The Serious Illness Care and MOLST Challenge
Helping adults live well with serious illness
Getting the care you want every step of the way
An individual who is seriously ill or frail can face difficult care decisions that may be confusing and worrisome. It's often hard to know how to get started to talk with your clinicians about your care goals, values and treament options.
Unfortunately, making complex care decisions and getting good care is made more difficult by our misaligned, at times dysfunctional serious illness care-MOLST process. Too often, patients do not receive timely, equitable, high quality care that honors each person's care choices.
This public health care crisis impacts thousands of Massachusetts adults and families everyday. Since 2013, Honoring Choices has been working diligently to understand our challenges and work collaboratively with key stakeholders to build an improved process to help individuals live well with serious illness.
What's the Challenge?
What's the Serious Illness Care and MOLST Challenge?
To build a collaborative process that responds to the changing health needs and care choices of seriously illness and frail adults, and delivers quality care from initial diagnosis, through managing treatment, to the end of life.
What is MOLST?
Massachusetts Medical Orders for Life-Sustaining Treatment, or MOLST, is both a form and a process. MOLST is a medical order (form) that a person with serious illness, their Agent and Guardian, can use with a treating clinician to discuss and write down the person's care choices and treatment preferences. The MOLST Process is how consumers and care providers engage in meaningful serious illness and MOLST discussions, and how care providers work together to know and honor patient choices as their health care needs and choices change. MOLST is also one of the 5 Massachusetts health care planning documents and works hand-in-hand with a Health Care Proxy and Personal Directive (Living Will). It is an important tool to communicate your care choices and safeguard your right to get the care you want and do not want.
What's been happening?
Here's quick review of key happenings to date:
• 2009: MOLST was introduced as a demonstration project and shortly after adopted statewide by the MA Department of Public Health. Read about our deep and rich history here.
• 2016: MA Department of Public Health appoints care professionals to a Palliative Care & Quality of Life Interdisciplinary Advisory Council or DPH Advisory Council, to advise the state on improving serious illness matters;
• 2017: Governor Baker announces Massachusetts (MA) is taking steps to join National POLST, a 47-state collaborative that follows a national standard for helping adults live well with serious illness and honor their care choices. National POLST provides states with evidence-based programs and educational materials to strengthen and coordinate our national response to serious illness care;
• 2018: MA MOLST Advisory Committee, a subcommittee of the DPH Advisory Council, expands to a 25 member multi-disciplinary work group to advise on a new MOLST form and process that brings us into compliance with the national standard and builds-in key education and oversight components for statewide implementation.
Helping adults live well in their community
Everyday the Honoring Choices Partners engage adults in serious illness discussions and document patient choices on a MOLST form (Medical Orders for Life-Sustaining Treatment.) The Partners know first-hand the complex issues individual's face in receiving timely, equitable care that honors their choices, and the unnecessary harm and suffering adults and families experience with our current process. Here are some of the problems reported by care providers and consumers:
- inaccurate or inadequate information to make informed care decisions;
- a lack of professional education for health care providers to engage patient in discussions;
- incorrect use of the MOLST form;
- inadequate systems to store, revise and retrieve MOLST forms to honor patient choices;
- a deep mis-alignment of standards of care, protocols and procedures across health care, community, and Probate & Family Court settings.
The Honoring Choices Partners are working together with state agencies, health care, community groups, and the court, to build a collaborative process that proactively responds to the changing health care needs and choices of adults with serious illness. An improved process will empower adults, families, Health Care Agents and Guardians to access needed treatment and coordinated care in their community, at every phase of health.
Exciting change is underway to build a collaborative serious illness and MOLST process!
Important Milestones: Building a Collborative Proces
UPDATE: MA Adopting National POLST & Process
I am delighted to share that the Executive Office of Health and Human Services (EOHHS) informed the DPH MA MOLST Advisory Subcommittee that they received the Subcommittee’s recommendation to adopt the National POLST form and process for use in Massachusetts, and as a result, is in process of developing a multi-year plan to move from MA MOLST to National POLST.
We are excited to join National POLST , a 43-state movement that has adopted a national standard of care for adults with serious illness. With their deep expertise and evidence-based materials, we can build an improved collaborative process that delivers quality person-directed care to adults with serious illness from first diagnosis, through managing treatments, to end of life. For the present, our MA MOLST form and process remains in place as the next phase begins to build a multi-year plan.
I join EOHHS in thanking the members of the MOLST Subcommittee for their invaluable work over the last two years, with guidance from the DPH Palliative Care & Quality of Life Interdisciplinary Advisory Council. I’d also like to thank the Guardianship-MOLST Advisory Committee, co-sponsored by Honoring Choices MA and MA Health & Hospital Association, working in tandem with the Subcommittee to safeguard the rights of individuals with serious illness under guardianship.
Additionally, my deepest gratitude to the hundreds of Honoring Choices Partners who sparked this process with the 2017 "MOLST Meeting the Challenge" statewide tour, and who have contributed to "Important Milestones" on this journey. Your first-hand knowledge of the real life challenges adults and families face, and suggestions for collaborative solutions, has been essential to the success of the MOLST Advisory Subcommittee's work.
We have received many questions about next steps, and dozens of offers to help contribute to the process. We have made note of all and thank you for your continued commitment and generosity. We'll keep you posted and look forward to engaging all your expertise in the next phase of implementation.
Ellen M. DiPaola, Esq. Chair, DPH MOLST Advisory Subcommittee
President & CEO, Honoring Choices MA
Excitng Progress: UPDATE on Improving the Serious Illness Care and MOLST Process
The MA MOLST Advisory Committee has put together a one-page update of major milestones this year and exciting next steps.
Read about the progress to come into compliance with the National POLST standard and improve our Serious Illness Care and MOLST process!
We are "In the Pink"!
National POLST has upgraded Massachusetts from "unaffiliated" to "active" status on its national map of state programs. That's a significant leap and recognizes the collaborative work to date to improve our MOLST form and process and come into compliance with the national POLST standard. It's a moment to thank the many state leaders, health care and community experts who have paved the way here. We stand on your shoulders and will respectfully build on your work. Read more about our rich history and current achievements in the "Important Milestones " timeline below.
See the POLST State Map here
DPH MA MOLST Advisory Committee recommends adoption of the national form
The 28 member MA MOLST Advisory Committee, a subcommittee of the Department of Public Health (DPH) Palliative Care & Quality of Life Interdisciplinary Advisory Council, has completed a comprehensive review of our rich history and our current problematic, often dysfunctional MOLST process. The MA MOLST Advisory Committee voted to recommend to DPH that we adopt the national form and process for use in Massachusetts, to be accompanied by a MA Implementation Guide that reflects our improved governing structure and key implementation components.
Once the new form is adopted, the Advisory Committee can get right to work on the implementation process to include:
- build-in a governing structure with professional training, consumer education, and quality control;
- align protocols & procedures under the new form across all health care, community & court settings;
- create a simple MA Implementation Guide.
Next Steps: The Department of Public Health is reviewing the MA MOLST Advisory Committee’s recommendation and will make a determination of adopting the national form and process shortly.
Read more- "A Game Changer for Living Well with Serious Illness" here
Just released: First National POLST form
The National POLST Paradigm announced the release of the first national POLST form and accompanying materials. Representatives of the 43-state POLST collective worked together to create the new form. The MA MOLST Advisory Committee contributed to several drafts of the new form, including the new and improved treatment decision sections. The national form will now be adopted by individual states. It's an exiting milestone for the country and will strengthen our national standard of care, create reciprocity across state lines, and provide states with standardized evidence-based tools, and key implementation components such as professional educational training, consumer education material, quality monitoring systems and much more. Next Step: the DPH MA MOLST Advisory Committee will re-convene to vote on possible adoption of the national form for use in Massachusetts.
Read more- "A Game Changer for Living Well with Serious Illness" here
NEW EMS Protocols : Authority of the Health Care Agent and others
There are two important changes to the Emergency Medical Services (EMS) Statewide Treatment Protocol 7.3 Medical Orders for Life Sustaining Treatment (MOLST) and Comfort Care/Do Not Resuscitate (DNR) Order Verification (CC/DNR:
- To provide for an exception allowing for box D of the MOLST form to be signed by an alternate person for patients located in the licensed health care facility. The health care facility assumes full responsibility for this signature documenting the authorization of the activated health care agent or guardian. EMS can assume the form is valid in these cases.
- To add a provision reflecting a health care agent’s and guardian’s legal authority under law, that no matter where EMS encounters a patient, if the patient’s lacks capacity/competency and the patient’s health care agent or guardian is on scene with his/her legal authorizing document in hand, the health care agent may change or revoke the patient’s existing MOLST form instructions.
The full protocols are posted at : https://www.mass.gov/lists/emergency-medical-services-statewide-treatment-protocols.
National POLST Education Committee meets to designs tools to share with all states
Ellen DiPaola, Esquire, a member of the National POLST Paradigm's Education Committee and Honoring Choices President & CEO, is working with multi-disciplinary care providers from across the country to build a more robust POLST/MOLST serious illness education program at a national level. The Education Committee will design a comprehensive program to include-
• A standardized set of free fact sheets, videos, webinars available to all MA patients and providers;
• Post serious illness resources from 45 states to share best practices and programs;
View and download the current National POLST Paradigm tools here.
MA MOLST Advisory Committee contributes to the new National POLST form
The National POLST Paradigm had an inspired idea .... to create one National POLST form, instead of 45 separate state forms, and set a national standard to understand and honor patient's care choices. Our 28 member MA MOLST Advisory Committee has been working diligently to contribute edits to several drafts of the proposed National POLST form. The final form is due in early September 2019. The MA MOLST Advisory Group will re-convene to review the final version and suggest next steps to the state. If adopted by Massachusetts, the new form will help to standardize and greatly improve our MOLST process for all stakeholders. The new national form will come with informational guides, evidence-based professional training resources and consumer educational materials. Keep you posted.
MA delgates attend the first National POLST Plenary Assembly Summit
Christine Michael, MA delegate to the National POLST Plenary Assembly and Executive Director of Hospice & Palliative Care Federation of MA, helped organize and attend the first national meeting of delegates from 45 states in Austin Texas. The Plenary Assembly set to work on crafting a national standard and national POLST form, being inclusive of their state specific issues and evidenced based objectives. Christine McMichael and Ellen DiPaola, Esq, President & CEO, Honoring Choices are the two MA delegates to the National POLST Plenary Assembly. They are working to bring evidenced-based programs and best practices to the Commonwealth.
NEW: Introduction to Guardianship Training for family members and guardians
The Massachusetts Guardianship Policy Institute established the Massachusetts Guardianship Academy to provide education, training, and support to guardians, volunteers, family and those in need of advance directives. The Academy has programs on the basics of guardianship; how to be a guardian; how to be a health care proxy and; the importance of advance directives. The Academy’s first trainings were for professional and lay guardians. In June 2019 the Academy began providing an Introduction to Guardianship Training to family members and recently appointed guardians in conjunction with the Volunteer Lawyers Project at the Suffolk Probate and Family Court. Training for the Plymouth Probate and Family Court Volunteer Lawyers Program began in September 2019. In October 2019 the Academy provided its first Introduction to Guardianship Training in Spanish that included an interpreter and translated materials at the Suffolk Probate and Family Court location. The Academy regularly hosts Guardianship Rounds to discuss where a complex guardianship cases. Future plans include providing additional language specific training for Probate and Family Courts in the Commonwealth as well online training modules and live streaming of educational events. For more information contact Traci Cucinotta, MBE, MSW, LICSW , Education and Training Specialist, Guardian Community Trust, 978.775.3500.
DPH AdvisoryCouncil recommends New MOLST Governing Structure and Key Program Components
We are on our way! The MA MOLST Advisory Committee provided it's "MA MOLST Program Key Elements & Standards Report" to the full DPH Advisory Council, which voted unanimously to recommend the report's adoption to the state. Lachlan Forrow, MD, DPH Advisory Council Chair (pictured here) made the official recommendation to Dr. Elizabeth Chen, then Associate DPH Commissioner, who responded favorable. It gives the MA MOLST Advisory Committee the green light to build an improved Serious Illness and MA MOLST Program governing structure to include key program elements such as:
• New MOLST form and process compliant with national standard;
• Unified regulations, policies & procedures for all stakeholders;
• Professional training and consumer education programs;
• Quality control and monitoring component.
Honoring Choices and MHA co-convene Guardianship-MOLST Advisory Group
• "Does a Guardian have the authority to sign a MOLST form?"
• "Does a family member of an incapacitated person (not a Health Care Agent or Guardian) in agreement with the treating physician's care plan, have the authority to make end of life care decisions?"
• "How does the court process empower Guardians to work with treating clinicians at first diagnosis through to end of life care, just as Health Care Agents do, to ensure the incapacitated adult receives timely quality care?"
These are just a few of the complex questions Honoring Choices Partners, hospital personnel and attorneys face everyday. We hear increased reports of incapacitated persons are being treated as "second class citizens" and experiencing inequitable care and unnecessary harm and suffering. To understand the issue and find solutions, Honoring Choices and the Massachusetts Health and Hospital Association have co-convened a 20 member Guardianship-MOLST Advisory Group. We hope to work with the Probate and Family Court to clarify the role of a Guardian in serious illness, and align the court's protocols and procedures with other key stakeholders such as hospitals, skilled nursing facilities, hospice and EMS protocols. Together we can work to ensure the incapacitated adult will have the same quality and timely care as adults with capacity.
View a list of the Guardianship-MOLST Advisory Group members.
The 28-member MOLST Advisory Committee gets to work!
The MA MOLST Advisory Committee expanded to bring in the expertise of a multi-disciplined health care providers and community professionals who represent a wide diversity of adults across the Commonwealth. Our charge from the MA Dept of Public Health is to help Massachusetts come into compliance with National POLST Paradigm standard, and to create a conversation-based, team approach process to help stakeholders across all care settings know and honor an adult's choices for care.
New Guide- "EMS & MOLST: 5 Things You Can Do Ahead of an Emergency"
The 5 MA Emergency Medical Services (EMS) Regional Directors worked closely with Honoring Choices to create 5 important things we can all do to help ensure a medical order is valid, visible and can be honored in a medical emergency.
Many thanks to 5 Regional EMS Directors who spoke with hundreds of care providers across the Commonwealth on the HCM MOLST Challenge Tour, in order to create this simple guide for high quality, smoother care transitions. The guide is posted on the Honoring Choices website.
NEW Tools: Honoring Choices introduces Palliative Care Discussion Guides
Doctors and care providers consistently agree starting a "MOLST discussion" with a patient at first diagnosis is a "best practice." The discussion allows patients to: 1. Understand their prognosis and treatment options to create goals of care; 2. make choices about life-sustaining treatments; and 3. explore palliative care to manage the pain, symptoms and stress of serious illness. Honoring Choices is pleased to offer our new Palliative Care webpage with two free, downloadable discussion guides:
• "5 Things To Talk About With Your Care Providers"; a handy guide for consumers; and
•"5 Things To Talk About With Your Patients & Clients"; a handy guide for providers.
Read More about Palliative Care Discussion Guides here.
The Probate & Family Court: A Key Stakeholder in the MOLST Process
On June 8, Honoring Choices was invited to Guardianship Committee of the Probate and Family Court, to provide a update on MOLST. Ellen M. DiPaola, Esq., President & CEO, provided a status report to the Guardianship Committee's Judges and Assistant Judicial Case Managers who oversee guardianship petitions and a guardian's request for permission to sign a MOLST form. The court is considered "a major stakeholder" in helping to safeguard and improve the serious illness journey for an incapacitated person, and to support a Guardian's role/responsibility to protect the rights of an incapacitated person and provide for essential care. We had a thoughtful discussion regarding the opportunity to improve the MOLST form, and align court protocols and procedures with fellow medical and community care stakeholders. We agreed an Honoring Choices Work Group will be formed to explore the Committee's suggestions and report back for further discussion.
Govenor Baker's office announces MA to Join the National POLST Paradigm
The Massachusetts Department of Public Health, who oversees the MOLST process, is taking steps to join the national patient-directed serious illness initiative. The National POLST Paradigm was established in 2004 to establish national quality standards for POLST / MOLST Paradigm Programs, and to assist states in developing their programs. They have a extensive website of evidence based research, webinars, tool kits and more. Joining National POLST will offer Massachusetts a well-established, evidence based model to consider for crafting our state program. Secretary Alice Bonner, MA Executive Office of Elder Affairs announced the news at the May 9 MA Coalition for Serious Illness Care's Annual Meeting.
Read more about National POLST Paradigm
To Access Tool Kits and Webinars. Click Here
Honoring Choices kicks-off the "MOLST Meeting the Challenge Tour"
Over 100 multi-disciplined care providers and professionals came together for the first-ever unique forum to hear a dynamic panel discussion and lend their expertise to crafting a more responsive and aligned MOLST process. The Massachusetts Medical Society co-hosted our inaugural Metrowest-Boston and North Shore Workshop to open a state-wide dialogue about understanding the complex issues and building a better process. The MOLST Challenge Tour will host workshops in all of the 6 Honoring Choices Regional Networks. Each workshop assembles a panel of local experts including the regional EMS Director.
Cape Cod Hospital hosts "MOLST: Meeting the Challenge Workshop"
Our second in the series of MOLST Workshops took place at Cape Cod Hospital with a diverse group of care providers from its 62 Member Task Force to discuss both statewide and regional challenges. The panel members and care providers focused on the unique challenge of crafting a coordinated regional response Cape-wide for assisting a large year-round elder population and seasonal residents who may not have their medical documents in-hand. Each task force member represents a local care setting on the Cape. Together they are a dynamic movement for crafting sustainable change for a responsive MOLST process in their region. "Outcomes Report" to follow.
Baystate Health hosts Holyoke/ Springfield's "MOLST: Meeting the Challenge Workshop"
Care providers in the Holyoke, Springfield and Western Massachusetts regions attended the MOLST: Meeting the Challenge Workshop at the Baystate Health Education Center, 361 Whitney Avenue, Holyoke. The third in our series of MOLST Workshops was generously hosted by Honoring Choices Alliance Partner, Western MA Transitions in Care Cross Continuum, sponsored by Baystate Health.
UMass Memorial Medical Center hosts Worcester. MOLST: Meeting the Challenge Workshop
All care providers in the Worcester and Central Massachusetts region came together to exchange ideas with this dynamic panel (pictured here), for a MOLST: Meeting the Challenge Workshop at the First Unitarian Church of Worcester. This is the fourth in our series of MOLST Workshops.
Hawthrone Medical Center hosts South Shore MOLST: Meeting the Challenge Workshop
Over 65 interdisciplinary care providers from the Dartmouth, New Bedford, Fall River and and South Shore region attended the MOLST: Meeting the Challenge Workshop at the Hawthorne Medical Center, Dartmouth. This is the fifth in the series of MOLST Workshops.
MA Coalition for Serious Illness Care
The mission of the Massachusetts Coalition for Serious Illness Care (Coalition) is to ensure that health care for everyone in Massachusetts is in accordance with their goals, values, and preferences at all stages of life and in all steps of their care. The Coalition has established six core priorities including: naming a Health Care Agent; talking with your agent, family, and providers about care goals, values, and choices; providing the necessary training for clinicians; and building effective systems to ensure individual preferences and choices can be documented, shared, and honored in every care setting. More than ninety Massachusetts-based organizations form the Coalition and are working on shared goals to support the Coalition’s mission. In 2016, the Coalition fielded the first of a regular series of surveys measuring Massachusetts residents’ views on serious illness and end-of-life care. The Coalition hosts an annual spring summit each year open to all. Learn more, and become a member.
Rich History of MOLST Implemenation
Many hundreds of professionals have brought us to where we are today. They were and still are the guiding stewards of this process and we gratefully stand on their shoulders to continue their work. The MA MOLST website has the following summary of our rich and deep history.
2008 - MA legislature enacts Chapter 305 of the Acts of 2008, Sections 41–43 to require the establishment of a MA MOLST demonstration program in at least one area of the Commonwealth.
2009 - MOLST Demonstration planning begins. The greater Worcester area is selected for the demonstration due to its size, number and diversity of health care providers, and ongoing community-based efforts to improve end of life care.
2010 - In February, MA DPH Circular Letter: DHCQ 10-02-529 supports MOLST use to meet the “standard of care for communicating patient preferences regarding life-sustaining treatment options.”
2010 - In April, the MOLST Demonstration program is implemented involving two acute care hospitals; five skilled nursing facilities, home health and hospice providers; one primary care home-visiting program; and regional emergency medical services.
2010 - The Massachusetts Expert Panel on End-of-Life Care Report recommends that "full statewide implementation of MOLST should be achieved no later than January 1, 2014."
2011 - MOLST Demonstration Report recommends statewide expansion of MOLST, stating that, "as a result of the overwhelmingly positive findings from the MOLST Demonstration Program, the MOLST Steering Committee holds the vision that in Massachusetts: 1. Every suitable patient will be offered the opportunity to utilize a MOLST form in concert with that patient’s clinician to communicate life sustaining treatment preferences across health care settings; 2. Every emergency medical technician will receive MOLST training and be authorized to honor valid MOLST forms; 3. Every major hospital system and health care plan will implement policies and procedures to facilitate the appropriate utilization of MOLST by clinicians and patients; 4. Every clinician will seek to improve communications skills with patients nearing the end of life; have access to MOLST education; and be encouraged by professional organizations and regulatory bodies (e.g. Boards of Registration, Massachusetts Medical Society) to utilize MOLST correctly; and 5. MOLST forms as well as education and outreach materials will be uniform; linguistically appropriate; culturally relevant; easily available; accessible to persons with disabilities; and recognized by health professionals and consumers alike."
2012- The MOLST Committee provides education, support and professional training.
2014 - MOLST form in use in clinical care institutions statewide. Read the April 2014 report, MOLST Statewide Expansion Evaluation Findings.
2014- The MOLST Committee is disbanded. Effective July 1, 2014 the MOLST Project will transition to the MA Department of Public Health.