Some hospitals are wary about allowing peer-to-peer organizations such as Mended Hearts and Mended Little Hearts to interact with patients in any way. Others accept the delivery of educational brochures or Bravery Bags but don’t allow visiting programs. Many fully support MH/MLH programs but do not go the extra mile to maximize the benefit of having a chapter or group at their facility.
Then there are the love stories.
There are chapters and hospitals that work together so seamlessly, they are able to do things like raise money to place life-saving automated external defibrillators (AEDs) in their communities, which is happening with Chapter 127 in Cookeville, Tenn., and Chapter 28 of Central Virginia. Others, like Chapter 161 in Hollywood, Fla., collaborate with their hospital to create comprehensive cardiac surgery discharge classes. Still others, including the hospital that works with Mended Little Hearts of Greater Rochester, have hosted annual celebrations for 500 families and staff members.
They’re the kind of hospital relationships that make Mended Hearts and Mended Little Hearts leaders say things like: “Is there such a thing as a perfect world? Of course not, but the relationship between our hospital and our chapter is the closest you’ll find.” That’s what Marvin Keyser, President of Chapter 161 and Assistant Regional Director of MH Southern Region said about Memorial Regional Hospital in South Florida. And Blanche Smithers, President of Chapter 127, has this to say about Cookeville Regional Medical Center: “I just cannot say enough good things about our hospital. We continuously talk about how good they are to us.”
We talked to these leaders about how chapters and groups around the country can reach that level of bliss with their local hospitals. Here are their best tips.
If you do not yet have a relationship with your local hospital or are trying to start a visiting program, find a hospital staff member who can act as your advocate. Jodi Lemacks, Mended Little Hearts National Program Director, says, “Figure out who you need to talk to and just go sit down with them, maybe bring them some food. You have to have a contact who will be your champion at the hospital. Let them know what we can and can’t provide and reassure them that we don’t compare facilities, and we don’t give medical advice. We’re only there to be a positive presence to the families.”
Christine Delaughter, Director of Volunteer Services at Bon Secours St. Mary’s Hospital in Richmond, Va., suggests approaching the hospital’s volunteer services department to learn more about the requirements of volunteering at that specific hospital. She agrees with Lemacks and says, “It’s critical that Mended Hearts identifies who in their hospital will be their champion, whether it’s the volunteer services department, the cardiac surgeons, or the cardiac care staff.”
Sometimes, you may have to wait a while for the right champion to come along. When Chapter 380 in Boise, Idaho, was forming, its leaders hoped to serve two hospital systems in the area: St. Luke’s and St. Alphonsus. St. Luke’s welcomed Chapter 380, but a cardiologist at St. Alphonsus wasn’t so accepting. He preferred to have a chapter that exclusively served that hospital. When the cardiologist left St. Alphonsus, another leader there — the Vice President of Heart & Vascular Services — asked Chapter 380 members if they would be willing to serve St. Alphonsus patients.
“Of course we said ‘of course,’” says Elaine Grossaint, Visiting Chair for the chapter. “We want to be inclusive of all hospitals if we can.” In October 2015, Chapter 380 members began visiting patients twice a week at St. Alphonsus.
Grossaint says that even before Mended Hearts started visiting at St. Alphonsus, her chapter tried to include leaders from that hospital in various events and educational sessions. For instance, earlier in 2015, the chapter hosted a community-wide lecture about congestive heart failure and invited medical professionals from both St. Luke’s and St. Alphonsus to speak. “It was a feather in our cap to bring together the two hospitals because that doesn’t often happen,” Grossaint says. “It was a big statement for us to say we’re not affiliated with either hospital, we’re affiliated with Mended Hearts, and we think both of you have great professionals.”
Between October 2015 and December 2015, visitors touched the lives of 211 heart patients at St. Alphonsus, by either visiting with them or leaving behind Mended Hearts materials.
The relationship has been going so well that Chapter 380, along with the burgeoning Mended Little Hearts group in Boise, participated in a holiday fundraiser for St. Alphonsus. The two groups decorated a Christmas tree for the hospital’s Festival of Trees event, with the trees being auctioned off and proceeds going to St. Alphonsus. The Vice President of Heart & Vascular Services won the Mended Hearts tree and displayed it throughout the holidays on one of the cardiology floors at the hospital.
It can be difficult to be patient when you know that there are patients and families who could benefit from MH and MLH, but setting up a visiting program or expanding your chapter’s services in a hospital can take time. Don’t get discouraged.
Scott Eitman, President of Chapter 138 in Cleveland, says after a nurse at the Cleveland Clinic began advocating for a MH chapter, it took her eight to 10 years to get a trial run approved. That was 1986. They have been working with the hospital ever since.
It took MLH of Rochester two years to get brochures placed in all of the hospital’s patient rooms. “It’s baby steps,” says chapter founder Jennifer Kowal. “You can’t just go in thinking you’re going to have a full program and an office in the hospital. You have to ease into it.”
MLH of Cincinnati has faced similar delays. Leslie Sams, who is both Co-coordinator for MLH of Cincinnati and Assistant Regional Director of MLH’s Central Region, says, “We’ve been working with our hospital for five years, and we’ve just now gotten our foot in the door to have an official visiting program. A huge key is to be patient and persistent. It takes time, especially with children’s hospitals. There are a lot of restrictions — for good reason.”
Flexibility is as important as patience. “Even if they just let you provide coffee to families and they’ll promote it, that’s a start,” Lemacks says. “If you help one family, that’s a big deal to that family.”
Behind every successful chapter-hospital collaboration are strong personal relationships. Marvin Keyser, Assistant Regional Director of the Mended Hearts Southern Region and President of Chapter 161 in Hollywood, Fla., says, “Relationships really matter. Become a friend. This is really not a business.” The relationships he has helped to build at Memorial Regional Hospital in South Florida led to the creation of a cardiac surgery discharge class. Members of Chapter 161 and nurses teach the class together.
Get staff members involved when you can. According to Al Malick, Visiting Chair of Chapter 309 in Concord, Calif., at least three hospital staff nurses serve as MH officers and participate in meetings. That kind of involvement isn’t unusual among successful chapters and hospital staff.
Sams has found that inviting key staff members to come speak at meetings helps. “It gives them a chance to see our group, to talk to us more, and understand what we’re all about. One of our heart surgeons who is also on the executive committee came to speak to our group, and now he’s 100 percent supportive. It gives them a chance to get to know us better. Using educational programs for that really works.”
Everyone loves to feel appreciated, and your hospital’s staff is no different. Show them how much your chapter values their work with gestures such as cookies on holidays or flowers when they’ve gone above and beyond. Chapter 184 in Cedar Rapids, Iowa, for example, provides nurses with flashlight pens that feature the chapter’s name and contact information. Even more effective are the more than 5,000 heart-shaped pillows they have created and delivered to bypass patients during the last 18 years.
Another way to show your appreciation is to, as Sams says, “find a way that you, as individuals and as a group, can be an asset to the hospital. We want to be a program that benefits not only the families we serve but also the staff.” To that end, members of her chapter serve on the Family Advisory Council for their heart institute and volunteer their time for quality-improvement projects at the hospital. “It shows them that we’re there for them too and has really built those relationships,” she says.
There are a number of reasons hospitals may be hesitant to allow peer-to-peer groups into their facilities: concerns about privacy, worries over the accuracy of information and bad experiences with unreliable groups.
“The truth is, there are some parent-to-parent support groups out there that do things that justifiably cause hospitals concern.” Lemacks says. “I think one of the biggest benefits of Mended Little Hearts is we do have policies and procedures in place. If we hear of a problem, we address it right away. People can have confidence in our brand. There are hospitals that have definitely gotten burned by a lack of professionalism, and it hurts everyone when this happens.”
Helping hospitals better understand the accreditation process may diminish some concerns, suggests Malick: “Help not just the administrators but even the staff understand how MH actually works and what the visiting accreditation process is to give the whole thing a sense of professionalism and legitimacy that they may not be aware of.”
Harry Bowers, president of Chapter 309 in Walnut Creek, Calif., encourages a proactive approach to address privacy concerns. “We do our re-accreditation for visitors every year,” he says. “I specify that they are now HIPAA trained, and then I make sure our hospital’s chief administrative officer has a copy of that list on his desk, so he knows we’re following HIPAA rules.”
Leonard Amendola, who heads up the visiting program at St. Mary’s Hospital in Virginia, says, “The key to success in any hospital is to understand that Mended Hearts is there as a visitor and as a guest of the hospital. It’s their hospital; they call the shots.” Whether it’s getting annual flu shots, undergoing additional hospital-specific training, or wearing a badge, he says respecting the facilities’ regulations is vital.
Delaughter, a staff member at the same hospital, advises MH representatives to “understand that policies and procedures are in place to ensure the highest level of safe and competent care for every patient. They deserve our best at every encounter, including the encounter they have with a MH visitor. Be willing to follow policy and procedures, and understand that if they change, it’s important to adapt to those changes. Be proactive in keeping chapter members current on any changes or updates that may affect them. Keep an open, positive line of communication.”
Working well with your local hospital has all sorts of advantages. Blanche Smithers, President of Chapter 127 in Cookeville, Tenn., can read off an extensive list of things that Hospital of the Year winner Cookeville Regional Medical Center does to support her chapter, but she is most proud of the bake sale and silent auction it hosts to raise money for the chapter’s AED program. “We have given away more than 135 AEDs, which cost us $1,300 each. It’s quite an achievement,” she says. (This past December, an AED from a similar program in Central Virginia saved a life at Bon Secours St. Mary’s Hospital.)
In the end, it is the heart patients themselves who benefit most when MH/ MLH and hospitals cooperate. “The visiting volunteers are role models to our patients and families,” says Delaughter, of St. Mary’s Hospital. “They can be the hope that patients and families need in the midst of what may be a life-threatening crisis. They are the only people who really understand what a patient or caregiver is experiencing. When I see a red Mended Hearts vest, I see a heart angel walking among us.”