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!

Return to www.thinkhomecare.org.

The New ThinkHomeCare.org

The Alliance is extremely pleased to announce the first re-launch of its website in nearly five years.

Screenshot of the new design.

Design & Home Page Changes

  • A clean, responsive design that works both for desktop and mobile platforms;
  • Member sign-on available directly on the home page and many sub-pages; and
  • New red button highlights and a simplified navigation menu to direct members & non-members alike to topics of interest.

Function & Enhancements

  • A new Education Page with categories that that filter for the events you’re looking for;
  • An overhauled Association Store with better categories and clearer organization;
  • A brand-new Library of Recorded Webinars, some available for purchase (at reduced rates for members), some available at no charge;
  • A redesigned Find-an-Agency search helps families find services that meets their needs; and
  • A new, members-only page listing money-saving Group Purchase Programs available through the Alliance.

As with all websites, we’ll continue to make changes and enhancements over the coming weeks and months. If you have any problems or suggestions, please contact me at tmeyer@thinkhomecare.org.

Return to www.thinkhomecare.org.

How CMS Stole Home Care Christmas!

Every person in Home Care liked caring a lot.
But the Grinches south of Baltimore, they surely did not!
The Grinches hated home care, delivered in any which way.
Now, please don’t ask why. No one knows what to say.

It could be CMS didn’t have a mom or a dad.
It could be their jobs were incredibly sad.
But, the most likely reason was this just this my dear,
Their hearts were hijacked by nasty old fear.

They feared the support, the need and the caring.
“It has to stop now,” they said, nostrils flaring!
“I hate all their teamwork! I despise all they do!
I’ll pick them all off, one-by-one, two-by-two!”

With a laugh and snort, they sneered, “I know just what to do!”
And put pen to paper to plot their evil, awful coup.
They threw it all at us, with the usual glee,
COPs, OASIS changes, and even VBP!
“I’ve ruined them now and forever, I swear,
Let’s see how you cope, how you can possibly still care!”

But across the Land of Home Care, they got down to work.
HCA had their back, a membership perk!
Every worker in home care, the small and the tall,
Still kept making visits, swearing once and for all:
“The families, they need us, and we will be there!
No Grinches in DC can stop us with fear.”

And what happened then? Well… in home they say,
Those Grinches’ hearts grew three sizes that day!
The true meaning of home care shined right on through.
They ripped up their papers, stopped pre-claim review.
“Maybe home care,” they said, “isn’t about regs, or rules.
Maybe home care is bigger, a national jewel!”

“Thank you, home care,” they said, now with a smile.
“For once, in your shoes, maybe I’ll walk a mile.
I’ll make a home visit, I’ll assist with a med.
I’ll listen to stories from clients in bed.”

“I’ve a new understanding why you do what you do.
Let’s make a new year that’s bright with a start that’s brand new!”

Return to www.thinkhomecare.org.

Statement on Boston Globe Article: A Stranger in the House

Boston, MA – The Home Care Alliance of Massachusetts issued the following statement in response to the two-part Boston Globe article titled “A Stranger in the House” printed September 16th and 17th:

The Home Care Alliance and its members have a zero-tolerance policy when it comes to patient abuse. Over many years we have worked with the Department of Public Health, Elder Affairs and Health and Human services to address issues of elder abuse and billing fraud. Our members take very seriously the responsibility of ensuring the safety and quality of care being delivered to their clients.

These Boston Globe articles confusingly lump three different classes of workers together: personal care attendants employed directly by consumers in the PCA program, aides hired through a home care agency, and workers hired directly by consumers in the underground marketplace.

While the article cites 20 cases of agency-hired workers committing abhorrent crimes in ‘recent years,’ it fails to contextualize the fact that home care agencies have employed over 75,000 workers and delivered care to more than 600,000 elders in the past five years.

We have long advocated for the Commonwealth to develop a licensure process and we support state legislation (H.344) which we believe would enact baseline consumer protection standards for private pay home care agencies. We also advocated for recently enacted legislation to license certified home health agencies.

In failing to adequately explain the structure of the home care system in Massachusetts, readers are left confused and scared. At a time when aging-in-place is a statewide priority, we should be working on solutions that expand access to these services and protects consumers in the setting that they prefer: home.

About the Home Care Alliance of Massachusetts:

With a mission to unite people and organizations to advance community health through care and services in the home, the Home Care Alliance of Massachusetts is a non-profit trade association and advocacy group providing representation, education, communication, advocacy and – ultimately – a voice for the state’s home health industry. Founded in 1969, the Alliance has grown to represent more than 160 home care and home health agencies across the state. For more information, visit www.thinkhomecare.org.

State Palliative Care Report Published, Work Group Seeks New Members

Last year, the state of Massachusetts’ Palliative Care Work Group commissioned the JSI Research & Training Institute to conduct a statewide and regional assessment on palliative care. In addition to reviewing the quality of palliative care in various settings, the report examined both accessibility and the factors that affect it. The work group, which is housed in MA Department of Public Health’s Comprehensive Cancer and Prevention Control Network, recently published the report. It examines availability of various models of care (e.g., hospital vs community-based), and the intersection of access and reimbursement, as well as public misconceptions and the need for more education. The report looks at access to care on a regional basis and includes an interactive map of identified palliative care services.

Screenshot of the report’s interactive map.

HCA of MA has also identified distinct palliative care programs on our consumer pages. Our online directory now includes a specific category for palliative care, and lists a total of eleven agencies that responded with information about palliative care to our recent survey.

As this work progresses, the state’s Palliative Care Work Group is looking for additional members to help provide consistent messaging about palliative care across the state. The next Work Group meeting will be Thursday, October 19, 2017, 11 AM – 1 PM at the American Cancer Society in Framingham.

Please email Colleen Bayard, cbayard@thinkhomecare.org if you would like to join the work group.

Return to www.thinkhomecare.org.

Portraits of CareGiving – Enter Now!

To celebrate November as National Home  Care Month, the Home Care Alliance wants to put your picture up in the MA Statehouse!   So get out your iPhones and even — if you’d like — your selfie sticks, and send us a photograph of a day or a moment in your home care life!  The photographs will hang the first week in November,  and we hope they will tell in pictures a story of what you do every day across the entire Commonwealth to support those who are often invisible to elected officials and other parts of the health care system.

So get creative with it and let us show them what you do!

Find all of the details here.

Return to www.thinkhomecare.org.

Skilled Nursing Campaign Garners Media Attention

This week, the Alliance’s parent-provider skilled nursing campaign received national media coverage. The campaign seeks higher reimbursement rates from MassHealth for continuous skilled nursing services. Currently, agencies are unable to compete for nurses with area hospitals, and has led to a 37% nurse turnover rate, and nearly 24% of MassHealth-Authorized service hours going unfilled.

On Sunday, The Boston Globe featured a front-page story into the life of one of the parents caring for a child in the Massachusetts Continuous Skilled Nursing Program. Noelia Ferreira has gone over 100 days without a skilled nurse coming to her home to care for her daughter Abi. The article beautifully explains Noelia’s struggles to find adequate care and her commitment to keeping Abi safe at home.

As a result of this front page feature, WGBH invited Noelia and MA Pediatric Home Nursing Care Campaign founder, Angela Ortiz, to be interviewed by host, Jim Braude. Footage of the interview can be viewed here.

The campaign is leveraging this exposure to raise awareness and momentum in our fight for adequate reimbursement rates. Please visit www.mychildcantwait.com to write or call Governor Baker urging action.