by Christopher Bell, MS, MBA, Executive Director, Monroe County Medical Society

Health care proxy and MOLST forms are often unavailable when a patient who lacks decision-making capacity arrives at the emergency department. Too often, there is no health care agent or family member with the patient to help make crucial decisions. Therefore, hospital providers have no choice but to aggressively treat and if necessary, resuscitate the patient. This often results in unwanted end of life treatment including intubation.

The primary purpose of a health care proxy is to appoint an agent to make health care decisions in the patient’s best interests and, if known, in accordance with the patient’s wishes and goals. This law was enacted many years ago to comply with the Federal Patient Self-Determination Act and there are still many individuals who have never completed a proxy. However, even when a patient does appoint an agent, it is unfortunate that this individual is often not known at a time when truly needed.

MOLST, on the other hand, is a set of actionable medical orders agreed to by the patient or health care agent, after a discussion of the patient’s values, beliefs, goals, current health status and prognosis and wishes with respect to end of life treatment. MOLST must also be honored by EMS in the patient’s home and anywhere in the community. However, a paper MOLST form may not be accessible when the patient arrives at a hospital. Thus, there have been instances where families or physicians make decisions which are in direct conflict to the patient’s previously expressed wishes to withhold life-sustaining treatment documented on a MOLST.

Recently, New York State Assemblyman Morelle introduced legislation to remedy many of these problems by creating a statewide registry for both MOLST and health care proxy documents. The bill defines MOLST and confirms that MOLST also acts as a non-hospital Do Not Resuscitate (DNR) order. When a MOLST is completed and signed, the provider would have 14 days to submit it to the electronic registry.

This bill also establishes a registry for health care proxy documents as well as living wills, and judicial orders appointing a guardian to make health care decisions for the patient. The New York State Department of Health will be responsible to operate the registry and there will be no cost for submission of the documents or to search the registries. When either the MOLST or proxy is revoked or modified, the person who originally submitted the document must notify the registry of such changes.

Having a registry for both advance directives and medical orders which encompasses the entire state not only would solve the concerns noted above but would hopefully increase the use of eMOLST, the electronic version of MOLST. This has a significant advantage when submitting MOLST to the registry, because the use of eMOLST is programmed in a way to prevent contradicting responses to the questions. Therefore, the MOLST documents in the registry are free of medical errors. Finally, the benefit to patients as well as the medical profession is to enable the retrieval of these documents in a timely manner, and ensure that the patient’s goals and wishes for treatment will be met at the end of life.

As a patient myself, I value the ability to make decisions about my care. I also recognize a real conversation requires time on the part of my physician and as a consumer who values this I think it should also be something that is funded. Fortunately, time spent for these crucial conversations is now a covered service. My physician should be able to take the time necessary to discuss my options and ensure I understand the impact of my decisions. At the risk of sounding too much like a cliché, this level of input at such a difficult time of life will be priceless for me and my loved ones.

April 16, 2018 is the 11th anniversary of National Healthcare Decisions Day, a time set aside to engage, educate and empower individuals to actively participate in advance care planning.

Who: You, your family & loved ones. Everyone 18 years of age & older!
What: Speak with your spouse, significant other, loved ones & doctor about your personal values, beliefs & what is important to you. Designate a health care agent, the person you trust to make decisions if you lose the ability to make an informed medical decision. Complete a health care proxy (known in some states as a durable power of attorney for health care).
Where: Your home, around the kitchen table or wherever your family gathers.
When: April 16 (NHDD) or any time your family gathers, like holidays.
Why: Anyone can face acute illness or injury & lose the ability to make medical decisions. Starting ACP discussions early will ensure your care is directed by someone you trust to make decisions for you. Early conversation provides peace of mind for your loved ones.
How: Real stories can help to start. Share yours or listen to JoAnn’s story. Unfortunately, she knows “It always seems too early, until it’s too late.”

Conversations change lives! Start your conversation today! To learn more, read the Advance Care Planning section of CompassionAndSupport.org

CPR involves artificial breathing and forceful pressure on the chest to try to restart the heart. It usually involves defibrillation and intubation. CPR means that all medical treatments will be done to prolong life when the heart stops or breathing stops, including being placed on a breathing machine and being transferred to the hospital. For patients appropriate for MOLST, survival after CPR is less than 1%. If the patient survives, the patient will be intubated, transferred to the hospital and admitted to the intensive care unit.

by Patricia A. Bomba, MD, MACP

CompassionAndSupport.org is a community website originally created as a project of the Community-wide End-of-life/Palliative Care Initiative (Initiative) and launched in July 2002. It was redesigned in 2007 and by 2018 it desperately needed a fresh look and needed to meet modern web design standards. With support from Excellus BlueCross BlueShield (BCBS) and a lot of team work over the last six months CompassionAndSupport.org has been redesigned and a new sister site, MOLST.org has been created. Both sites were launched on Thursday, March 29. Additional content will be added in the coming weeks. Content will be updated to comply with changes to NYS Public Health Law that go into effect on May 28, 2018. Feedback is welcome!

The two websites are complementary, focus on a population health approach and seamlessly connect. Together, CompassionAndSupport.org and MOLST.org aim to engage, educate and empower patients, families, health care and other professionals about the key pillars of palliative care. CompassionAndSupport.org focuses on advance care planning & advance directives for the general population, along with palliative care & hospice, pain & symptom management, and death & dying. MOLST.org focuses on advance care planning and the MOLST process for seriously ill people supported by a person-centered, family-oriented, 24/7 responsive palliative care plan. Both sites support the multiple dimensions needed for eMOLST implementation. Content includes NY’s community approach to advance care planning, advance directives and MOLST; readers are directed to other websites for state-specific documents, medical order sheets and public health laws.

As the new design is launched, it is helpful to remember the original vision for CompassionAndSupport.org. Initially created as a project of the Initiative, the vision was to provide a reliable resource for patients and families dealing with the challenges of a loved one’s life-threatening or terminal illness. The Initiative was led by an advisory group comprised of over 40 Rochester area leaders from consumer organizations, physician groups, insurers, health systems, nursing homes, hospice, homes for the dying, various faith communities, legal organizations and financial organizations. Nearly 150 professionals and consumers participated in four workgroups.

The website grew quickly as the other original projects of the Initiative grew, including the Community Conversations on Compassionate Care (CCCC), Medical Orders for Life-Sustaining Treatment (MOLST), and Community Principles of Pain Management. With the need to include resources for physicians, clinicians and other professionals, as well as implementation tools, the original website was revised and launched in July 2007 with support from the MSSNY-Excellus BCBS community initiatives fund. It served us well for over a decade and we’re proud to share the modern sites that we launched last week. Thank you to the patients, families and professionals who have been served by and contributed to the website’s success for the past 16 years.