successful change. First, the focus needed to stay on the end consumer, which in healthcare is the patient. The second ingredient is an effective communication plan that is executed, because typically it’s not the technology that grounds an endeavor, but the human factors, undoubtedly including an unwillingness to adapt to the automation. But when done correctly, technology is the tool that allows information to flow through a knowledge organization.

As individuals have limitations with their memory, so do organizations that do not use automation for consistency, auditability, and measurement – to improve communication, reduce exposure, and mitigate risk. Simply put, efficient automation extends and amplifies an organization’s memory by capturing, organizing, disseminating, and reusing the knowledge created by its employees. Obviously the goal is not just a vehicle for accumulating and preserving information; greater value is achieved via sharing and extending that knowledge across the organization. As knowledge is made explicit and managed, it augments the organizational culture, thereby providing a basis for communication and learning.

During my clinical rotation for my doctoral education, six years ago, I realized there was a disconnect between the patient and the healthcare system: far too often patients’ rights were not being respected, especially the rights that patients had to exercise to provide input into their care and treatment – what they were being afforded was not always matching what the law required. Clinicians were, at times, making decisions based on what the clinicians’ beliefs were versus patients’ values, organizational policy, or in some cases the law. This is obviously not patient-directed care focused on safety and protecting patient rights. It was not that clinicians were purposefully ignoring the right thing to do – they were at times ill informed.

It was at this point the light bulb came on. Those who had this knowledge (which by the way you could only get from completing an advanced degree in ethics) were not typically employed in the organization because it was not a billable service. Therefore, facilities might attempt a campaign to draw attention but providing consistent patient-directed care really depended on who taught or mentored and on the culture of the organization, versus, the law or individual policies.

I believed I had a way to address this problem; therefore, I founded ICBioethics to provide a way for organizations to solve this dilemma and gain a foundation to transform their organizations into organizations with a culture that promotes patient safety and affirms patients’ rights, which can be modeled, communicated, and reinforced by using the right approach. The importance of these three critical activities, modeling, communicating, and reinforcing, cannot be discounted.

Early in 2016, the U. S. Government Accountability Office released a report on patient safety saying, “Some hospital officials indicated that they introduced extensive training for hospital staff on the elements necessary for a strong patient safety culture. These elements include empowering staff at all levels to speak up about potential patient safety concerns, such as observed deviations from established patient safety practices, and setting an expectation that managers and staff respond positively to those concerns. Hospital officials noted that they model and reinforce these expectations on an ongoing basis and also monitor staff engagement on patient safety issues through staff surveys.”

Now I know that you inherently understand this . . . . I believe that all of you listening are genuinely committed to having safer organizations – I am just suggesting that the commitment to patient safety needs to begin with patient-directed care – that is, care driven by the patients’ beliefs, goals and values and a willingness to know and safeguard patients’ rights.

So, what does it look and feel like to enter a culture that focuses on patient-directed care? It probably depends on who you ask . . . .
If you ask a clinician – it would be from the medical perspective. For example, “It would feel very professional with accurate medical terms and acronyms and you would see that all clinicians’ focus is on patients having the best medical treatment and outcomes.”
If you ask an administrator – it would be from the view of the organization, consisting of completing quality measures and tracking how many discharges or re-admissions. “It may feel very efficient and administration is making sure that those patient survey results are indeed satisfactory.”
If you ask a patient – before being a patient, he or she might not have much of an opinion, but after becoming a patient, that individual might say something like, “I would feel safe, heard and respected, and all of my experiences would start with my preferences, from little things like the food to the big things like which treatment I would like to pursue for my given condition – after having everything such as all benefits and risks explained to me, to my satisfaction, of course.”

The patient’s perspective went from physical safety to being heard and respected. “Did the clinician ignore me, did he answer my questions, allow me to be an active participant in my medical care or was I made to feel like I better just go along with the program?” It’s the old saying they may not remember what you said, but they will remember how it made them feel . . . and research is showing that patients are feeling alienated by clinical staff during hospital stays. This is concerning because lack of respect is showing a direct correlation to medical errors. We will come back to that point in a minute, but first let’s take a moment to consider some of the basic details of the evolution of the patient rights movement.

Patient rights protection is not new, of course; in fact, laws protecting the rights of patients go back to the beginning of the twentieth century but interest resurfaces often, like in 1990 with the Patient Self-Determination Act (PSDA), which is a federal law, and compliance is mandatory.

It is the purpose of this Act to ensure that a patient’s right to self-determination in health care decisions be communicated and protected. Through advance directives – the living will and the durable power of attorney – patients would more easily continue to control decisions affecting their health care throughout their lives.

However, even though society and the law were fairly quick to recognize the rights, the medical community was slower to respond. There are many complex reasons for this, but through the effects of the ACA it seems attention is finally beginning to be placed on how the entity informs and encourages patients to exercise their rights, as can be seen in the increase of patient satisfaction surveys such as CAHPS and HCAHPS. Patient satisfaction scores have never been more public and vital to an organization’s financial success, loyalty, and accreditation. Even the smallest percentage point can make a difference in illuminating the perception of an organization’s integrity, as well as the exposure to risk.

So what is your exposure?

The first area that draws attention is in value-based reimbursement which is affected by patient satisfaction scores; also, loss of funding in any research activities dealing with patients; fines and legal fees from adverse events; loss of reputation due to poor patient satisfaction or perception; and loss of accreditation, JC or DNV GL or Magnet.

Today’s training options generally come at a high cost because when the training is done via traditional methods, it can be costly, not necessarily repeatable, and not easily customized to specific purposes and changing situations. Both the cost and lack of satisfactory training options can make it tempting to stick with the bare minimum and hope for the best. But when staff training in patient-directed care is minimal or inadequate, patients may be made to feel excluded, with little encouragement and few opportunities to participate or advocate on their own behalf.

With that in mind, it’s easy to see how the exposure then extends into patient safety. When the patient is marginalized, research indicates error rates go up. A 2014 consumer report, whose grant was provided by Gordon and Betty Moore Foundation’s Patient Care Program, of over 2600 hospitals found an alarming one in four of those surveyed said staff didn’t consistently treat them “like a person.” Further, about one third felt their wishes weren’t always honored and staff didn’t always listen to them without interrupting; and 21 percent felt outright discriminated against, according to the report.

Research beginning as early as 1998, and then again seen in the IOM 2001 report indicated that patient-centered care (described as care supported by good provider-patient communication so that patients’ needs and wants are understood and addressed and patients understand and participate in their own care) supported improvement to patients’ health and health care.

Now you may notice, the study uses the term patient-centered care, which is the most common term used thus far when discussing patient rights, values, or preferences; I am using patient-directed care, which I believe is patient-centered-care PLUS – the plus being the purposeful focus on the patient, on the patient directing his or her own care. The course of care flows outward from patients based on their intention and direction. Patients are not responsible for execution but to chart the path for themselves based on the honest, complete information provided by their healthcare team.

Studies showed that if patients perceived they were receiving patient-centered care as evidenced by the staff’s communication, demonstrated through active listening and common courtesy, there was a correlation with “better recovery from their discomfort and concern, better emotional health 2 months later, and fewer diagnostic tests and referrals” (DiMatteo, 1998; Stewart, et al., 2000; Little, et al., 2001; Anderson, 2002; Beck, et al., 2002).

Unfortunately, many barriers exist to good communication. Providers also differ in communication proficiency, including varied listening skills and their ability to disagree pleasantly with patients regarding symptoms and treatment effectiveness (Rhoades, et al., 2001). Additional influences to patient-directed and provider-patient communication exist:

• Language barriers
• Racial and ethnic differences between the patient and provider
• Effects of disabilities on patients’ health care experiences
• Providers’ cultural literacy and competency.

Improper/inadequate communication with patients can translate into patients feeling excluded dismissed, and disrespected. Dr. Lucian Leape, in a 2012 article published in Academic Medicine, stated: “Disrespectful behavior threatens organizational culture and patient safety in multiple ways. A sense of privilege and status can lead physicians to treat nurses with disrespect, creating a barrier to the open communication and feedback that are essential for safe care. A sense of autonomy can underlie resistance to following safe practices, resulting in patient harm. Absence of respect undermines the teamwork needed to improve practice. Dismissive treatment of patients impairs communication and their engagement as partners in safe care.”

But what is disrespecting patients and their rights? Well, according to Gordon and Betty Moore Foundation’s Patient Care Program, disrespect consists of clinicians using medical jargon without explanation; not introducing themselves before prodding and probing; not actively listening or responding, and not saying I’m sorry when an error or adverse event occurs.

You know you’re receiving respectful treatment when a doctor minimizes the use of medical jargon while talking to you, or at least takes the time to explain it. It’s when the staffer who walks into your hospital room introduces herself before doing anything else. It’s when you’re seen as capable of making decisions about your own care – you’re listened to without being interrupted, your questions are answered, your concerns are addressed, and your wishes honored whenever possible. It’s when members of your medical team acknowledge mistakes and recognize you as something more than an appendix, a heart attack, or a hip replacement lying in Room 102.

Therefore, the first step in understanding patient-directed care is in understanding that patients must be encouraged to ask questions and clinicians must practice active listening skills. Providers might assume they know everything about their patients and what’s best for them, but clinicians are simply unable to accurately assess patients’ perceptions of their care–what is important to them, how well clinicians are delivering care, and what factors into improvement in patient care outcomes. Shifting the emphasis from “what’s the matter” with patients to “what matters” to the patient, or, maybe better, a balance of the two is called for here. Otherwise, conflict often develops and the clinician may opt to forgo following organizational policy. Situations arise in which the established process either fails to address the need or the clinicians feel forced to act in a way that is objectionable to the patient or family.

There are many complex and confusing issues for clinicians to navigate but it needs to start with them becoming fully informed before they act and before they can help to inform patients of their rights and their options. Really obtaining informed consent – not just following the letter of the law – depends on it!

Now states have taken the federal acts affecting patient-directed care and incorporated them into their state laws. Although each state conducts and regulates differently, individual organizations must adopt and adapt their organization’s policies to fit regulations. But then these regulations must be applied, not just memorized. To do this, the effect of the regulation needs to be applied to real-world scenarios so that acting upon these protections becomes habit.

So, how does an organization get everyone on the same page, keep them there, and then refresh that page as regulations and requirements change and new issues arise? What do you do to ensure compliance and a positive patient experience when your organization is set up naturally into silos? Silo mentality is an attitude found in some organizations that occurs when several departments or groups do not want to share information or knowledge with other individuals in the same entity. Silo mentality reduces efficiency and can be a contributing factor to a failing corporate culture. It might be that silos are not conducive to facilitating feedback or organic integration.

Then how do you ensure a positive patient experience w/o feedback or integration? Electronic health records allow for patient medical information to be shared, but how do you handle organizational information, like processes, forms, procedures, and training on specific concepts? Do you have a system that visually represents the rules, regulations, guiding principles, documents, and training required to embed the mindset of continuously demonstrating and facilitating patient directed activities in your organization? If you don’t, you are wasting energy and time, two of your most precious resources. You need a support mechanism that delivers Exemplary Patient Engagement – you need

• Assurance of patient rights
• Compliance reporting
• Effective training at reduced costs
• Reduction in operating expenses
• Strategies to lessen medical management risk.

To achieve these objectives you need to have one platform where all necessary and relevant information resides, accessible to each department/location/discipline/division – or whatever structure really represents your organization.

Although each may view it differently within the system, if desired, privileged access allows for adding and updating information so that the information can be kept current, confidential, and responsive. But individual departments or groups can still have their own sole access to chosen documents or data relevant to them alone.

A good patient engagement platform creates one place where the organization knows to go to for the facts about patient-directed care. The platform requires an ability to associate information (or knowledge) as building blocks that can then be used with a series of automated tools to allow knowledge to be applied.

My approach starts with establishing the base data (all the requirements, regulations and situations) that involve patient-directed activities. So far we have identified about 330 components, but some organizations might identify others of significance to them. As we discussed, each knowledge nugget or framework consists of a definition, the patient-directed concerns and issues that may arise with this subject, legal responsibilities if any, ancillary information, and an example – a complete framework. Users may access this information either through an immediate, clinician-driven access to the information when needed or via a more formal assessment.

For example, imagine a requirement change is effective immediately for all physician assistants . . . but it only affects three out of all the states you practice in. You would make the change, onetime, in the system, which would generate an email automatically to the appropriate discipline to alert all to review the regulation change within the platform. However, if you would prefer an attestation, you would use the comprehensive assessment feature to send an email to PAs alerting them that they must take a specific lesson. If that lesson were not taken successfully by a certain time frame, an email would be sent to the supervisor and escalated if not taken care of – all automatically through the system.

And finally, a patient engagement platform should have a workflow where family consults, ethics consults, mediation, or facilitation can be done. What I mean by this is the way in which you do, for instance, an organization ethics consult or family mediation process can be defined by the engagement platform. Then this workflow process can be used for two purposes. First, for training on how to use the workflow process itself; and second, this workflow can be used real-time when you actually have a consult or mediation. You would use the tool to help you prepare for the meeting, ensure you have considered all items necessary, and allow you to track your understanding and how you foresee the facilitation. When the consult or facilitation is completed, you can include the results and then upload it into the patient EHR record. By tracking the specific information about the patient directed sessions/consults, trends could be recognized to improve the effort.

Okay, let’s take one of these components – the first one that’s required to start the initiative: Knowledge Acquisition. So the first thing you will need is a methodology. I used Cisco’s reusable learning objects or RLO methodology. Basically, through the process you are able to take a large volume of information and break it down to its smallest, discrete stand-alone unit – the RLO. These RLOs can be connected utilizing tools within the patient engagement platform. So let’s look at one important issue in the delivery of patient-directed care: withholding and withdrawing life-sustaining treatment. The Withholding and Withdrawing Life-Sustaining Treatment RLO would be related to the following RLOs: Dialysis; DNR; ANH; Killing Versus Allowing to Die; Medical Futility; and Surrogate Decision Making.

For each of these individual RLOs represented, you would have the framework we discussed. So each RLO will have associated with it many things such as these:

• Organizational policies
• State-specific regulations
• Assessments and questions (For example, what’s the most important thing you want your staff to know about this issue? It might be what the surrogate’s primary responsibility is in the process.)
• Forms
• Scenarios
• Patient decision aids
• Videos & narrations
• Best practices
• Lesson plans
• Alerts & messages.

When this patient engagement platform is completed, a clinician may look up Withholding and Withdrawing Life-sustaining Treatment, review the information, and find it’s not really withholding and withdrawing they were seeking. Instead it’s leading to the related topic Medical Futility, yet the clinician can easily see the relationship between concepts.

If and when a change occurs, such as a state requirement modification or adjustment, a change to an organization policy, or even just a change to a form becomes necessary – that modification is made once in the organization and is available for everyone who uses that RLO in any capacity. In fact, based on the way the privileges and business is set up, any changes could be made and communicated system-wide by alerts in email without any additional involvement of staff.

We were just talking about knowledge acquisition and the creation of RLOs within the platform. Now let’s talk about accessing these RLOs. Access will depend on how you intend to use them. Keep in mind they are like building blocks, which you can use throughout the organization. For example, if a process related to withholding and withdrawing life-sustaining care changed within your state or even your organization, leadership might want to send an FYI to all staff to make them aware of the change.

However, there are times when an FYI is just not enough and you require attestation to the modification. In this case, you would create a lesson and assign employees based on department/location/discipline or in ways that may only make sense to your organization. When lessons are assigned, employees are emailed an alert making them aware that this lesson is required and needs to be completed by a certain date. Supervisors could receive confirmation of both the assignment and the completion or failure to complete. Also, tracking can be set up that would send alerts to selected levels of management notifying if employees failed to take or pass lessons within a required timeframe.

CurriculumBuilder is where you relate those blocks into lessons. MyLessons is where you would take the lessons. The Logistics Center is where you would define the visual representation of your organization such as an organization chart. Or possibly, you have a different reporting structure for mentoring within disciplines; views can be defined so that RLOs can be pushed out to the right people and so that the right people have access to the right data. SimulationBuilder allows creating simulations of real-life cases through utilization of RLOs, which allows users to examine real issues thoroughly, ensuring that the subject can be applied. All of these tools are used when, and as, you need them, allowing you to build from your RLOs.

Any solution that provides exemplary patient engagement must be consistent, auditable, and measurable, but your patient engagement platform in action will depend on your goals. Culture change was high on the priority list for one national hospice provider with locations in 28 states. When an existing leader was named as the new CEO, he had a new vision. Heading a department for the past eight years, he saw firsthand how teams worked in silos that fostered competition rather than collaboration, and he was not pleased with what he called their “lack of soft skills” leading to their inability to focus on patients – which could and was compromising patients’ safety and certainly was not delivering patient-centered or patient-directed care.

To get everyone focused on the same goals, the new CEO began by updating the information technology infrastructure to create a patient engagement platform. He started by addressing the key issues facing the organization involving patients’ perceptions of the organization. By implementing a system like we discussed that was able to transparently track their progress, he could then successfully identify key performance indicators and patient quality metrics. With a few clicks of a mouse, employees could access a dashboard that shows how well a department or individual clinician was performing against these metrics. The approach began instilling a culture focused on the patient. Teams began collaborating to improve their metrics. Also, he initiated monthly reviews of a given RLO and related objects to facilitate discussions between thousands of faculty and staff about the hospital’s values and about ways to drive patient-directed care. By making the vision clear, holding people accountable, and celebrating successes, morale rose, and people became more invested in the institution.

So, you see, it’s a combination of people, process, and technology that come together in creating a culture of patient-directed care.

I want to be safe when I, or my family, go into a healthcare facility, so does everyone, so do you. I believe this approach I suggested just might be part of what is needed to provide us with the assurances we so badly want.

This may be intimidating to those who do not have an IT background, but to me it’s somewhat simple: It takes the right combination of knowledge, access, and expertise.

If you desire to create a culture of patient safety and patient-directed care, because you want your patients to be safe just as you would want to be safe, then don’t sweat the technology – just get the right team with the right expertise and technological tools – and get ‘er done!!

Patients are in your hands as they travel through your organization, trusting that your culture will not be too foreign to navigate. They trust you to afford them safe travel, to welcome and familiarize them, to know and protect their rights, and to make their stay the pleasantest and healthiest experience possible.