EHRs’ Potential for Improving
End-of-Life Care Documentation
IndustryView | 2015

According to the Pew Research Center, approximately one-third of Americans document their preferences for end-of-life medical care through forms such as living wills. However, no standardized process exists for health care providers to record and store these vital documents.

Software Advice surveyed patients and caregivers in order to help hospitals, hospices and long-term care communities determine whether to invest in an electronic health records (EHR) system for improving the documentation of end-of-life care decisions.

Key Findings:

  1. A combined 69 percent of patients surveyed say caregiver accessibility to end-of-life medical treatment plans is “extremely” or “very important.”
  2.  
  3. The ability to access end-of-life care instructions from any location is the top reason respondents prefer them to be stored in an EHR system versus on paper.
  4.  
  5. A majority (65 percent) of professional caregivers surveyed believe it is more efficient to store end-of-life instructions in an EHR system than in paper records.

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Introduction

When a patient’s health is in grave, life-threatening condition, doctors may have precious little time to determine the best course of treatment in accordance with that patient’s wishes. These wishes, which can range from denying dialysis to accepting certain sedatives, can be addressed ahead of time through end-of-life care documentation, such as advance directives and Physician Orders for Life-Sustaining Treatment (POLST).

However, there’s no guarantee these forms will be consulted when it matters most. They are often difficult to access and easy to ignore, potentially resulting in medical treatments that conflict with a patient’s wishes. Studies cited by the Center for Disease Control (CDC) found that between 65 and 76 percent of physicians whose patients had an advance directive were unaware of its existence.

Furthermore, the various manual and digital methods for storing these forms make it challenging for them to be easily called upon, even when a patient’s care team knows they do exist. This can be detrimental to quality of care, as patients may be submitted to unwanted, invasive and expensive procedures (e.g., blood transfusions or ventilator placement). These situations have even led to lawsuits against health care providers.

With this in mind, we first set out to understand the perspectives and needs of the people responsible for these end-of-life decision documents: patients themselves. We then consulted with caregivers, politicians and software vendors to determine the best practices for end-of-life care documentation, as well as the impact technology can have on making these plans readily accessible to physicians.

End-of-Life Document Accessibility Is Important to Most Patients

In our patient survey, we screened respondents to ensure they had made plans for end-of-life care decisions (e.g., by creating a living will or similar advanced directive form) for themselves or a parent within the past two years. We then asked them to rate the importance of physicians and professional caregivers being able to access to those care plans. A combined 69 percent of our sample say this is “extremely” or “very important.”

Importance of Caregiver Accessibility to End-of-Life Documents

Importance of Caregiver Accessibility to End-of-Life Documents

We were surprised to see that 12 percent of respondents did not find accessibility important. It seems counterintuitive to take the time to determine end-of-life care plans, but not to consider whether the care team in charge of carrying them out can access them.

According to U.S. Representative Earl Blumenauer (D-Ore.), this could partly be due to patients’ overall reluctance to engage in end-of-life discussions with their physicians.

Rep. Blumenauer introduced the Personalize Your Care Act in March 2013 (which has not yet been enacted). This bill would, among other things, provide Medicare and Medicaid coverage for voluntary patient-physician discussions on end-of-life care planning.

“Many people—physicians included—are uncomfortable with the discussion, because it’s not pleasant to speak about or think about your own mortality when you feel fine,” says Blumenauer.

Nevertheless, he explains why it is so important for Americans to determine and document their preferences in a way that enables physicians to access them:


People deserve the peace of mind of knowing that they are going to have their wishes respected, wherever they may be. That’s why the documentation component is so necessary. Doctors have very little time to act in many end-of-life circumstances, and it’s only through careful and thoughtful documentation that they are going to be able to follow through on what their patients want—quickly enough for it to actually make a difference.U.S. Representative Earl Blumenauer (D-Ore.)

Blumenauer’s bill calls for the inclusion of end-of-life care documents in electronic health records (EHRs) storage to “increase the likelihood these documents are kept up-to-date and available at the right place, at the right time.” The documents he refers to include both advance directives and POLST.

Both types of documents are meant to complement one another, as they serve slightly different purposes and populations. Advance directives can be created by anyone over the age of 18. They encompass a variety of legal documents for determining future medical treatment, such as living wills, forms appointing a legal health care representative and instructions for “Do Not Resuscitate” orders, which specify whether a patient wants cardiopulmonary resuscitation (CPR) to be performed in certain emergency situations.

POLST forms, on the other hand, are specifically for patients suffering from serious, chronic or progressive illnesses. They spell out a patient’s wishes for current medical treatment, including the use of tracheal intubation, antibiotics, feeding tubes and more.

National POLST Paradigm

Source: National POLST Paradigm

Another key differentiating factor between the two comes from the government. If an eligible health care provider records advance directives in its EHR for more than 50 percent of its patients age 65 and older, that provider can meet one of the qualifications needed to receive federal financial incentives.

Advance directives are available in every state, though some states may have slightly different names and laws for the forms. By contrast, there are no federal incentives regarding POLST integration in EHR systems, and not all states have standardized POLST forms available.

While it’s important to consider these differences, many calling for the need to improve documentation in end-of-life care planning refer to both POLST and advance directives when discussing recommendations. Similarly, the rest of this report will refer to both types of documents when referencing end-of-life care plans.

More Than One-Quarter of Patients Unsure Where to Store Directives

The EHRs mentioned above are just one of the places end-of-life care plans can be stored. When asked to choose from a list of options, the highest percentage of respondents (45 percent) say they would feel most comfortable documenting end-of-life care plans for themselves or a parent on paper copies, which could then be given to a care team or family member.

Notably, more than one-quarter (27 percent) are not sure what documentation method they would feel most comfortable with, while 12 percent prefer an EHR. Another 9 percent are partial to an online registry, and 7 percent say mobile apps (such as this one) would be best.

Preferred Documentation for End-of-Life Care Directives

Preferred Documentation for End-of-Life Care Directives

The high percentage of respondents unsure about where to store end-of-life care plans implies that there are opportunities to engage patients and their families, and to guide their choices through educational outreach. Dr. Richard Loomis, senior medical director for EHR vendor Practice Fusion, says this is particularly true when it comes to electronic documentation.

“Patients may not be informed of the benefits of having their health care records, including any advance directives, available digitally,” he says.

Paper records are more familiar to patients, so it stands to reason that nearly half of our sample prefer this method for keeping track of end-of-life care plans. However, it is important for patients to consider the benefits of EHRs over paper forms.

“EHRs offer many layers of security protection, [which are] not available with paper records,” Loomis notes. “As electronic medical records continue to advance and benefits increase, patient acceptance and support will continue to grow.”

This matter is not just one of added value: it can actually be counter-productive to keep paper records, as they can easily get misplaced or left behind in emergency situations. Dr. Ming Tai-Seale, senior scientist at the Palo Alto Medical Foundation's Research Institute and a consulting professor at the Stanford School of Medicine, explains further.

“What if a person has already done their [end-of-life care] planning, and the piece of paper is somewhere at home, [posted] on the refrigerator or somewhere else?” she says. “EHRs hold the promise of having a place to hold these important documents and decisions, because they are not location-specific. They can potentially be accessible from anywhere in the world.”

Accessibility Is Top Reason for Preferring EHR Documentation to Paper

Next, we asked respondents what reasons would motivate them to store end-of-life care instructions in an EHR as opposed to on paper, allowing them to select multiple answers. The highest percentage of respondents say the ability to access directives from any location would most influence their decision to go digital (chosen by 41 percent).

The fact that electronic documents don’t have to be physically retrieved is the second-most popular factor, chosen by 21 percent of our sample. The ability to modify directives remotely and the fact that EHRs are recommended for documenting end-of-life care plans by some medical professionals are slightly less popular reasons (chosen by 19 and 11 percent of respondents, respectively).

Reasons for Considering EHR Over Paper Documentation

Reasons for Considering EHR Over Paper Documentation

In theory, EHRs should provide improved accessibility for end-of-life care plans—but in practice, that’s not always the case. Tai-Seale, a believer in EHRs for this kind of documentation, says there is still work to be done to ensure optimum accessibility. She cites a study she led that found advance directives documents were difficult to track down, even when they had been entered in an EHR system. That’s because these forms are often buried in a patient’s progress notes (part of the clinical process used to record a wide variety of details about a patient’s condition).

“The progress notes are like an ocean,” Tai-Seale says. “It’s like looking for a needle in a haystack. [Advance directive forms] need to have a standardized, searchable location.”

Some EHR vendors have already started heeding this advice. Practice Fusion’s Loomis explains the reasoning behind his solution’s setup.

Practice Fusion patient summary

Practice Fusion patient summary

“Once securely logged in, a provider can review a patient’s advance directives on the patient summary—the first screen of the patient’s chart—along with other important health history, such as medications and allergies,” Loomis explains.

“This not only makes it easy to locate and review in an urgent situation, but also prompts providers to initiate discussions with their patients about end-of-life care, which may get overlooked in a brief office visit.”

Many Providers Store End-of-Life Care Directives in Paper Records

For the next part of this report, we conducted a small poll of health care providers who regularly carry out end-of-life care. Out of 47 professional caregivers polled, 26 work in hospitals, 11 work in long-term care communities and 10 work at hospice or palliative care centers.

When asked how end-of-life care documents are stored for individual patients at their facility, nearly one-third say these forms are physical paper records, kept in a file. Twenty-nine percent scan the original paper copies into a computer system so the forms are digitized, and a significant 28 percent enter them into an EHR.

Provider Storage of End-of-Life Care Directives

Provider Storage of End-of-Life Care Directives

Tai-Seale says some providers may have an EHR system available, but choose not to use it for end-of-life care plan documentation due to the logistics involved in digitizing paper forms.

“It could be a little cumbersome, because if providers have a patient’s form filled out with signatures, they’ll need to scan it in,” she explains. “And the people who do the scanning may be in a different location, so there’s an added workflow [process], and that’s kind of a barrier.”

For example, a health care professional who receives a patient’s forms may need the assistance of administrative staff to upload them, and that employee could be in a different wing or floor of the medical center. Tai-Seale says care teams and support staff are sometimes located in different buildings altogether, depending on the provider’s needs and layout.

The fact that 12 percent of providers are not sure where their patients’ end-of-life care documentation is located does not bode well. This could be because many patients do not share these forms with their care teams at all, and some may even store them in safe deposit boxes at home—a practice experts strongly advise against.

EHRs Is a More Efficient Documentation Method Than Paper Records

Even though only 28 percent of our small sample say they enter end-of-life decision documents in EHRs, these systems are still perceived as a more efficient storage method than paper records. In fact, a combined 65 percent of professional health care providers polled say EHRs are “somewhat” or “much more efficient.”

EHRs vs. Paper for End-of-Life Care Documentation

EHRs vs. Paper for End-of-Life Care Documentation

Researchers have suggested that entering data regarding end-of-life care in electronic health records could improve consistency between patients’ preferences and their medical treatment. Though EHRs may not yet be a perfect solution for end-of-life plan accessibility, Ting-Seale agrees they are still an improvement over the paper-only documentation methods used in some facilities.

“The default is to stick [advance care forms] into a folder in a cabinet that’s closed,” she says. “And if you think about an assisted living facility, for example, if the advance care planning document is in the office in a locked file cabinet, and the EMT is called in the middle of the night—as often happens—what good does that do?”

Varying Confidence Levels in Ability to Quickly Retrieve Directives

Next, we wanted to get a sense of how confident health care providers feel in their ability to quickly call up their patients’ end-of-life care plans (“quickly” meaning in less than two minutes). Sixteen percent say they are “extremely confident,” 22 percent are “not at all confident” and the rest are somewhere in between.

Confidence in Quick Retrieval of End-of-Life Care Documents

Confidence in Quick Retrieval of End-of-Life Care Documents

The two-minute metric was chosen based on this account of the University of Texas Southwestern Medical Center’s attempts to get the retrieval process down from the previous average of 4.3 minutes—a time frame that was clearly too long. The effort to shorten the retrieval time even led the Center to create an “Advance Directive Navigator” tool in its EHR system.

We next looked at how providers’ documentation methods influenced their confidence in quick end-of-life care plan retrieval:

Confidence in Quick Retrieval of End-of-Life Care Documents, by Method

Confidence in Quick Retrieval of End-of-Life Care Documents, by Method

Providers employing EHR-based documentation systems report overall higher levels of confidence than those using any other method. Anne Montgomery, senior policy analyst for the Center for Elder Care and Advanced Illness, says influential groups such as the Institute of Medicine now support EHR use specifically for the purpose of storing end-of-life care documents in their recommendations. This may inspire other physicians to follow suit.

“We believe that development of care plans, including an advance directive in the electronic health record, is the best way to foster concordance with a person's wishes across time, place and provider,” Montgomery says.

Demographics

A closer look at the demographics in our sample reveals that most respondents surveyed for the first part of the report (62 percent) had made, or were making, end-of-life care plans for themselves. The majority are males, and a combined majority (58 percent) are 45 years old and older.

  • Respondents by Patient Type

    Respondents by Patient Type
  • Respondents by Gender

    Respondents by Gender
  • Respondents by Age

    Respondents by Age

For many of us, it’s unsettling to think of talking to family members about how they would want to spend their last days. Thus, it is encouraging to see that nearly 40 percent of our respondents have worked through their discomfort to discuss death with a parent.

Luckily, a host of resources are available for families who believe in the importance of planning end-of-life care, but are unsure how to take the first step. Physicians can encourage patients and their families to discuss their options before formalizing plans. Organizations such as The Conversation Project and Death Over Dinner provide free tips and tools, including conversation starter kits with ideas for icebreakers and checklists on what to address in advance care planning talks.

Conclusions

This survey data supports the key point we encountered in outside research reports and expert interviews: EHRs are the best available medium for improving end-of-life care documentation. Health care providers using EHR systems say they’re more confident in their ability to quickly call upon these forms than providers employing other documentation methods do. They also note that EHRs are a more efficient method than paper records.

As such, health care providers seeking a documentation solution for patient end-of-life care plans should research EHR vendors that make POLST and/or advance directive forms easily visible and navigable.

According to Practice Fusion’s Loomis, systems using cloud-based technology are better for ensuring that records can be shared electronically across multiple locations. This can maximize the opportunities for care teams to actually consult end-of-life care plans during time-sensitive situations.

When it comes to the patient perspective, a recent New York Times article provides context for our findings: “People are living longer with illnesses, and many want more input into how they will spend their final days, including whether they want to die at home or in the hospital, and whether they want full-fledged life-sustaining treatment, just pain relief or something in between.”

To ensure this kind of patient input is actually incorporated into their medical treatment, however, our research shows there is still work to be done. Many patients and their relatives indicate a lack of certainty about best practices for recording and storing end-of-life care plans. Significant percentages of respondents in our sample are either unsure where to keep these important forms, or are not concerned with whether they are accessible to care teams.

Doctors and other professional caregivers (e.g., nurses and aides) should therefore seek out opportunities to educate patients and their families on the importance of determining their end-of-life directives and documenting them in an accessible manner. This can not only make providers’ jobs easier, it can ensure that patients’ wishes are followed when it matters most.

Methodology

To find the data in this report, we conducted two online surveys with different respondent groups: one with 1,169 patients, or patients’ relatives, and one with 47 health care providers. All survey questionnaires undergo an internal peer review process to ensure clarity in wording.

Results are representative of our survey sample, not necessarily the population as a whole. Sources attributed and products referenced in this article may or may not represent client vendors of Software Advice, but vendor status is never used as a basis for selection. Expert commentary solely represents the views of the individual. Chart values are rounded to the nearest whole number.

If you have comments or would like to obtain access to any of the charts above, please contact gaby@softwareadvice.com.


Gaby Loria

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