Updated on: January 25, 2017

Advanced Care Planning: The Time is Now

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Original story posted on: January 23, 2017
As healthcare professionals, we need to personally imagine unfortunate scenarios that affect so many of our patients – for example the sudden loss of capacity, through unexpected illness or injury, to make our own medical decisions. 

Consider these questions: If I am in a serious accident today, will my receiving healthcare team have a copy of my advance care planning document? Will they know whom I’ve appointed as my medical decision-maker, have up-to-date contact information, and understand my expressed wishes? Such vital questions are sometimes seldom considered in much depth, even by those who have spent a lifetime of service in healthcare. 

Fortunately, they have been given much more attention in Virginia over the last two years. Bon Secours has been at the forefront of several initiatives designed to tackle problem areas and to establish best practices in every aspect of the advance care planning (ACP) process. 

Problem No. 1: ACP Document Access

Advance care plans are only useful if we can actually find them. National statistics vary slightly, but while most Americans (approximately 90 percent) have heard of a living will or medical power of attorney, only about 23 percent have a completed ACP document.

Likewise, Virginia statistics demonstrate low figures for document completion. Achieving polling accuracy in this area is complex, however. For example, many patients report having completed ACP documents but have confused an ACP with other document types (e.g. durable power of attorney for finances).

True advance directives traditionally have been stored in a safe-deposit box or kept in a drawer at home until needed in a crisis. If the only person with access/knowledge of the document is incapacitated when the crisis occurs, the healthcare team may never see the patient’s written wishes or know who is authorized to make healthcare decisions for them. For example, did you know an agent named in an advance directive has the authority to make medical decisions for the patient above all others, including a patient’s next of kin? In the absence of an ACP, the patient’s loved ones and care team could be left scrambling, with only moments to identify the appropriate decision-maker and make major medical choices, lacking any time for reflection.

One Solution: Decision-Maker Information, ACP Conversations, and Documents Viewable Across All Settings within the Health System

  • Until recent years, few healthcare providers in pre-crisis, routine care reviewed their patients’ documents or even knew they existed. In some health systems, documents are stored at the encounter level, which essentially leaves them invisible except through deep chart dives. Virginia health systems are now working diligently to properly store and retrieve these vital patient-level documents for review in advance. This requires three essential elements: a) workflows to ask about existing ACP documents, record decision-maker information, and offer education/assistance with ACP; b) an ACP note type that is universally utilized to capture ACP conversations; and c) a discrete storehouse within the electronic health record (EHR) through which all ACP notes, information, and ACP-related documents – advance directives, durable do not resuscitate orders (DDNRs), and physician orders for scope of treatment (POST) – are visible. Document “smart storage”  ensures best practices for: a) document validation (checked prior to scanning to ensure it is signed, dated, and witnessed according to the form’s requirements); and b) digitization: accurate scanning with the correct document descriptor. Ideally, “smart storage” also includes having a new document supersede a prior one in the viewable report.  This will prevent confusion and time lost opening multiple documents to see which is the most recently dated.  
Bon Secours has worked diligently over the past two years to create ACP workflows and the necessary ACP tools in EPIC (for both acute and ambulatory care settings) to strategically address each of the aforementioned issues. Enterprise-wide education is underway to demonstrate the team approach to ACP, emphasizing that every team member, from patient registration/check-in to the provider, has an important role in ACP. Using “click-by-click” demonstrations, staff is taught how to capture ACP decision-maker information, conversations, and documents.   

Not only do health settings need internal processes for successful ACP document storage and retrieval, but all should ideally be part of a larger formal network of information sharing. The “treatment exception” to HIPAA allows for ACP documents to be accessible to healthcare professionals across care environments. EHRs with capacity for interoperability are vital to this process. Working through an EDM forum grant in 2016, Honoring Choices® Virginia and its participating health systems (Bon Secours, HCA Virginia, and VCU Health), along with VDH, ConnectVirginia, and other stakeholders, examined options for maximizing timely access to ACP documents across care settings. Two technically feasible approaches the group focused on were:

  • The use of a health information exchange that can pull information about ACP status from one provider and make it available to another.
  • The use of the state advance directive registry to store ACPs that can be uploaded and accessed from any location.
Upon thorough review of current barriers, the group concluded that the ultimate success of these approaches depends upon their seamless integration into clinical workflow – and upon other factors, such as cost. Strategic work in this area continues, along with other collaborative efforts through new statewide ACP meetings. Exciting opportunities lie ahead.

Problem No. 2: Invalid or Low-Quality ACP Documents

In Virginia, a written advance directive is considered valid if it is signed by the declarant and two witnesses. It does not have to be notarized, or even dated. For health systems and loved ones, however, an undated document is incredibly problematic. If two documents name different individuals as healthcare agents, and express conflicting wishes, which is valid? Risk management and ethical issues abound. Advance directives are also written in legalese and complex medical terminology. Individuals who complete advance directives without assistance may choose contradictory options, forget to sign, or have only one witness. Lastly, the documents often contain vague language such as “if I’m a vegetable, let me go.”

Provider orders pertaining to ACP can also contain errors. Portable orders such as DDNRs and POST are invalid unless dated and properly signed by both the provider and the patient, or if the patient lacks decision-making capacity, by the authorized healthcare decision-maker. Unfortunately, EHRs often contain these technically invalid documents.

One Solution: Focused Education on ACP Document Quality and Validity

Over the past two years, Bon Secours has provided enhanced education specifically regarding ACP document quality. Through new hire orientation, annual compliance training, and ACP-specific education modules and classes, clinical and support staff alike are taught to carefully examine documents before scanning. In ambulatory settings, front-line staff is now trained to send ACP documents brought in by patients into the exam room, where the nurse and provider can review them with the patient.  Only after documents are reviewed for completeness and accurate reflection of the patient’s wishes are they returned to the front desk for scanning. Staff is also more skilled at spotting errors in previously scanned documents that can nullify their validity. Nurse navigators and others specially trained in ACP are particularly adept at detecting problematic documents and reaching out to patients to create new, well-completed advance care plans.

Problem No. 3: Lack of Conversations and Access to ACP Information Prior to Document Completion

ACP documents are often completed in isolation or without reflection of values, beliefs, and goals that may influence decision-making. Many healthcare agents are not even aware that they are named as a patient’s decision-maker until called by the medical team during a crisis. Some patients may not have received medical information that supports a truly informed consent process. And finally, low literacy levels, cultural differences, and limited access to ACP assistance contribute to disparities in healthcare, particularly at the end of life. Honoring Choices® Virginia is an ACP initiative in central Virginia that addresses each of these concerns head-on. Bon Secours has been a participating partner in Honoring Choices® since its inception in 2014. Using certified ACP facilitators (health professionals trained in the Respecting Choices® conversation model), patients, along with their prospective agents, are invited to a conversation and given materials to review in advance of the conversation. These materials include healthcare agent information cards and “decision cards” regarding issues such as breathing assistance, tube feeding, and cardiopulmonary resuscitation. In Bon Secours, Honoring Choices® work occurs exclusively in ambulatory settings as part of routine care and patient wellness. This represents a tremendous culture shift, and the feedback from patients and agents has been overwhelmingly positive. 

Summary

High-quality ACP has the power to transform patient experience and care.  Even bereavement outcomes for survivors are tremendously improved if care received at the end of life is given in accordance with patient wishes. Best practices must include sound processes for information storage and retrieval, document validity, and thoughtful conversations between individuals, their loved ones, and the care team. ACP at its best is a team sport.  

Everyone’s contributions to this work are vital to its continued improvement and ultimate success.
Disclaimer: Every reasonable effort was made to ensure the accuracy of this information at the time it was published. However, due to the nature of industry changes over time we cannot guarantee its validity after the year it was published.
Rebecca Gruszkos, LCSW, ACHP-SW

Rebecca Gruszkos, LCSW, ACHP-SW is the advance care planning project educator for Bon Secours. Prior to this role, Rebecca worked at the bedside in palliative care for nearly 20 years, serving both in hospice and inpatient palliative medicine. Rebecca serves on the Bon Secours Ethics Committee, is an organization faculty member of Respecting Choices® through Honoring Choices® Virginia, and is the key coordinator For Honoring Choices® in Bon Secours. She is also a certified instructor for Last Steps® ACP/POST, serves on the Virginia POST Executive Committee, and is co-regional coordinator for POST in central Virginia.