Sharing Palliative Care Notes
Open notes is not a new concept, but important questions remain: How should clinicians who care for those facing serious illness document more sensitive topics such as prognosis, denial, and interfamily dynamics… when they know patients may be reading their notes? And how and when should thoughts about advance care planning and Physician Orders for Life-Sustaining Treatment (POLST) be included in the documentation?
In this webinar, Christian Sinclair, MD, FAAHPM —an early adopter of sharing palliative care notes—shares his lived experience as a palliative care physician sharing notes, observations about documenting sensitive topics, and electronic health record tricks and tips for sharing notes with patients.
- Bonus Q&A
- Download slides from the the presentation (PDF)
- Tips: Suggestions for implementing open notes in clinical practice (PDF)
- Link to common medical abbreviations (Medline Plus)
About the presenter
Dr. Christian Sinclair is an Associate Professor in the Division of Palliative Medicine at the University of Kansas Health System, focused on leading outpatient palliative care in the KU Cancer Center. He has clinical experience with all the different venues of hospice and palliative care through his past work with Kansas City Hospice and Palliative Care, in addition to his past leadership roles as a fellowship director, and National Hospice Medical Director with Gentiva. His early rise in the field of palliative medicine was in part due to his writing for the website Pallimed, where he now serves as Editor-in-Chief. In 2018, he was named the first Associate Editor of Social Media for the Journal of Pain and Symptom Management. He served nine years on the board of the American Academy of Hospice and Palliative Medicine and is a past president of the American Academy of Hospice and Palliative Medicine.
Full Webinar (1 hr, 1 min)
Background & Intro to Topic (9 min)
Sharing Palliative Care Notes, Christian Sinclair, MD, FAAHPM (37 min)
Q&A with Dr. Christian Sinclair (13 min)
Open palliative care notes Q&A
The following questions were answered by Christian Sinclair, MD, FAAHPM.
Do patients have access to Orders, i.e., the requests for care from a particular type of care provider? Will patients have access to the Orders placed by care providers, which are addressed to other care providers? As a chaplain I may hear patient’s viewpoint and experiences, and sometimes feel it is important to bring in a social worker or child life specialist through Orders. Are patients able to read the Orders?
Great questions. This is dependent on how your EHR is setup within one’s own system. It may be good for your team to meet with your EHR colleagues, to take a tour on how the chart looks like from the patient perspective. On our team, I know people have been willing to share what they learned when they are also a patient in the same system.
We care for patients and families; there are often many dynamics and important information/perspectives that vary between patients/family members, etc. I’m thinking particularly about differences between patient and family perception on situation and information preferences or different opinions (e.g., patient won’t talk anything about end of life, but the family willing is. We get good info [from the family]; should we document this information?
This is tough and I expect that we will all find different ways to solve this issue, and when we do we should share them within our teams and outside our organizations. Yet for today, I like to recognize that the note now is a communication tool to my patient, and there may be things to put in the note that are constructive and may help advance difficult conversations, such as, “Noted tension between parents when discussing risk of their child dying. They have different requests for amount of info. Will work with them to find good balance and get key information to make decisions, even if difficult to hear.” Yes, a little wordy, but may capture the issue without pointing fingers. Also, it helps to highlight that you may document difficult topics in the chart and get feedback on how the patient/caregiver/family may feel about that.
Is there a strategy that you would recommend in regards to how to use open notes in relationship to things like an After Visit Summary or patient instructions? I’m trying to understand how this should/might influence how you write an assessment and plan (e.g., my A&P might say “Start Tylenol 1000mg TID” but for my patient I would probably write “Consider starting Acetaminophen (Tylenol) 1000mg three times a day for pain”). Do you still use things like patient instructions at all or just ask people to look at their notes?
This may not work for all, but we have a clear area in the EHR (EPIC) and in printouts for patient instructions, and have started to make sure to direct patients to that area for specific instructions. We may need to be more explicit about how the physician notes may also include information that is for the future or for thinking through writing down, and to reach out if they have questions or see things that conflict.
You mentioned using AI in the slides for interpreting the notes. Would you elaborate more on this topic? How it will be used?
This is a bit more in the research only space, and looking into the future. There have been some studies and opinion pieces about this, and a few companies [who are working on this]. Some are using AI to scan the notes for coding help, or to create a layperson version of the notes.
If a patient is not decisional but doesn’t have a power of attorney, who can access the notes?
This is very EHR dependent. Some EHRs have customizable proxy access, some do not. [You should] also consider if someone has ‘shared their password’ to login.
We see a fair number of patients where decision-making capacity is being questioned. Recognizing this is a spectrum, how are geriatricians and others documenting on capacity assessment/recommendations?
When I am formally assessing decision making capacity, I usually try to make sure I tell patients [that I am making this assessment], so that helps me document open and fair. The more subtle documentation where a clinician may be concerned is a little trickier, but I think as best as possible, sticking to the facts and what you are observing with neutral, professional language is the best way to go.
Often we hear reports in hospice of family members/caregivers who have a history of substance use disorder (SUD)… [which is] relevant for concerns of medication diversion… [This] might now cause issues to chart, as it is often whispered to us.
Such a tricky situation. This may be a place for limited information enough to describe the situation in the patient notes, and using other forms of communication to help other team members best navigate that situation. Remember the patient’s notes does not have to do ALL the lifting of our communication.
How are you handling documentation (i.e., how are you writing in the chart) around patients (and parents in pediatrics) who have a poor understanding of the disease or prognosis?
Hopefully these are rare situations, but we know they happen. I try to lean more towards what we are doing to help them get a full picture. So instead of ‘parents not wanting to accept that son is dying’ or something in that tone, [you] could use something more like the I worry statements.
‘Shared medical update including progressive illness and indirect discussions around possible end of life. This topic was hard for parents, I’m hopeful we can discuss more to help them in this tough situation.’
Do you change your note based on the patient’s feedback?
I have only three times in the past two years, two were for a desire to avoid reading prognostic statements when they were not prepared, one was for a simple number mix-up the patient did not want perpetuated. And that is with thousands of notes shared.
If we are asking too much of notes to communicate with other care team members, where/how do you suggest that communication occurs?
Yes, we need to make sure notes do what they need to do for our teams/organizations. And recognize there are other communication tools that can serve to help us care for patients best. In the past it was a folded-up piece of paper, now it may be electronic. A lot of it depends on your EHR, and of course always be cautious with tech and HIPAA/security concerns. In EPIC we use the specialty comments, sticky note and flags. I am not sure if the flags are visible to the patient. That may be something to check.
What about chaplains? Any advice?
Always document factually with neutral and professional language. Recognize that you can still help patients with what you write. Celebrate their strengths, share your worries, help them see you are on their team. And most of all, proactively solicit feedback from patients. Don’t forget to share and talk with other chaplains about best practices. (And then write an article!)
Asking for a friend: As a mental health consultant in [hospice and palliative medicine], I am called for issues related to inner/outer conflict, and I often uncover sensitive historical material such as mental illness, trauma, or criminal activity. This information is important for communicating to the team. How or should I document this?
Systems have solutions for sensitive notes, so there is usually a way to mark a note as “private,” but I would encourage that for unusual circumstances, knowing that patients will be able to get that information through request of records anyway.
[A] best practice is to find the least amount of language to share the most relevant information. If it is documentation in order to protect a patient and begin to lay down ground work or more interventions, you may need to document more. If it is only needed to be known in the abstract, it is ok to summarize without details. Something as simple as ‘history of ACE, PTSD related to health care’ may be enough. In other situations you may need to write ‘had abusive experience with health care professional which violated trust, and therefore need to be considerate and support preference to have family member with them at all visits.’
I am concerned about the adolescent issue. What will be the access of parents? Adolescents deserve a safe space in their clinical encounters.
Systems will approach this differently, so reach out and find out who is talking about this at your organization. Also, pull on the literature that already exists around confidentiality, ethics of access in adolescent medicine.
Ultimately, who is the audience/receiver of the note? That seems the most challenging…
Multiple people. Design your note templates with multiple audiences in mind, working towards something that balances information with efficiency.
Are clinicians still leaving their contact information at the bottom of their notes that typically has been available for other clinicians to reach us?
I took mine off from my phone and email, to just saying I am available by Voalte/Pager system.
What differences might we expect between hospital notes vs. clinic notes; thinking in terms of a longer hospitalization with a large volume of notes?
There is room for a lot of efficiency especially with the 2021 rules for ambulatory notes moving more away from chart bloat. Look those up if you have not heard about them or talk to your coding and billing expert.
If patients are following their notes, how would you address someone asking about why a “sensitive” note is not available?
Not sure, as I have not encountered this yet. I think being open about the issue, and having the patient help you find the best solution.
I think patients having the right to “read” their notes is a good practice. My question is we know people other than the patient will be reading the notes, may not be their documents durable power of attorney (DPOA), yet they now have access to medical records. Do we acknowledge their questions or defer since they’re not the “legal” DPOA?
This will be difficult to monitor, so I am not sure there is much we can do, outside of education around proxy access versus patient access if your EHR allows it, and in situations where you know the DPOA is changing or there is not relationship strife that might endanger the patient, then encouraging them to make changes to the access to their online medical records.
Is there a toolkit for Spiritual Care/Chaplains for documentation with Spiritual Assessments/Inventions on the palliative care team?
Not yet, that I know of, so a perfect time to wrap up some best practices and work with OpenNotes to make one!
What percentage of notes do you end up designating as “sensitive?”
I have not done that. I work to get access for all my notes.
Are communications to other providers open for patients to see through the EHR?
[This is] probably EHR dependent. I have seen some providers put my communications to them in their notes, and I have had to talk with them that I did not think that was a good idea. Awkward at first but ultimately a good conversation.
Is there a recommended turnaround time to respond to patient inquiries?
For non-urgent issues, I would aim for 2-3 business days as a maximum time. Would be good to set expectations with template language so your patients know what to expect.
Are physician-to-physician notes in an EHR typically also viewable by patients? If so, are people essentially improvising a “shadow EHR” by less secure and less HIPAA-compliant means like email, in order to convey the story that they now don’t feel they can write in the unsecured EHR?
I don’t think we should make a shadow EHR. But I do think we can look to other tools and aspects of the EHR to adequately convey sensitive information that is essential for the team to function.
Is there concern with making notes sensitive for the legal fine implications of not sharing all notes? I worry about cases where there is suspected abuse and a report to APS or CPS needs to be made.
Valid concern. I am not sure where the law will fall on this. I would say more, but it would really be without experience or insight. So, I will be humble and quiet.
It sounds like with shared notes it will require clinicians to spend more energy and time to be cautious about documentation, as well increased non-documented communication amongst clinicians. In an era where productivity is measured and time is limited, are there considerations about how open notes may impact clinical productivity?
At first, for sure, there may be time for adjustment, but I found I quickly fell into new habits and lingo. Studies that have looked at extra time on the phone or documenting because of open notes has not born out a significant change long-term.
Are the notes the best tool for patients? It can’t be an audience for everyone.
It does represent information and decisions around their health. Maybe we can work towards a simple efficient way to capture the key info in the medical note for a broader patient audience that is inclusive of different levels of health literacy. I expect work will be moving forward on that in the future.
General open notes Q&A
The following questions were answered collectively by Liz Salmi (Senior Strategist, OpenNotes) and Cait DesRoches, DrPH (Executive Director, OpenNotes).
Can patients see past notes prior to open notes? i.e. when “monitored” in the past?
Most health systems are choosing to share notes through the online portal from the “go live” open notes date and forward. In other words, retroactive notes are likely to not be shared. Some organizations are choosing to share retroactive notes. Check with your organization’s health information management (HIM) department to better understand your policy. Remember: Patients can always go through a traditional medical records request process to view all historic notes.
We work in a hospital. My understanding is patients will receive a copy of chart notes. Are you talking about patients seeing notes in real time?
Ambulatory care notes will be available to view after they are signed off on by a clinician. Inpatient notes may vary a bit by organization. For example, we’ve heard some organizations are releasing the inpatient notes to the portal at the end of the day, while others are sharing the notes to the portal as soon as each note is signed off. We may learn in the coming months that all of these detailed notes become an information burden for patients/families, and organizations may switch to a daily update.
Do you happen to know if the new [Information Blocking] rules apply to home health and hospice in the outpatient setting?
Yes, the Information Blocking Rule applies to all healthcare organizations using electronic health records.
Does [the Information Blocking Rule] apply to inpatient notes or just outpatient notes?
The Information Blocking Rule applies to inpatient and outpatient settings.
How many patients use open notes? Does talking about it with patients increase their chances of reading notes?
Talking about open notes does increase the chance a patient will read a note.
The percent of notes read by patients varies by organization. Health systems that have high note “open rates” are typically institutions that promote the availability of notes on the portal (e.g., place buttons on the homepage of the portal, send email reminders, have clinicians who are excited about sharing notes and urge their patients to read notes). Organizations that take all of these steps may see read rates in the 20-30% range. Organizations that “flip the switch” to share notes to portals, but take no other steps to encourage patients to read the notes or use them as a tool may see note “open rates” in the 1-2% range. (Check out this white paper for details.)
Clinicians concerned about a massive influx of patient readers can do a little math. Say you see 400 patients in 1 month. If your health system has 40% of its patients registered for online portals, at most 160 of your patients could access the note. If your organization doesn’t do much to promote access to the note, at most about 10% of those patients may open a note, which means just 16 of your patients may read a note each month.
Our institution uses Epic which has some notes that you have to “break the glass” to read, primarily mental health notes. Are patients able to see those notes?
I would ask your health information management (HIM) department about how they are handling this specific situation. Details like this may vary by institution and state.
Are social worker notes going to be “open” as well?
Do patients receiving palliative care view/access their notes more or less than non-palliative care patients?
We don’t know yet the answer to this question as open palliative care notes have never been studied. We do know that people who receive more frequent care (e.g., cancer) have more visits and more notes, and if they are registered for a patient portal, they may be more likely to read more notes in an average year. We work with many institutions, and cancer centers sharing notes with their patients have a high note “open rate” on the patient portal. We are aware some people give their portal logins to loved ones (as opposed to going through the more formal proxy access process). If someone is ill or very sick, there is a chance the person viewing the portal information may also be a care partner/family member.
For patients with English as second language, is there a in-built option to translate the notes? Maybe into popular languages, e.g., Spanish? Related to that, can patients leave comments in other languages but English?
Answering the last question first: Most online patient portals do include features to message the medical team, and a patient may choose to write in a language other than English. We have no data on how many providers respond in languages other than English.
Most electronic health record vendors build their platforms in English. Some organizations have implemented Spanish-language facing portals, but the notes are still in the clinician’s words, and in the U.S. notes must be written in English.
There have been a handful of studies looking into using translation tools and AI for clinical notes. As of this moment we haven’t read of any tool/study that is accurate enough for a health system to stand behind.
That said, multiple studies on open notes have shown patients are likely to share a note with “someone else,” which includes a family member. Non-native English speakers commonly share their note with another family member more fluent in English to help them better understand the clinical note.
Has there been any research on how often clinicians omit information from their notes that they feel may be important for patient/family safety, when they feel that safety would be compromised if the family members who are reading notes discover it, etc?
There have been a handful of studies about documentation post-open notes. Here’s a newly published paper in the International Journal of Medical Informatics: Perception versus reality: Does provider documentation behavior change when clinic notes are shared electronically with patients?
- A study published in the Journal of Clinical Oncology Cancer Clinical Informatics analyzed 102,135 clinical notes written by 35 hematologists/oncologists at the Beth Israel Deaconess Medical Center before and after open notes. On average, clinicians did not change their note documentation, but for some there were significant changes: roughly equal proportions of clinicians make language simpler and more complex; clinicians who were previously late to submit their note documentation began completing and signing their notes more quickly.
- A mixed methods study of 13 interviews and a random effects modeling of >500 clinical notes revealed no significant changes in oncology documentation pre- and post-implementation of open notes at VCU Medical Center (Massey Cancer Center). The interviews revealed oncologists were most concerned that their colleagues documentation might change when they know patients are reading, but this has been unfounded.
This may be an organization-specific question but how will [open notes] apply to training programs where there are fellows writing notes and supervising attendings? Will they be released only after attending review?
Ask your health information management (HIM) department on their policy.