IDPH Uniform DNR Advance Directive
POLST Illinois
Summary Document
Introduction: Advance Care Planning and Advance Directives
Every person has the right to accept or decline medical treatment. This right is maintained even if the person loses the capacity to make medical decisions. One way this right is exercised is through “advance care planning,” which means expressing wishes for future medical care in advance of a healthcare crisis. A decisional adult can express advance care planning wishes by assigning proxy decision-makers (e.g., “agent”) as well as by stating specific instructions for treatment. These wishes can be put in writing, on forms called “advance directives.”
There are a number of state-recognized advance directives in Illinois, including the Power of Attorney for Health Care, the Living Will, the Declaration for Mental Health Treatment and the Uniform Do-Not-Resuscitate (DNR) Advance Directive. This document will address only the latter document. Of note, and particular to Illinois, the DNR Advance Directive document is both a patient advance directive and a physician order.
Background: Evolution of Out-of-Hospital DNR Forms in Illinois
The Illinois Department of Public Health (IDPH) Uniform Do-Not-Resuscitate (DNR) Advance Directive allows individuals to outline what their wishes are in case of medical emergencies to direct the medical care they are given, be it by paramedics, physicians, hospitals and/or nursing homes. The original version of this form was released for use in 2005; however, it was not the first form used to indicate out-of-hospital resuscitation wishes.
The original Illinois Department of Public Health (IDPH) orange DNR form was initiated by Illinois Emergency Medical Services (EMS) leadership in order to allow for a uniform and understandable instruction to first responders to cardiac arrests in the field. The “orange form,” as it came to be known, was introduced for use in Illinois in 2000. Following its release, it became clear that the form would impact providers at other sites along the healthcare continuum, e.g. hospital emergency rooms, hospices, nursing homes. Subsequent legislation instructed the IDPH to develop an “IDPH Uniform DNR Order Form” which would account for use by other providers and replace the original “orange form.” IDPH convened an interdisciplinary task force that developed the “IDPH Uniform DNR Order Form” which was released for use in June, 2005. Subsequent legislative changes have included a title change, to “IDPH Uniform DNR Advance Directive” (2006), as well as a decrease of the witnessing requirement from two individuals to one (2010).
From 2006 to 2009, the Retirement Research Foundation provided funding for the Someone to Trust (STT) Advance Care Planning initiative. During this time, STT formed a coalition to support a local program to promote education on and effective use of advance directives and advance care planning. The coalition consisted of Chicago-area hospitals, hospices, nursing homes, and other healthcare and advocacy organizations that included: the Metropolitan Chicago Healthcare Council, the Institute of Medicine of Chicago, Illinois Attorney General’s office, the Chicago Department of Public Health, the Illinois State Medical Society (ISMS), and the Chicago End-of-Life Care Coalition (CECC).
One of the task forces created by the STT initiative identified the current Illinois Uniform DNR form as a barrier to honoring patient wishes for life-sustaining treatment. Since its release in 2005, experience with the IDPH Uniform DNR form has generated recognition that it could be greatly improved upon and that it includes some confusing and incomplete aspects. Feedback from users of the form throughout the state was plentiful. Recognizing this and based on the feedback, the Metropolitan Chicago Healthcare Council convened a working group in 2007 of area physicians, ethicists, EMS representatives, and others to draft a revision of the form to be presented to IDPH for consideration as a replacement of the current form. The taskforce included representatives from the IDPH, EMS, ISMS, IHA, CECC, STT, hospital ethicists, chaplains, and practicing physicians and nurses. After numerous meetings and revised drafts, the group was unable to reach consensus on a draft that addressed the concerns of multiple parties, and the process was paused.
National POLST Initiative
The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes.
Originally developed in Oregon in the 1990’s, there are POLST programs in thirteen states including California and New York, and an additional 22 states, including Illinois, where POLST forms and programs are being considered. The POLST form differs from a DNR form in that it addresses more life-sustaining treatment options than CPR and is recognized and honored by all institutions along the healthcare continuum in the states where it is utilized. The form travels with the patient across the continuum of health care, whether the patient is at home, a long term care facility, hospital or hospice. More information is available at www.polst.org.
POLST in Illinois
In November 2010, participants from the prior DNR form workgroups and other stakeholders were invited to a local meeting with Susan Tolle, MD, the developer of the original POLST program in Oregon as well as a founder of the National POLST Initiative. In February 2011, in an effort to facilitate the POLST process, HB 3134 was brought to the state legislature by Rep. Sarah Feigenholz, and co-sponsored by Rep. Robyn Gabel, who had attended the November meeting. The bill stipulates that the IDPH Uniform DNR Advance Directive form “shall meet the minimum requirements to nationally be considered a Physician Orders for Life-Sustaining Treatment [POLST] form.” It passed through both chambers unanimously and was signed by the governor in mid-August, enrolled as PA-97-0382, effective January 1, 2012.
In the meantime, anticipating the passage of HB 3134, a small interdisciplinary writing group drafted a “DNR/POLST” form that is believed to meet current Illinois state regulations and also complies with the national POLST paradigm. The workgroup included representatives from hospitals, Emergency Medical Services, physician and nursing groups, and related organizations. The group studied existing POLST forms in other states, assured that POLST form standards were met and adhered to Illinois legal requirements for a DNR form, and took into account wording and formatting that would best meet the needs of healthcare professionals and consumers alike. In the process, the group was advised by leaders from the national POLST initiative. The draft was then shared with a broader group of interested parties, and feedback and suggestions for improvement were integrated into subsequent drafts. The resultant draft has been forwarded to the Illinois Department of Public Health as a suggested starting point for the department to consider.
As instructed by PA-97-0382, IDPH will proceed to consult with a “statewide professional organization representing physicians licensed to practice medicine in all its branches, statewide organizations representing nursing homes, registered professional nurses, and emergency medical systems, and a statewide organization representing hospitals.” The POLST Illinois task force has volunteered to assemble, develop and publish this form.
Common Questions about the POLST Illinois Draft
- Has IDPH approved the current draft? No. IDPH has expressed interest in partnering with the developing POLST Illinois task force to continue work on the draft. Having received broad input from multiple clinical disciplines across the state, we are well positioned to work with the Department on this process.
- Is it necessary for this document to be signed and witnessed? Yes. These requirements are legislated and remain unchanged from the current IDPH Uniform DNR Advance Directive form. Not everyone agrees that these should be requirements. Any changes to these parts of the form would require separate legislation.
- Does the provider who signs the document have to be an attending physician? Yes. Again, the physician signature requirement is legislated, and the determination that the physician must be an attending was made previously by IDPH legal counsel.
- How will this document interact with the POAHC form? The Power of Attorney for Health Care form is meant for anyone aged 18 years or older. In addition, the DNR/POLST form is meant to be completed by anyone who is frail, has a chronic, progressive medical condition, and/or is terminally ill. The former is primarily a proxy document, whereas the POLST form allows specific patient wishes to be translated into physician orders.
- Is this document an advance directive or a physician’s order? Both, really. These are statements made by a person, or, if nondecisional, his/her substitute decision-maker, that reflect the individual’s specific wishes for treatment, which are then translated into physician orders so that practitioners across the spectrum of care can activate them immediately in cases of emergency or when the person is unable to directly communicate wishes.
Next Steps
Once a new “IDPH Uniform DNR Advance Directives/ Physician Orders for Life-Sustaining Treatment” form is adopted, as is instructed by the legislation, other critical elements of a formal POLST program in Illinois will include:
- Extensive outreach and education for clinicians regarding how to conduct a conversation about code status with patients in a manner appropriate to their levels of understanding.
- Education of EMS and other first responders regarding the patient-centered interpretation of the form in the field.
- Education of the public about advance care planning, the availability and use of POLST, and its interface with other advance directives such as the healthcare power of attorney.
- Development of a secure storage and retrieval system for the document, such that patient changes can be updated and that providers in the field and at hospitals and nursing homes may have access in order to properly deliver care to patients.
- Recognition of a single entity within the state that is willing to accept primary ownership for the ongoing evaluation of the POLST form and its use, as is standard.
- Plan for early assessment of a POLST form in Illinois.
- Recognition of a single entity within the state that will formally sponsor the POLST Illinois program. Ongoing evaluation and improvement of the POLST form and its use is the expected standard of practice of other states and regions with endorsed National POLST Initiative programs.
- Development of a formal statewide POLST taskforce.
Conference “POLST Illinois Leaders: Next Steps in Program Development”
On January 24, 2012, a leadership recruitment meeting was held at UIC Hospital, sponsored by the Retirement Research Foundation. Approximately 70 individuals from across the state participated, representing nearly 60 different organizations ranging from healthcare institutions, to regulatory entities, to community and professional organization, and trade groups.
The purpose of the meeting was to:
- Bring together representatives of constituencies affected by the implementation of a POLST program in Illinois;
- Provide information on the POLST paradigm and its effectiveness as a best practice for documenting patient wishes for life-sustaining treatments;
- Discuss steps required to establish an approved POLST program as defined by the national POLST organization;
- Initiate a structure (e.g. coalition, task force, etc) to take necessary action to develop the program in Illinois;
- Invite input from attendees on the creation of a program for Illinois; and
- Obtain commitment from attendees to participate in the establishment and implementation of an approved POLST program through participations in workgroups.
After a welcome by UIC host Lisa Anderson, PhD, and opening remarks from Illinois State Representative Robyn Gabel, the keynote address was presented by Judy Citko, JD, Vice Chair of the national POLST Board of Directors and Executive Director of the Coalition for Compassionate Care of California. Karen Long and Julie Goldstein, MD, summarized the history of the development of statewide DNR documents over the past decade. Ivan Handler, Chief Technology Officer of the Governor’s Office of Health Information Technology, presented information on the developing cloud-based Illinois Health Information Exchange and described exciting innovations that may be used in the future for securely storing and retrieving advance care planning documents. Mary Beth Hardy of Cantata Adult Life Services then facilitated a lively discussion wherein the group brainstormed next steps for program development. Together, the group identified resources, potential barriers and additional statewide organizations and individuals who should be contacted to participate in the project. The group reviewed a draft organizational chart for the POLST Illinois program, and participants volunteered for work groups and committees according to their interests and capabilities.
Conclusion
In the coming months, a POLST Leadership Task Force will convene, a “home” for the POLST program will be identified, and a document workgroup will continue drafting a POLST form in partnership with IDPH. In addition, workgroups/committees will: develop a website/ communications mechanism (in the meantime, information is available to the public under the POLST tab on http://www.cecc.info/); identify collaboratives where POLST pilot programs can be initiated; and draft a funding proposal to cover a first year or two of planning and start-up expenses. Additional committees will be convened as the project progresses.
The goal of this activity is to maximize patients’ control of their medical care by helping them establish a care plan that aligns with their own treatment wishes with what is medically realistic, and to document these wishes in a uniform, secure and retrievable document that can be used to direct medical care in a variety of settings. The Illinois POLST form is one means of establishing that care plan.
January 31, 2012
