More Than Manners: Involving Patients and Representatives in Care Decisions

Nurse Leader Insider, April 25, 2019

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By Brian Ward

This appeared in Patient Safety Monitor Journal.

Engaging patients in their care isn’t a matter of manners. It’s crucial to ensuring the best possible outcomes, that all your information is right, and that the will of the patient is understood. Also, the government can punish you for not doing it.

So what’s the best way to keep patients informed about their care? Can a hospital override a patient’s decision? And how do you determine who the patient’s representative is if the patient is unconscious or incapable of choosing one?

How much information is enough?

According to CMS, patients have the right to make informed choices about their care and be involved in crafting their care plan. But how much information is that?

Diana Topjian, a patient safety coach with Studer Group, says that when talking to patients about their care plan, it must be clear that they understand the risks and benefits of agreeing or declining to the treatment regimen.

“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,” Topjian says.

“I believe that this is a two-part process,” adds Erin Shipley, RN, MSN, a patient safety coach with Studer Group. “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.”

Ways to get patients involved

Build trust

Thomas Dahlborg, a patient safety coach with Studer Group, says trust is important.

“It’s essential to create a safe space and a safe place for a patient to share their story,” he says. “It is also essential for the care team to leverage emotional intelligence, motivational interviewing, and attentive listening. Trust is essential for key data points to be uncovered; abuse issues, socioeconomic conditions, cultural norms, additional healing pathways, and so many others that are often missed as the care plan is created.”

Dahlborg recommends using the AIDET Plus the Promise mnemonic as a way to build trust and rapport with patients.

Bedside meetings

“[Providers should] incorporate 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,” says Topjian. “Retention is best determined through the use of teachback [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.”

Care coordination and interdisciplinary rounding

When involving all the caregivers, care coordination and interdisciplinary rounding are must-haves, says Shipley. Their purposes 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
Empower the care team to consistently and accurately anticipate discharges and maintain accurate documentation of this information

Care transition phone calls

“Care transition phone calls are also a strong strategy for the solidification of education and assessment of retention of information and teaching shared,” says Shipley. “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.”

Health literacy programs

Shipley is a big supporter of educating patients about their health even outside the hospital’s walls. Making resources available for patients outside the hospital to learn about their care has been shown to be effective in improving outcomes.

“[For example,] 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,” she says. “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 followups 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.”

There was a time commitment for this program, she admits. That said, babies from the program were healthier on average in their first six months than those whose parents didn’t get the proactive education.
“Look at community classes offered for diabetes education, joint replacement, bariatric surgeries, etc.,” Shipley says. “All of these are done in partnership with the hospital and involve community resources, which are vital to ongoing education and outcome tracking for an at-risk population.”


The only time CMS lets a provider overrule a patient’s care wishes is if the patient is deemed to lack decision-making capacity. And when this happens, decision-making responsibility is passed to the healthcare surrogate (HCS).

If you have reason to believe the HCS isn’t making the best decisions, then your facility should perform an ethics consultation. In extreme situations, a guardian-ad-litem is appointed by the courts.

“The Healthcare Surrogate Act is specific in terms of how this process works,” says Topjian. “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.”

There are situations where a crucial care decision needs to be made but the patient or the patient’s HCS aren’t available to discuss it. In the absence of any legal document (advance directive), healthcare organizations are allowed to make their best judgment.

Picking a healthcare surrogate

The laws around who is appointed the healthcare surrogate (HCS) for a patient are stringent. Unless a patient names his or her HCS, each state has its own hierarchy for deciding what family member or relation gets legal authority. Click here to see a state-by-state chart of HCS priority.

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