Patient Wishes: Making the Most of Every Moment

They both grew up in South Dakota but lived in different towns. When they finally met as students at the University of South Dakota – he was studying business while she was studying education – he remembered her being “so dang popular” that he hesitated in asking her out.

That was nearly 50 years ago, when Dan Shaheen never could have predicted all the joy which that engaging college student would give him over a lifetime of mutual sharing and caring. And then the bitter pill to swallow: dementia that enveloped Rita over the last few years, to a point where she has trouble with walking, talking, reading and other daily affairs of living. They eventually moved her into Clark Retirement at Franklin in January 2023 for additional support.

They’d both enjoyed successful careers – Rita as a special education instructor mostly with Forest Hills schools. She retired in 2017 and the medical journey began shortly after that. Dan served as a vice president for Meijer, Inc. until retiring early in 2011, then worked part time several years delivering flowers.

He was skeptical about considering hospice care for Rita until a few months ago, when a doctor asked what he wanted for his wife.

“To keep her comfortable, out of the hospital and receiving the best care possible,” he answered.

In that moment, it was clear: Hospice would serve as a gift.

They chose Emmanuel Hospice for its overall commitment to patients and their loved ones, caring culture and complementary therapies designed to engage the senses and create unique, joyful experiences for both the patient and their loved ones. The nonprofit always begins with the question, “How do you want to live?” as the starting point for a dialogue that focuses on making every moment matter.

When a counselor gently asked Dan whether there was something special he might like to provide for Rita, he reminisced about their favorite pastimes.

A boat ride around the lake where they still had a cottage came to mind at first, but seemed difficult to achieve since Rita relied largely on a wheelchair and was at risk of another seizure. Similar concerns came with his other ideas.

And so the counselor suggested, “How about a luncheon for two?” and Dan thought it was perfect.

It’s standard protocol at Emmanuel, where granting patient wishes is an important touchstone and part of their culture in answering “How do you want to live your life?”

“As part of that answer, we often hear patients wish for things,” says Bereavement Coordinator Katie Mayberry. “We’ll do our best to make things happen, whether it’s someone still capable of taking a trip or simple things that connect them to their past, their loved ones and their friends.

“We’re grateful when businesses and others in the community step up with donations to help out.”

And so Emmanuel Hospice reserved the Emily Clark room at the facility Rita had moved into six months ago. Rita wore a pretty dress of blue and white with a dainty collar. She had her hair done and wore a little makeup and “looked like a million bucks,” Dan said.

Before they dined, two musical therapists, Miranda Eden and Ashley Sherwood, from Emmanuel performed songs by John Mayer and Kacey Musgraves.

Rose’s restaurant on Reeds Lake provided their catered lunches. She nibbled on a margherita pizza and Dan enjoyed walleye. Afterward, they feasted on hot fudge sundaes brought in from Jersey Junction.

Dan sat on her left. He worked Rita’s fork for her. He leaned in to wipe her chin, smiled and managed some laughs. He whispered that he loved her, and how he meant it from his own heart and the hearts of their three children, Michael, Kelly and Kaley.

And even though it wasn’t a wish steeped in drama or faraway travel or fireworks, he told her this was enough. Choking back tears, he said it was “just nice being close.”

He held the hand of the girl who nearly got away but ended up marrying the guy willing to bide his time. Afterward, Dan brought her back to her room and sat with Rita while she peacefully took her usual afternoon nap, leaving that day with a memory that will be remembered and cherished forever.

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Debunking Myths About Hospice Care

In today’s world, it’s tough to pin down a fact.

And for those who work in hospice especially, it’s more important than ever to keep educating an inquisitive public – and to dispel myths surrounding a viable medical option that’s been around the better part of five decades.

“I think the biggest one we still run into is ‘Wow, I don’t want to sign my loved one up because it’s like signing a death warrant,’” says Jan Amato, business development specialist for Emmanuel Hospice. “That’s a huge misconception we deal with all the time. Hospice isn’t about giving up – it’s about living more.

“In truth, hospice is for people who may have weeks and months to live. And that’s not the only myth we are constantly debunking.”

Others, says Amato, include:

  • Hospice is only for cancer patients. Not true, as more than half of hospice patients are facing other challenges.
  • That hospice is a “place.” Again, misleading, as some 70% of hospice patients receive care in their own homes.
  • Its practitioners are too aggressive regarding the use of morphine. In truth, hospice workers are not interested in hastening death and are careful about morphine and all the medical options they bring to bedside. Instead, they’re focused – especially in Emmanuel’s case – on “how you want to live” during the precious time remaining.
  • That hospice is only for those in their last days and hours. Actually, many hospice patients are still engaged in day-to-day activities. They travel. They’re up and around and interacting.

Hospice, Amato stresses, is available to anyone diagnosed with life expectancy of six months or  less. But even if you defy those odds and “graduate” from hospice, you can become eligible again without prejudice.

Another misnomer is that hospice is designed for patients only. At Emmanuel, the emphasis is on treating patients and friends and loved ones, addressing not only physical concerns, but emotional, social and spiritual needs as well.

Amato says clients are often surprised to learn Emmanuel offers many complementary therapies that bring everything from massage to music to aromatherapy to pet visits to art experiences to patients. All at no extra cost.

And speaking of cost, myths abound there, too. Normally, there is no direct cost to patients and families for hospice care. Medicare and most other insurers cover all or most of hospice expenses.

Many of the myths surrounding hospice emanate from our culture’s reluctance to talk about death and dying, Amato maintains. In a word, too many of us are in denial. When we face the fact we all must succumb to something sometime, it opens the doors to communication, and the more we talk, the more we’re liable to become educated.

To do the opposite is to possibly delay calling for hospice when the time is right. While that might satisfy the desires of some family members, it might not be what the patient really desires or needs. A capable hospice worker serves as that “extra set of eyes and ears,” acting in the best interests of that patient and working alongside loved ones to counsel them as things progress.

“We’re not there to provide cures, but instead comfort and care,” says Amato. “And when people realize that and more, patients often tell us something we hear too often: ‘I should have called you sooner.’”

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How This Hospice Provider is Building, Retaining Team Members Amid a Critical Labor Shortage

It’s no secret the health care industry is experiencing a critical staffing shortage – and hospice is not immune from the trend.

According to a 2022-23 Hospice Salary & Benefits Report, turnover rates for registered hospice nurses reached 25.15% last year. Nurses also accounted for 16.97% of vacancies. Hospice aides and certified nurse aides, or CNAs, also represented a large percentage of job vacancies and saw high turnover rates, 19.05% and 29.84%, respectively. Providers have also reported shortages among social workers and nonclinical staff.

Overcoming this challenge requires a multi-faceted approach to recruit and retain team members. Candidates are seeking a better work culture that is supportive and collaborative, better compensation and benefits and a better organizational focus on patient care – not the bottom line.

Since its inception, Emmanuel Hospice has been working to differentiate itself in these areas. In addition to providing competitive pay, great mileage reimbursement, paid self-care days and holidays, among other benefits, the nonprofit leans on a thoughtful culture.

“We’re unique,” says Katie Joseph, Emmanuel’s Human Relations generalist. “Number one, we’re independent, so we’re not tied into a larger system where you can get bogged down in red tape.

“We’re very nimble, which makes us able to try new things easily. All of us are under one roof, so if someone has an idea, we’re apt to try it, especially if it shows promise of helping those we serve.”

Another way Emmanuel sets itself apart is by offering a wide array of complementary therapies – everything from essential oils to its Art Legacy program.

“Because of that spirit, we find ourselves with more tools in our tool kit,” Joseph says. “And that translates to more creativity and more opportunities to reach out to our patients and their families.”

Joseph emphasizes a third hallmark: The way Emmanuel’s leadership team cares for its staff members.

“We really do care for our employees,” she says. “We can’t take care of our patients if we aren’t also taking care of ourselves. When someone on our team says ‘What can I do for you today?’ they’re really asking that in a genuine way. Because we know if you’re feeling well-taken care of, you’re better equipped to do that for others.”

According to Joseph, the Emmanuel Hospice culture – its beliefs and values – is imbedded into every aspect of the organization, and to a newcomer, it’s evident from the first interview.

“We are intentionally thoughtful,” she says, “and from feedback we receive, we’re known for our transparency and supportive nature. We want our people to succeed, and in expressing that, nobody is ever treated like a number, like just another worker. In short, we care.”

Something called “vital behaviors” are also baked into everyday life at Emmanuel. Those are statements and affirmations that help all employees understand expectations, codes of conduct and the importance of consistent messaging.

“We start by assuming good intentions of one another,” says Joseph. “We believe in doing what we do and doing it well. And we’re life-long learners.

“Not only do we incorporate these behaviors into everything we do, but we are constantly reminding our staff of them through emails and other updates that stress respect and open communication. We want the best out of ourselves and one another.”

Emmanuel is also very thorough about its onboarding process for new employees, which involves careful transitioning and plenty of room for questions and feedback.

“We want someone to know ahead of time what a situation might require. It’s not unusual for a nurse to spend a half day with a massage or music therapist. That helps each team member realize what another does, and how it all fits together.

“How we all fit together.”

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Support, Strategies for a ‘Good Death’

Not everyone is comfortable with the term, but at Emmanuel Hospice, professional caregivers are increasingly leaning on the concept of a “good death,” and gently sharing with their patients how embracing it can help them transition from this world to the next.

“There’s no one definition for it, but in virtually every case, it has to do with paying attention to a person’s goals at the end of life,” says Eleazar “Ellie” Lopez, a spiritual caregiver at Emmanuel Hospice. “What do you want and how can we help? How can we deliver that comfort and care?”

Relatively speaking, a “good death” is a fairly new term that is understood in different ways across various places and cultures. Some experts tend to agree it should focus on a death free from avoidable distress and suffering, a hallmark of hospice care in general. There also is consensus a good death aligns with needs and wishes expressed by patients and their loved ones.

“It can be different, though, for each person,” Lopez points out. “For me, I would make sure I’d apologize to people I may have hurt during my life. And I’d want to make sure my family was with me. So, it would be about reconciliation and relationships.

Lopez recalls that just last month, he counseled a woman who was having issues with her children, and asked, “How can we make the most of this Mother’s Day?” because it was possible she would not be alive to celebrate another.

Lopez believes one of the best ways to dignify people and help them have a good death is to listen to their stories – and be aware of how those stories connect us to one another and celebrate both our differences and commonalities.

“Each life is a story worth telling,” he says, “and each experience helps make that story special to that individual. So, you listen, and I believe listening is what I’m good at. When a person passes, their stories are now my stories, and I have them in me.”

Lopez brings a unique perspective to his job. He labored for many years in the restaurant industry, as well as in a heat-treatment facility. He’s been employed at Emmanuel for just under two years.

He’s generous with his time and gifts, aware that when he visits a hospital or retirement community, a complete stranger might summon him to their bedside upon discovering the role he plays: “I might pray with several people in a day whom I wasn’t there to visit.”

In taking time for patients, Lopez believes he’s helping people create that good death because someone is acknowledging thoughts and feelings that can assist them in moving forward in a positive way on what is arguably a difficult journey.

“Their goals become my goals,” he says. “I support them in the moment, and where they are in that moment. I want to offer quality over quantity of life. At Emmanuel, it’s what we do. It’s who we are.”

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Hospice Surfaces as Special Gift on Mother’s Day

For Joan Mattson and her four siblings, it’s all about the subtle differences conveyed in such significant ways to define her mother’s journey with Emmanuel Hospice at her side.

Especially during this month, featuring Mother’s Day as a gentle touchstone.

“One of the Emmanuel Hospice aides, Tanya, always kisses the top of mom’s head before she leaves,” says Mattson, drawing a breath. “I mean, just that kindness. It means so much.”

Mattson’s mother, Bea Blasingame, is 87 and has been under Emmanuel’s care since late last year. Initially, it was difficult for Bea to accept and adjust, given her life-long sense of independence. She was also missing friends in rural Truman, Arkansas, where she and her late husband, Robert, spent most of their 67 years together.

These days, Bea resides in Mattson’s Grand Rapids area home following a series of seizures and discovery of a related tumor that have affected her speech, mobility and other aspects of her daily life.

With Mother’s Day coming up, Mattson relates that it’s bittersweet to wax nostalgic on how things used to be.

“My mom was a morning person,” Mattson recalls. “She might be up as early as 4, and I can remember her going into the cold kitchen and standing on a rug by the register where the heat came up, saying her prayers and reading the Bible.

“And if you know how noise carries through those vents, well, her voice would come to me in my bedroom, and that’s just a very special memory.”

Mattson’s sister, Barb Raymond, says Emmanuel Hospice has been helping the family harvest and express those remembrances as they work to make their mother’s final months as comfortable as possible. In return, Bea personally thanks her Emmanuel Hospice care team – by name, when she can – during evening prayer.

One time, she couldn’t quite recall specifically one Emmanuel team member, but knew she was a spiritual caregiver. “The shepherd,” she managed to whisper. In another instance, she couldn’t conjure the name of a therapist who comes with her guitar and harp to sing hymns and more with her. “Bless the ‘music-maker,’” she offered.

Indeed, music and prayer have always loomed large in Bea’s life. She led songs at her church, sang solos and played the accordion. Her favorite Bible verse is from Psalms: “This is the day that the Lord has made; let us rejoice and be glad in it.”

Losing her husband – whom she married at 17 (she fibbed her age up to 18 on the legal document) – was tough four years ago. COVID made the grieving worse.

When Bea fell ill last winter, her son and four daughters helped her battle back, but eventually, it was decided hospice care would be best. The whole family shares their mother’s gratefulness for Emmanuel Hospice. In addition to providing medical care, the nonprofit has prioritized making space for opportunities to create lasting memories and have joyful experiences as they cherish time together.

“We don’t know where we’d be without Emmanuel,” Mattson says. “I think honestly that God has had a hand in all of this, in having Emmanuel beside us.”

Raymond adds: “We’re just floored with the quality of people at Emmanuel. What they provide is just beyond what any one of us expected.”

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