Q&A: Patient Involvement and Representatives


  • Publication: HCPro
  • Release Date: February 1, 2018

Reproduced from Briefings on Accreditation and Quality © 2018 HCPro, Inc., 75 Sylvan Street, Danvers, MA 01923. 781/639-1872. www.hcpro.com. Used with permission.

Involving patients in their care isn’t just polite, it’s a CMS requirement. Condition of Participation (CoP) §482.13(b)(2) says that patients have the right to make informed choices about their care and be involved in crafting their care plan. And CoP §482.13(a)(1) requires hospitals to take reasonable steps to decide who the patient’s designated surrogate is when the patient is unable to make the decision.

So what’s the best way to keep patients informed about their care? What documentation does CMS require to show it was done? Can a hospital ever override a patient’s decision? And how do you determine who the patient’s representative is if the patient is unconscious or incapable of making that choice?

We asked these and other questions of three patient safety coaches at Studer Group: Diana Topjian, Thomas Dahlborg, and Erin Shipley, RN, MSN.

Q: What’s a good rule of thumb for determining what information patients need to knowto make an informed decision about their care?

Diana Topjian: I don’t know that there is a “rule of thumb,” per se. However, from an informed consent perspective, it must be clear that the patient understands the risks and benefits of both agreeing or declining to the treatment regimen. I would suggest that the patient truly needs to know all that is involved in how the provider decided upon a certain treatment to make a fully informed decision.

It’s incumbent upon us as providers to ensure we present the plan of care in such a way that the patient (and/or family) understand and clearly can follow the information we used in reaching those decisions.

Thomas Dahlborg: It’s essential the patient and the family is involved in co-creating the care pathway. However, sometimes the family is a contributing factor to adverse mental, physical, emotional, or spiritual health. Often, we default (with good intention) to a place of “engage the family.” More important is to understand the family and the dynamic and then strategically engage to best meet the patient’s needs.

Only with the patient (and again family when appropriate) actively engaged in the decision-making will key nuggets of wisdom be uncovered.

One real-world example is issues with abuse in a patient’s past leading to an unhealthy relationship with his or her body. Thus a “typical” diet and exercise approach may not meet the patient’s needs. In many cases, only when we first address the emotional and mental health will the patient be ready to get “unstuck” and be positioned to address physical health challenges. Again, we will know those when we engage the patient.

This patient engagement will also open the care path to cultural and other key areas of import. For example, is the patient also engaging in traditional healing or other complementary/alternative therapies? That’s important information to know in developing a safe and integrative co-created care path.

Erin Shipley: I also believe that this is a two-part process—not only continuing to involve the patient and family as much as possible in the planning around their plan of care, and any preferences that they have, but also assessing for any changes to these wishes, and deliberate teach-back with the patient, to ensure that the knowledge and information taught and shared has been retained.

This also helps improve the engagement of the patient to understand any perceived or actual barriers the patient and family has with following the plan developed.

Q: What are the best methods for involving and engaging patients in their care? Have there been any strategies that have been shown to improve communication and retention of healthcare information?

DT: Incorporating the patient and family (if available) during the bedside shift report (BSR), as well as writing information on patient communication boards in lay terms and reviewing them at each change of shift as part of BSR.

Retention is best determined through the use of teach-back [having patients state in their own words what they need to know or do about their health]. This can be done at both BSR and during nurse leader rounding.

TD: It’s essential to create a safe space and a safe place for a patient to share their story. It is also essential for the care team to leverage emotional intelligence, motivational interviewing, and attentive listening (listening to understand and not just to respond).

Trust is essential for key data points to be uncovered (e.g., abuse issues, socio-economic conditions, cultural norms, additional healing pathways, and so many others that are often missed as the care plan is created).

Studer’s AIDET Plus the PromiseSM mnemonic is a terrific tool in this area. As Diana noted, truly engaging the patient during BSR is so important as trust is reinforced consistently. The care team must be open to co-creating a care path with patients and not dictating what we believe is best.

ES: Care transition phone calls are also a strong strategy for the solidification of education and assessment of retention of information and teaching shared.

These calls are best done by a clinician, because he or she can tailor the questions on the patient’s primary diagnosis plus events that might cause the patient to be readmitted. We can also customize the question set depending on the engagement of the patient to further hardwire/solidify knowledge and communication.

Care coordination and interdisciplinary rounding are also must-haves when involving all caregivers engaged in a patient’s care. The purposes of these are to:

  • Improve communication between multidisciplinary care team members: physicians, advanced practice providers, nurses, case managers, social workers, and ancillary services
  • Facilitate the proactive coordination of patient care and discharge planning efforts across the entire care team and ensure the team is in agreement on goals for the day, as well as goals for the overall hospital stay
  • Identify progress toward appropriate clinical milestones and address barriers to achieving those milestones
  • Identify and address barriers to the patient’s transition or discharge process
  • Enable and empower the care team to consistently and accurately anticipate discharges and maintain accurate documentation of this information

Q: Have programs aimed at patient education/healthcare literacy outside a healthcare facility been shown to be effective? How much of a time/resource drain are said programs?

ES: I can think of a few great examples of how simple actions to provide patient and family resources outside of the home can not only be effective, but also keep patients and families engaged.

First, parents of neonatal intensive care unit (NICU) babies are provided with basic life support and CPR training prior to a child being discharged from the NICU. While the education is provided in the hospital, it’s in partnership with a local pediatrician’s office. The pediatric nursing team then rotates discharge follow-ups with these parents at a set frequency (one day; one week; every other week; then monthly for six months) to ensure that parents have the support they need.

While there is a time commitment, these babies tend to be healthier in their first six months than other NICU babies who are not followed, mostly because these parents receive proactive education on how to keep their child well.

Second, look at community classes offered for diabetes education, joint replacement, bariatric surgeries, etc.

All of these are done in partnership with the hospital and involving community resources, which are vital to ongoing education and outcome tracking for an at-risk population.

Q: What sort of documentation does CMS require in order to show a patient has been given adequate information?

DT: Typically, any credentialing body looks to ensure medication reconciliation has been done and that the patient has been given information regarding care at home (which includes medication and side effects). Checking the CMS or Joint Commission website will provide specifics, although typically agencies give a general expectation, not detailed specifics.

Q: When (if ever) are providers allowed to overrule a patient or representative’s wishes regarding care?

DT: Usually, this only occurs in instances when the patient is deemed to lack decision-making capacity. This then puts the healthcare surrogate (HCS) in the position of decision-making.

If it’s perceived that the HCS isn’t making the best decisions, many organizations will call an ethics consultation. In extreme situations, a guardian ad litem is appointed by the courts.

Q: What sort of documentation (if any) is needed to show that someone is a patient’s representative? For example, if a man brings an elderly woman with dementia to the hospital and says he’s her grandson and representative, then what does the hospital need to do to validate this?

DT: The Healthcare Surrogate Act is specific in terms of how this process works. Ideally there would be documentation that the individual with the patient is the patient’s HCS based on the patient’s preference.

In the absence of a formalized HCS, then there is an algorithm, so to speak, as to what order to go in to obtain decisions from. Validation of the family member or HCS is done at the time of admission.

[Click here to see the priority of surrogates broken down by state.]

Q: What happens if a crucial care decision needs to be made but the patient’s representative isn’t available to discuss it?

DT: Typically, in the absence of any legal document (advance directive), healthcare organizations will err on the side of treatment.

Q: When more than one individual claims to be the patient’s representative (and the individual is unable to weigh in), how does the hospital determine who the representative should be? Is there an organizational chart?

DT: Same as noted above. If there’s no legal documentation and no advance directives on record or available, and there is a discrepancy in terms of what the individuals desire as care for the patient, an ethics consultation occurs to assist with the decision-making process.

Diana Topjian, RN, MSN, DM, C-ENP has more than 30 years of experience ranging from direct line staff nurse to executive leadership roles in both academic and community-based hospitals.

Thomas Dahlborg, MSHSM has more than 30 years of leadership experience with a focus on patient engagement, research, quality improvement and innovation. He is often sought as an advisor for creating Patient and Family Advisory Councils (PFACs), improving patient engagement and delivering compassionate care.

Erin Shipley, RN, MSN has more than 15 years of leadership experience as a clinical nurse manager and service line administrator. Erin’s passion, entrepreneurial spirit and professional drive set the stage for a continued push towards operational excellence.

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