Institutional challenges and solutions to evidence-based, patient-centered practice: Implementing ICU diaries at 2 U.S. sites

Abstract

Background:

Although diaries are an evidence-based practice that improves the quality of life of patients in an intensive care unit and their loved ones, centers in the United States are struggling to successfully implement diary programs in intensive care units. Currently, few published recommendations address how to facilitate implementation of a diary program, and how to effectively sustain it, in an intensive care unit.

Objectives:

To discuss challenges with implementing diary programs in intensive care units at 2 institutions in the United States, and to identify solutions that were operationalized to overcome these perceived difficulties.

Methods:

The teams from the 2 institutions identified local barriers to implementing diaries in their intensive care units. Both groups developed standard operating procedures that outlined the execution and evaluation phases of their implementation projects.

Results:

Barriers to implementation include liability and patient privacy, diary program development, and implementation and sustainability concerns. Various strategies can help maintain clinical and family member engagement.

Conclusion:

Through a team’s sustained dedication and a diligent assessment of perceived obstacles, a diary program can indeed be implemented within an intensive care unit.

Background

Post intensive care syndrome (PICS) is a constellation of symptoms that includes cognitive, psychological, and physical impairments and is gaining recognition as the number of survivors of critical illness continues to grow.^1–2 Given the relatively recent identification of PICS, there are limited interventions to mitigate the components of this syndrome. A flourishing body of evidence supports the implementation of ICU diaries to reduce the psychological aspects of PICS, which include anxiety, depression, and post-traumatic stress. ^3–8 In addition to showing benefit in ICU survivors, ICU diaries also have a positive impact on the loved ones of the patient. ^4–5 Professional societies actively endorse ICU diaries in order to improve recovery after critical illness.⁹

Although there is increasing support for ICU diaries, there are numerous anecdotal reports of substantial difficulties implementing ICU diaries in the United States, few of which have been documented. To close the gap on ICU diary implementation, we analyze the classes and sources of potential objections to the implementation of ICU diaries at two sites: Hospital A, a 146-bed veterans affairs medical center in the south, and Hospital B, a 330-bed metropolitan academic medical center in the north east.

The purpose of this paper is to describe the challenges faced by both institutions during implementation of an ICU diary program, which includes concerns of liability and patient privacy, diary program development, and implementation and sustainability. We report pragmatic solutions effective in overcoming each institutions’ challenges to facilitate successful implementation and maintenance of ICU diary programs. The process outlined below can be adapted at other institutions to facilitate implementation of ICU diary programs, so that more patients and their loved ones can experience the benefits.

ICU Diary Program Initiation

“Why are we doing this?”

Given the increasing amount of literature to support implementation of ICU diary programs, as well as evidence at both institutions surrounding a high prevalence of psychological stress following critical illness, the unit leadership at both institutions supported the creation of an interprofessional team to develop entity-specific ICU diary programs. Not only has there been evidence that ICU diaries improve emotional wellbeing of patients and their families, there is also anecdotal evidence of improved staff engagement.^10–11 The diaries allow for the teams to relate to the patients on a more personal level through the “Meet the Patient” or “Get to Know Me” sections (Figures 1a and 1b). These pages are set aside for the family and allow the ICU team to know the patient on a more personal level (e.g., favorite TV shows, music, stress relievers), thus humanizing ICU care.

Figure 1.

Elements of the intensive care unit diary: the “Meet the Patient” page (A) and the “Get to Know Me” page (B).

Liability and Patient Privacy Challenges

Professional Liability – “Can this be used against me in court?”

The clinical foundation for content of the ICU diary sparked concern for professional liability amongst nurses and other ICU providers. Hospital B is located in one of the most litigious areas in the United States. The idea of an administrative consent was contemplated initially, to ensure patients and/or family members understood the intent of the diary. A risk management template consent form turned out to be very lengthy, making diary initiation neither straightforward nor easy. A compromise was made to include a participation agreement, rather than formal consent, on the first page of the diary (Figure 2a), similar to the one used by Hospital A (Figure 2b). If acceptance is not obtained by the power of attorney (POA) at the initiation of the diary, it is obtained retrospectively when clinically appropriate. The acceptance form details the right to continue or stop the diary at any point, and that the patient and/or family is responsible for maintaining the diary and its safekeeping once it has been handed over to them. At present, no patient or family member has asked to be removed from participating in the diary program at either hospital. Neither form requires upload to the electronic health record (EHR) or approval from the site’s forms committee as they are not clinical documents.

Figure 2.

Patients and family members agree, in writing, to participate in the diary program using the participation agreement in the healing journal (A) and the family member and patient diary acceptance form (B).

Abbreviations: ICU, intensive care unit; TVHS, Tennessee Valley Healthcare System.

Health Insurance Portability and Accountability Act (HIPAA) – “What if visitors read the diary?”

The diary’s potential to contain health information written by clinicians and then be read by visitors prompted HIPAA concerns. Risk management wanted to ensure that ICU diary entries would not mimic clinical notes found in the EHR. While early drafts of the ICU diary included a HIPAA disclaimer, it was later removed as HIPAA applies to all aspects of hospital care. Thus, methods to conserve confidentiality are described in the entry instructions within the first pages of the diary.

Both institutions designated standard ICU diary locations in their units. The diaries are stored in the same location in each patient room in a specific container mounted to the wall or at the nurse’s station as part of a patient-specific folder. The standardization of diary placement mitigates unintended exposure of patient information contained within the diaries. The covers are designed to be bright so that they stand apart from other health system materials. Staff at both institutions were coached on appropriate diary entries to limit inclusion of sensitive medical information.

Health Record – “Does the diary belong in the health record?”

Initial risk management deliberations at Hospital B implied that all information entered into the diary should also be entered into the health record and it was strongly advised that the team upload a copy of the diary into the patient’s EHR. The diary team had concerns with this request being an invasion of privacy. Risk management also advocated for separate diaries (i.e., one for staff and one for family members), so that the staff entries could be copied into the EHR. The diary team felt this option would diminish the effectiveness of seeing a complete story from both staff and family entries being in the same diary. After continued discussion with risk management and attorney representation, it was determined that because the diary does not contain information to be used for clinical decision making, it should not be a part of the EHR.

Photographs – “What if pictures end up on social media?”

Patients report finding value in seeing photographs of themselves at various stages during their critical illness.^{1, 3, 4, 14–16} Due to legal concerns, however, caution was advised about including or condoning photographs of the patient that could inadvertently end up on social media without the patient’s consent. Hospital B was advised that the patient should consent for photos in which they can be identified, so the team decided to not include photos at this time, but plan to readdress this with diary recipients as the program evolves. The team has opted to include standard photos of the ICU room from the patient’s perspective and photos of noisy equipment within the diary pages. Hospital A includes photos within the diary if specific consent is completed by the patient and/or family member. An instant camera was obtained in order to take pictures for placement in the ICU diary. Family members at both hospitals are encouraged to bring photos of the patient and loved ones into the hospital to not only orient the care teams to the patient prior to critical illness, but also provide support to the patient while they are in the acute phase of their illness. Both patients and family members have reported value in the inclusion of photographs of the patient experiencing major recovery milestones (e.g., walking while on the ventilator for the first time).¹⁴

Documentation of Complaints in the ICU Diary – “What if someone complains in the diary?”

Risk management was concerned with complaints being written into the diary by family members. To mitigate this concern, entries are reviewed by a team member on a daily basis. Additionally, participants are advised to voice concerns in real time with the care team. The diary belongs to the patient and their loved ones, so they are encouraged to write anything they want, even if that includes dissatisfaction with the situation their loved one is in, the care provided, or with the team members.

Unwanted Diaries – “What if the patient doesn’t want the diary?”

Although the teams took steps to minimize health related information within the diaries, proactive plans were created to protect the patient’s information should a diary ultimately be unwanted. Both institutions decided to store unwanted diaries in a secure locked drawer for one year.¹⁷ At the end of the year, the patient and/or family member is contacted to determine if the diary is still unwanted. If the diary remains unwanted, it is securely destroyed. Otherwise, it is returned to the patient and/or family member. At this point in time, neither institution has had to destroy a diary.

Patient Death- “What is done with a diary if the patient dies?”

When a patient who has an ICU diary dies, the diary is offered to the patient’s loved ones. The diaries are offered when the patient meets inclusion criteria (discussed below) and are continued even in light of potential poor prognoses. As ICU diaries have a proven therapeutic benefit for family members as well as patients, the diary teams felt it was important to not withhold this evidence-based practice despite an anticipated ultimate decline of the patient. After the patient dies, the process is the same as for other transitions out of the unit. If the family does not wish to keep the diary, it is held for one year in a secure location. If the family still does not want the diary when it is offered to them a year later, it is securely destroyed.

ICU Diary Program Development

Standard Operating Procedure (SOP) – “How do we operationalize this?”

The teams were concerned about their lack of experience using ICU diaries, and the few sites who have implemented diaries have done so with varying levels of success. Having a formal, tightly controlled process lowers liability risks and provides a structure to follow repeatedly. Diaries at both institutions include the following important information:

• Purpose of an ICU diary

• Simple instructions for how to make an entry

• Common terms that may be used in the ICU

• Quick tips for families and caregivers

Additionally, both institutions developed detailed SOPs that include the following content:

• Background information on why the journal was created

• Process maps (see Supplementary Materials)

• Inclusion criteria for the identification of eligible patients

• How to approach patients and families with the diary

• Where the tracking information and blank diaries are housed on the unit

• Team communication about the diary

• Standard definitions

• Details for the exchange of diaries as patients leave the unit

Inclusion Criteria – “Who gets a diary?”

Both institutions target patients at high risk for the development of post-intensive care syndrome (PICS) which encompasses the physical, mental, and cognitive deficits experienced by ICU survivors. Both hospitals initiate an ICU diary for all patients who are mechanically ventilated for greater than 48 hours. Such patients will likely receive sedation and have fragmented memories, thus, significantly benefit from the diary. Patients who do not meet the inclusion criteria are not offered a diary. Those who cannot read or write English proficiently are not excluded as the entries can be translated or read aloud at a later time. Additionally, Hospital A patients are eligible for an ICU diary if they are delirious or deemed to be at high risk for delirium by the clinical nurse. The inclusion criteria were created not only to target high risk patients, but also to allocate the currently limited funds to those anticipated to have the most benefit.

Staff Awareness – “How do we do this?”

At the initial implementation of the programs, staff were unsure how to start a diary, but also were concerned with knowing what to write, especially in difficult situations (e.g., combative patient, cardiac arrest). The collaborative interdisciplinary atmosphere of both hospitals led the teams to educate and coach all professional staff. The team completed initial education at various staff meetings, including nursing, respiratory therapy, rehabilitation medication, critical care pharmacy, and provider meetings prior to ICU diary implementation. Additionally, tip sheets and frequently asked questions were rotated amongst the various staff. The most beneficial exercise included writing practice entries with an ICU diary team member.¹⁰ This facilitated immediate feedback on both successful entries and entries staff found difficult to write.

Infection Control – “What if my patient is on isolation?”

Infection control was a significant concern for staff as the diary is stored in a wall pocket inside the patient’s room. The diaries at Hospital B are made with a plastic cover that can be cleansed with disinfectant wipes if taken from the room. Isolation precautions have not been a barrier to staff writing diary entries inside the patient room. Staff (even the unit secretary!) take a few extra minutes in airborne isolation rooms to write entries.

Diaries at Hospital A are typically stored either in the standardized location in the patient’s room or at the nurse’s station directly across from each patient room. If the patient is on isolation precautions, the diary will always stay outside the room. Family members and staff are invited to make entries outside the room, or the diary can be taken to the waiting area.

ICU Diary Implementation and Sustainability

This practice change, like others, takes time and continued reinforcement from diary champions. During the first two months of Hospital B’s ICU diary program, most diaries were initiated by the unit pharmacist and the Clinical Nurse Specialist (CNS) as they coached the nursing staff to initiate diaries for eligible patients. Hospital A had a similar experience, as the Clinical Nurse Leader (CNL) initiated a majority of the diaries during the first year of the program.

Another barrier to initiating a diary is the length of time required to write the first entry, detailing how the patient arrived in the ICU (i.e., ICU admission entry). This section can be as few as three sentences or may fill an entire page. It tells the story of how the patient was feeling before coming to the hospital, what organs are sick, and perhaps, where they were transferred from. Although this section may take up to ten minutes to complete, it is highly valued by patients when reviewing their journals. ^9,11,12

Staff at both institutions experienced a hesitancy to initiate a diary when extubation is anticipated around the 48-hour mark. Continued encouragement by project leaders to initiate a diary at the point when a patient is eligible diminishes the frequency of this scenario. The ultimate goal is for all nurses to be comfortable offering an ICU diary, as they are consistently present during the patient’s care. Diary champions and other staff members are initiating diaries at both institutions without being prompted.

Creating Daily Diary Entries

All staff and families are invited to make entries in the ICU diaries. Staff entries are not mandated, but they are encouraged by diary champions. Patients have reported feeling unsettled and frustrated when gaps occur in the daily entries, and wish to read a more detailed entry in how they arrived in the ICU.^2,5,12 Both institutions have made a goal for one entry by any staff member for both day shift and night shift.

Staff may be reluctant to write an entry when nothing positive occurred during the shift. In such cases, having a standard line such as, “We share in the disappointment with your family…” may be useful. One-on-one coaching sessions with unit champions have been beneficial for addressing reluctance to write about difficult situations and challenging patients. When difficult situations occur, it may be more feasible to write about the patient’s comfort, who has called or visited, current events, or sounds in the room.

Regarding competing time demands, nurses have reported writing at the end of the shift is better because it is possible to summarize shift events and provide an informed entry more quickly. Respiratory therapists often write after an intervention, such as a spontaneous breathing trial or mode change, so the patient can track the progress of being weaned from mechanical ventilation. Physical, occupational, and speech therapists write after a session with the patient in order for the patient to track progress. The CNS and CNL of each team write an entry during morning rounds and as part of the oversight process (e.g., gauging staff and family participation). The pharmacist, advanced practice provider (APP), or physician writes an entry to summarize rounds. Physicians and APPs were initially challenged to find time in their workflow to consistently write diary entries, but would suggest that the loved ones of the patient take the opportunity to write when the patient is in a procedure. Family members write at all times throughout the day, often contributing much longer entries, and even drawings in some cases.

Tracking Patients with a Diary – “How do I know who has a diary?”

Entries were sometimes missed because the team was not aware of which patients had an ICU diary. Laminated signs were created and are posted on the door of a patient room who has a diary. Diary patients can also be identified on the patient assignment board or dashboards. Blank diaries, pens, and laminated door signs are best stored in a centralized unit location, such as the nurses’ station. Other centrally-stored resources to enhance ICU diary implementation and tracking include the SOP and instructions, tracking log, process map, responses to frequently asked questions, and example diary entries.

Both hospitals created and utilize a registry. For example, at Hospital B, a paper registry hangs in the designated diary cabinet with the blank journals. Staff place a patient label on the registry when initiating a journal. The CNS monitors the paper registry and enters this information into an electronic database, so that the patients and their loved ones can be included in ICU survivorship outreach if they choose. The CNS also created a list in the EHR viewable by diary team members to help track patients with diaries as they move throughout the system. The list includes the patient’s current location and discharge disposition.

Transitions of care – “Are other units using the diary?”

The continuation of a diary that has been started in the ICU is an evolving process and is being done in a few cases. Diaries are passed on with the patient and/or family member upon transfer from the ICU, so long as someone of sound mind is present to accept responsibility for it. The medicine floor where Hospital B transfers many patients is receptive of the diary project, in part because the CNS of that floor has experience journaling with patients in long term acute care. The Acute Care of the Elderly (ACE) Unit also continues to write entries, as the ICU diary is similar to their reminiscing booklets. The palliative care unit at Hospital A is in the process of learning to create entries for patients who transfer to their unit.

Debriefing – “Does someone review the diary with the patient?”

ICU diary debriefing is an evolving process, because there is uncertainty in existing literature as to the best time to review an ICU diary with the patient. A nurse or respiratory therapist will review the diary with a patient who requests a debriefing before hospital discharge. Patients are invited to bring ICU diaries with them to peer support sessions offered by the CNS, social worker, and chaplain. Most often, family members debrief with the patient several months after discharge when the patient feels ready to read the diary. In some circumstances, diaries have been continued for re-hospitalized patients who bring the diary back with them.

Diary Funding – “How do we pay for all this?”

Hospital B started with a small grant which funded a study to evaluate for strategies to reduce PICS and PICS-Family. The diaries cost $6 per spiral-bound copy and were uniquely designed to include photographs of the local area taken by the ICU pharmacist, and meaningful quotations on every other page. The team members document tasks and clinical functions extensively in the EHR, but feel a uniquely designed diary containing hand-written entries better expresses the caring nature of treatments being provided for the patient and loved ones.

There were no extra funds to support initiation or sustainment of the diary program at Hospital A. All materials to create the diary and the program were secured from supplies and resources already available to the unit. The only extra purchase required was basic composition notebooks, which the project leader bought out of pocket for 25 cents per notebook. The Hospital A team has designed a diary for print in spiral bound form when funds become available. In both circumstances, the diaries were inexpensive to implement compared to the perceived benefits expressed by the patients and their family members.

Conclusions

Implementation of ICU diaries at Hospital A and Hospital B has resulted in anecdotally positive and affirmational response from patients, family members, and staff. Families are embracing the process and writing long entries, which has led to increased staff engagement with the journals. The care teams at these centers hope to evaluate long-term outcomes associated with ICU diaries now they have surpassed the perceived challenges to implementing their programs. Other institutions pursuing ICU diary program implementation should expect to develop strategies to overcome barriers related to concerns of liability and patient privacy, diary program development, and implementation and sustainability.

Table.

Challenges and solutions to implementation of ICU diary program

Challenge	Solutions
Liability and privacy concerns
Professional liability	Procedural consent is not required Participation agreement is signed Patient acceptance form is completed when the diary is handed off upon transfer from the unit Participation is voluntary
HIPAA	Guidelines direct staff and families SOP guides process
Exclusion from medical record	Journals are not photocopied for inclusion in the electronic health record
Use of photographs	Nondigital format Requires specific consent
Handling of complaints	Daily review by team member
Secure destruction	Create process for unwanted journals
ICU diary program development
SOP	Implementation guidelines assist with strategies to keep the diaries safe and secure Minimize the amount of protected health information in the journals to limit liability
Inclusion criteria	Define who is offered a diary Define when a diary is offered
Awareness	Provide coaching on implementation plan and location of materials Provide ongoing coaching and mentoring of staff National guidelines recommend ICU diaries to reduce anxiety, depression, and posttraumatic stress in ICU survivors and their loved ones
Infection control	Diary covers should be able to be cleansed with disinfectant wipes
ICU diary implementation and sustainability
Initiation	Diary champions complete daily rounds to remind staff which patients meet inclusion criteria Champions assist staff in writing their first entry during the initial months of implementation
Daily entries	A minimal amount of time is necessary to complete an entry Ask for help from a coworker Encourage patients’ loved ones to write Entries should not mimic progress notes Patients value entries from multiple people Provide examples for entries related to difficult situations in SOP Entries should be written at a 6th grade reading level
Tracking	Paper registry with patient stickers to track upon initiation Laminated identifier on patient door and/or “Diary” marked on assignment board List in electronic health record
Options for debriefing with patient	Over the phone At PICS clinic visit At peer support group
Obtaining funds	Grant funding Philanthropic funding

Abbreviations: HIPAA, Health Insurance Portability and Accountability Act; ICU, intensive care unit; PICS, post-intensive care syndrome; SOP, standard operating procedure.