Progress Notes and Palliative Care: How to Approach Note Sharing in a Patient-Friendly Way

In April 2021, an important change took place in the way we communicate and coordinate care with our patients. Per the final rule of the 21st Century Cures Act (“Cures Act”), sharing clinical notes with patients is now a requirement.

While this is important for many reasons, engaging patients and their families to be more active in their care is paramount. Note sharing—specifically open progress notes—may help clinicians, patients, and families improve care with more open communication and partnership. In fact, studies looking at clinician and patient experience with open progress notes resulted in overwhelmingly positive attitudes and experiences for both groups.

Open, transparent communication is a good thing, right? Absolutely – when patients have information, they can make informed decisions, and transparency can strengthen patient-clinician relationships. As we treat and care for people living with a serious illness, it is important to offer full transparency for their care. This blog post dives into the details of the Cures Act, with particular focus on open progress notes—including how it affects day-to-day practice for palliative care clinicians, and tips for documentation.

Providing patients with access to their health information has been an evolution. In 1996, one of the requirements under the Health Insurance Portability and Accountability Act (HIPAA) gave patients the right to request and receive copies of their medical records, and suggest corrections be made, if the record was inaccurate. However, accessing this information was not easy; it required that patients complete numerous forms (usually with an associated fee), and go into an office or receive copies via fax. Then, in 2008, the Health Information Technology for Economic and Clinical Health (HITECH) Act required health systems and clinicians to use electronic health records (EHRs) with patient portals, laying the groundwork for an increase in health information sharing among clinicians and patients.

Fast-forward to today: the final rule of the Cures Act requires that clinical notes are included in electronic information shared with patients through secure, online patient portals. According the U.S. Department of Health & Human Services, this access must include eight types of clinical notes (detailed in the next section), and be free for patients. If an organization does not follow the guidelines set forth, they could be charged with “information blocking,” which comes with a $1 million fine per occurrence.

While health systems around the country have been gearing up for this change for many years, this is the first time that progress notes are required to be shared with patients. Until now, each hospital, health system, or medical group has created their own rules regarding what information may be shared with patients, and when. For example, Hospital A may have shared imaging narratives, but not progress notes, while Hospital B may have shared progress notes, but not procedure notes. Now, patients have access to the same information, no matter where they receive care.

The Cures Act Final Rule requires the sharing of eight types of clinical notes with patients:

• Progress notes (which is the main focus of this blog)
• Consultation notes
• Discharge summary notes
• History and physical
• Imaging narratives
• Laboratory report narratives
• Pathology report narratives
• Procedure notes

The Veterans Health Administration (VA health care system) has embraced sharing progress notes since 2013. Because of this shared access, numerous studies have shown that patients are more active in their care, and more prepared during visits. Given that the VA has almost ten years of experience, this presents learning opportunities for the rest of us.

In the Clinical Practice Guidelines for Quality Palliative Care, 4th edition (“NCP Guidelines”), communication is emphasized as essential for quality care. That is, communication among the palliative care team, patients and families, other clinicians, and community support resources. With communication being a prerequisite for the delivery of high-quality care, palliative care teams should embrace this new rule and be champions for information sharing – specifically progress notes.

Studies exploring the benefits of sharing progress notes show improved communication, patient engagement, patient outcomes, and opportunities for patients to participate in the safety of their own care, as well as greater confidence in their care with accurate documentation. Also, a majority of patients reported wanting continued access, as viewing progress notes helped with adherence to their treatment plans, coupled with feeling that they were more in control, better prepared, and receiving better care.

Concerns about open progress notes have been studied numerous times at many sites around the country, including: time spent responding to patient corrections; patients becoming upset or angry due to note content and phrasing; patient confusion; and increased malpractice liability. These factors were examined and showed to not have any significant negative impact.

Documentation concerns exist as well. Will clinicians spend more time documenting? Will notes be less accurate? Will this requirement affect the progress note as a billing instrument? How will sensitive topics, such as prognostication and advance care planning, be handled? These concerns are real but manageable. In a recent survey of clinicians with at least one year of experience sharing progress notes, 74% believed having open progress notes is a “good idea”, and viewed sharing notes as useful for engaging patients in their care. The overall positivity toward open progress notes from both clinicians and patients can guide us in the months and years ahead.

Communication is essential for quality care, especially as it pertains to people living with a serious illness. Since communication is at the core of high-quality palliative care, clinicians caring for people with a serious illness can be exemplars for others. Let’s look at some additional communication and documentation tips that will be helpful:

Progress notes should reflect the content of your visit with the patient/family, so information is available to the patient/family, other providers, and you (the clinician) in the future. Experts at OpenNotes—a not-for-profit at Beth Israel Deaconess Medical Center and Harvard Medical School—recommends to clinicians: “Write what you say, say what you write.”

This means there should not be disagreements or tensions amongst clinicians played out in notes (e.g., do not write, “I suggested X, but the oncologist says Y.”) Recognize that your patients are also readers of the notes, so you may find yourself tweaking your documentation style accordingly.

Accurate notes have shown to improve patient satisfaction and outcomes.

You have provided your recommendations and education; now they can read that essential information in the “plan” section of your note, too.

Encouraging patients to login to the portal, or printing out the note and handing it or mailing it to them, is a helpful collaborative gesture. This encourages engagement and opens the door for any needed corrections. You want to ensure that ACP notes reflect their wishes accurately, and the document itself may be empowering to them as they face the continued uncertainty of their serious illness.

Additionally, you can encourage your patients to share their notes with their family caregiver(s), through shared access to the online patient portal (sometimes referred to as “proxy access”). This shared portal access has allowed for more productive discussions and a higher-degree of understanding about the patient’s care.

For example, instead of “obese”, use “BMI”; instead of “complains of”, use “reports”; and instead of “noncompliant”, describe what they did or did not do (e.g., self-adjusted or discontinued a medication). The goal is to minimize judgement and decrease the chance of provoking argument or misunderstanding. For instance, instead of “patient didn’t want to continue meds”, document the full picture: "Patient discontinued medication because of the high cost, and because s/he could not get a ride to the pharmacy”. This adds context, ultimately helping to paint a picture of the true situation, which may help shape future conversations with other clinicians.

If information is readily available elsewhere in the chart (e.g., demographics), there is no need to repeat it in your note, unless it influences your differential diagnosis or plan. If a particular aspect of the history is documented in another person’s note (e.g., the oncologic history), refer to that note specifically instead of reiterating it.

While the above documentation tips apply to progress notes, the final rule also includes open clinical notes such as pathology report narratives, imaging narratives, and laboratory report narratives. Given the nature of palliative care, we suggest that you:

This means the patient may receive the results in their patient portal before you see them in the EHR. If the test may yield potentially sensitive information (e.g., the progression of a cancer), let your patient know they don’t have to look at their tests online—they can wait for you to contact them with the results, once you have received and reviewed them yourself.

For more helpful resources about documenting in an open progress note environment visit opennotes.org.