A new voluntary program in Massachusetts that facilitates discussion, planning, coordinating patients’ end-of-life decisions
Many believe that the American death-denying culture inhibits achieving the best health care for those approaching the end of life. Ellen Goodman, working with The Institute for Healthcare Improvement, has kicked off a national initiative called The Conversation Project in an attempt to promote conversations about death and dying in order to narrow the gap between what people say they want as they face death and what really happens (1).
The goals of The Conversation Project are enabled and advanced by MOLST (Medical Orders for End of Life-Sustaining Treatment), a Massachusetts program designed to assure that each person’s end-of-life preferences are expressed and can be honored across all medical settings. MOLST statewide expansion started on April 1, 2012.
A person born in Massachusetts in 2008 has an average life expectancy of 80.4 years (2), 35 years more than a person born in 1900 when the average life expectancy was 45. Before antibiotics, people tended to die quickly, either of infectious diseases or accidents. Today, only a small fraction of the population dies suddenly.
By dramatically increasing life expectancy, modern medicine has changed what we die from and what we live with before we die. Individuals live longer but often develop chronic, life-threatening illnesses. Notwithstanding medical advances, everyone remains mortal. Doctors have a range of options that can prolong the dying process but “[i]n the course of a progressive illness, there almost always comes a point when more treatment is not better care” (3).
Approximately 53,000 people die each year in Massachusetts; the largest number of deaths is among people age 85 or older and almost 80% of all the people who die are at least 65. These deaths touch friends and families deeply but most are not unexpected. Patients have typically received care from many caregivers, often in multiple treatment settings, for many years. It is not unusual to have little coordination between the patient’s clinicians, little discussion with the patient about the patient’s prognosis, and little planning with respect to the patient’s goals for care. Families confront a barrage of medical decisions with little context and great uncertainty about what their loved one would want.
MOLST is a standardized form that translates a seriously ill patient’s preferences into valid medical orders that can be honored by all health care professionals across care settings, whether in the home, hospital, nursing home, rehabilitation facility, hospice, or in transfer by ambulance when emergency medical personnel are called.
MOLST is one possible outcome of ongoing, advance-care planning discussions between a patient and the patient’s health care providers and loved ones. Completing a MOLST form is voluntary. MOLST is suitable for patients of any age with advanced illness including, but not limited to: life-threatening disease; chronic progressive disease; dementia; life-threatening injury; or medical frailty. MOLST instructions are effective immediately and reflect the patient’s current health status and preferences.
When approaching the end of life, MOLST can be more effective than a living will or other expression of final medical wishes. Since there is no statute in Massachusetts that expressly authorizes living wills or other expressions of final wishes, such documents can serve as evidence of a person’s wishes, but have no particular legal authority. A MOLST form contains valid medical orders that are effective immediately and can be honored by health care providers in any setting.
MOLST does not change the need for health care proxy. All adults (age 18 and over) in Massachusetts should complete a health care proxy form to appoint a health care agent who is authorized to make health care decisions on their behalf in the future should they become incapacitated. While it may seem self-evident that seriously ill patients would benefit if medical orders could be honored by all medical personnel across care settings, unfortunately, that is not how the current system works. Typically, clinicians only honor orders written by other clinicians working at the same institution. Without express authorization not to administer cardiopulmonary resuscitation (CPR) on the Comfort Care/ Do Not Resuscitate Verification Protocol (CC/DNR) form created by the Department of Public Health’s Office of Emergency Medical Services (OEMS), emergency responders have been required to attempt CPR. Under current guidance from the OEMS, emergency responders can honor either a MOLST form or a CC/DNR form.
MOLST represents a standard of practice with respect to documenting and communicating patient preferences for care at the end of life. MOLST builds on and enhances CC/DNR because it (a) can be honored by all clinicians across treatment settings (not just emergency responders), (b) includes the option of refusing or requesting treatment, and (c) creates valid medical orders about CPR, intubation/ventilation and transfer to a hospital. MOLST also serves as a communication tool to facilitate expression of a patient’s other preferences by indicating the extent of the discussions that have occurred. This allows clinicians to continue conversations that were started earlier.
MOLST was first authorized in Massachusetts under Chapter 305, Section 43 of the Acts of 2008. That legislation directed the Executive Office of Health and Human Services (EOHHS) to test implementation of a physician order for life-sustaining treatment paradigm program (see www.polst.org) to assist individuals in communicating end-of-life care directives across care settings in at least one region of the Commonwealth and to make recommendations for establishment of a statewide program. Clinical practice settings in the Greater Worcester area were selected as demonstration sites for implementation of MOLST. Based on the demonstration project, an initial cohort of Massachusetts hospitals and nursing homes are currently engaged in training and preparation to proceed with the steps required to implement MOLST. These steps include recruiting clinical champions, revising institutional policies and procedures to incorporate MOLST, and the challenges of training staff. Key findings developed during the demonstration project and the expansion recommendations are contained in a report available on the EOHHS website.
Statewide MOLST expansion has been endorsed by the Board of Registration in Medicine (and the Boards of Registration for nurses, nurse practitioners, and physician assistants), the Massachusetts Medical Society, and the Massachusetts Expert Panel on End of Life Care, and many institutions have expressed interest in participating in MOLST training. Current efforts are under way to scale up to be able to respond to all of the requests for training and individualized coaching. In addition, efforts are needed to assure that clinicians who feel ill-equipped or uncomfortable with discussions about end-of-life health care options can get support and training. Public outreach efforts also are being planned since MOLST can satisfy the desire of many patients and families to control the treatment that they receive at the end of life. However, there is a great concern that clinical systems be given time to prepare in order to be able to adequately respond to patient demand.
A seasoned attorney and health care consultant, the author was an adjunct lecturer in the Management and Accounting and Law divisions at Babson College.
For more information about MOLST, visit www.molst-ma.gov.
1. Ellen Goodman, “Die the Way You Want To,” The Harvard Business Review, January– February 2012, accessed September 17, 2012, http://hbr.org/2012/01/tackling-social-problems/ar/1 .
2. “Massachusetts Deaths 2008,” Division of Research and Epidemiology, Bureau of Health Information Statistics, Research and Evaluation, Massachusetts Department of Public Health, accessed September 17, 2012, http://www.mass.gov/eohhs/docs/dph/research-epi/death-report-08.pdf .
3. Ira Byock, MD, “Moving Away from Death Panels: Health Reform for the Way We Die,” The Atlantic, March 6, 2012, accessed September 17, 2012, http://www.theatlantic.com/health/archive/2012/03/moving-away-from-death-panels-health-reform-for-the-way-we-die/253683/.