Report on the Massachusetts Serious Illness Coalition

The MA Serious Illness Coalition pushes to bring awareness and focus on end-of-life issues.

“It is my goal that every nursing school in MA embrace that a nursing student must see a dying patient with the same fervor that they embrace that every nurse must see a baby being born.”
— Susan Lysaght Hurley, PhD, RN
Director of Research, Care Dimensions, Inc

Last week, the Massachusetts Serious Illness Coalition hosted its annual meeting welcoming more than 100 attendees to the JFK Library in Boston. The message from the Coalition’s leadership – as articulated by Blue Cross Blue Shield MA President and CEO – is that “the momentum is building.” From the Coalition’s beginnings less than five years ago, Dreyfus has focused on a long-term strategy to achieve the Coalition’s six goals. These include the ideas that everyone in Massachusetts 18 years or older has a designated health care decision-maker and that all Massachusetts clinicians have appropriate training to communicate comfortably with patients around advanced care planning and serious illness. Dreyfus has likened the work to that done in years past on smoking and on car seats, where steady force and public messaging achieved near-universal changes in public thinking.

The progress on clinician education – from a provider association perspective – is perhaps the most engaging and encouraging news. Dr Atul Gwande, as eloquent as ever, declared that the work to date has shown that: “People have priorities in life beyond just surviving, but you must ask them. Suffering happens when care doesn’t match our priorities.”

In addition to a public education campaign about engaging in advanced care planning conversations, Dr. Gwande announced that the Coalition is in talks with all four Massachusetts medical schools about a cooperative effort to require training of med students in serious illness communication as a graduation requirement.

But it was Dr, Hurley’s remarks that struck home for the home health and hospice agencies in the Coalition. In addition to the above comment, Dr. Hurley spoke of being a young nurse “totally unprepared as to how to talk to the dying.” Along with her subcommittee co-chair Anne Marie Barron of Simmons College, she is working on recommendations on core competencies for nursing education related to serious illness care. These are to be presented in the near future to the Massachusetts Association of Colleges of Nursing. What a great achievement that would be!

For those following the Coalition’s work, these may also be of interest:

  1. End Games, an Academy Award-nominated short documentary on hospice and palliative care executive produced by Shoshana Ungerleider, MD. It premiered at Sundance Film Festival in 2018 and was acquired by Netflix.

2. The Coalition’s public message research and draft public facing marketing approaches.

Commendable progress!

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Guest Post: Making the MOLST of Your Life

By: Jeanne M. Ryan, MA, OTR, MBA, CHCE
Executive Director VNA & Hospice of Cooley Dickinson

According to the Massachusetts Expert Panel on End-of-Life Care:

“What people want and need as the end of life approaches are things that have mattered to them throughout life, often now more intensely then ever: that their wishes and values are respected, that their symptoms are well controlled; that their dignity is maintained; and that they can spend as much meaningful time as possible with those they most love”.

And while 70 percent of Americans say they wish to die at home, surrounded by family, in Massachusetts the reality is exactly reversed: More than 70 percent die in hospitals or nursing homes, often spending their last days or weeks attached to high-tech life support machines. The choices that patients and their families make about care at this stage of life are extremely personal, but can only be made well if the full range of options is presented, explored, and considered with each patient individually. Continue reading “Guest Post: Making the MOLST of Your Life”

Comments Sought on Palliative Care/EOL Education Regulations

The MA Department of Public Health recently released a set of draft regulations relative to a new requirement that – effective next year – will require  hospitals and skilled nursing facilities to distribute information on palliative care and end of life care. Under the draft regulations, the facilities will be required:

    1. Have a process to identify appropriate patients
    2. Ensure that appropriate patients receive information
    3. Distribute information about hospice and palliative care in a timely manner

Some HCA members have reviewed these draft regulations and believe that the draft definitions do not make a clear enough distinction between palliative care and hospice care almost using the terms interchangeably.  There will be a public hearing on these rules in Boston on Nov 21st  at 2 PM in the Public Health Council Room, Second Floor, Department of Public Health, 250 Washington Street, Boston.

The Alliance will be providing comments and encourages other members to do so, either in person or in writing. Electronic or written testimony can be submitted  to:   as an attached Word document or as text within the body of an email and type “End-of-Life” in the subject line.   All submissions must include the sender’s full name and address.  The Department will post all electronic testimony that complies with these instructions on its website  All testimony must be submitted by 5:00 p.m. on November 22, 2013.

Members are encouraged to also provide feedback to the Alliance for our testimony as well.

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