Palliative (pal·li·a·tive), noun: a medicine or form of medical care that relieves symptoms without dealing with the cause of the condition.

That sounds like hospice, right? Well, yes and no. While they share similarities, hospice care and palliative care aren’t one in the same.

“Hospice is always palliative, but palliative care is not always hospice,” says Emily Page, a nurse practitioner with Emmanuel Hospice. “Both focus on symptom management, but hospice care is more comprehensive while palliative care tends to be more consultative.”

With professional experience in both palliative and hospice care, Page is well-versed in where the two overlap and differ. She says the main distinctions lie in the breadth of services that are covered and a patient’s goals and eligibility.

“To be eligible for hospice, you have to have a prognosis of six months or less of life and a goal of treating symptoms over curing your condition,” Page explains. “By contrast, palliative care also treats symptoms, but it can be utilized for patients who are still having active treatments to cure a disease.”

For example, when working for a palliative clinic, Page would commonly see people actively receiving chemotherapy, radiation, dialysis or surgical procedures to treat cancer, advanced stages of COPD, chronic heart conditions or heart failure.

Page says a big focus of palliative care is having “goals of care” discussions with patients facing serious illnesses or chronic conditions.

This involves exploring what matters most to the patient in terms of their well-being, discussing prognosis and treatment options and facilitating decision-making. Palliative care providers are adept at monitoring changes in a patient’s condition and adjusting care plans for evolving goals.

“Palliative care programs can bridge the gap between patients who may be medically appropriate for hospice but not yet goals-of-care ready,” Page says. “In those cases, when a patient decides they don’t want to pursue curative treatment anymore, their palliative care team can shift them into a hospice program.”

It can work the other way around, too.

“If a patient enrolls in hospice and later finds a new clinical trial, they could be referred to a palliative program, which would walk alongside them while they’re actively seeking treatment.”

Coordination of care between multiple specialists, Page says, is another aspect of palliative care that can be helpful.

“Palliative care professionals specialize in putting everything together,” Page explains. “When you go to the hospital, you may be seeing three or four specialists who all have different treatment plans that don’t always work together. That’s where palliative care can come in and determine what the patient’s ultimate goals are to help the different specialists better align.”

Similar to hospice, there are different types of palliative care programs out there, Page says, so services can vary, and it is consultative in nature. Hospice, on the other hand, is a specific Medicare benefit that provides a more comprehensive approach to care through holistic, team-based services for both patients and their families.

“Palliative care can be really helpful for improving quality of life while pinpointing when a patient is appropriate for hospice and starting those discussions early,” Page noted. “Palliative care should not be seen as a replacement for end-of-life care when patients meet both goals of care and eligibility requirements.

“When considering between the two, I recommend taking the time to ask your provider questions to fully understand your options and choose the path that is best for you and your goals.

For more information, call 616.719.0919 or visit EmmanuelHospice.org.

Myths and misconceptions surrounding hospice have caused people to delay accessing supportive end-of-life care they’re entitled to – or skip it entirely.

Melissa Wedberg, vice president of community relations at Emmanuel Hospice, is passionate about dispelling these myths and empowering individuals to take advantage of hospice services earlier on.

“If you have Medicare or private insurance, hospice is a benefit you have a right to when you’re medically eligible,” Wedberg said. “We are not hastening death; we are bringing support. Delaying hospice can lead to unnecessary pain, suffering and potentially even loss of time with loved ones. After finding out what hospice is – and is not – families wish they’d called sooner.”

Hospice is not giving up.

According to Wedberg, this is the biggest mental and emotional barrier that exists not only for patients but for families and even for some physicians, too.

“Hospice is not about resigning to the disease process or age; it’s about refocusing goals,” she explained. “When someone doesn’t have curative options left, we focus on enhancing quality of life. At Emmanuel, we start with the question, ‘How do you want to live?’ Hospice means gaining support during a difficult time rather than going through it alone.”

Hospice is not just for your last days or hours.

Individuals can be on hospice for months or more, especially when enrolling sooner than later. There are many diagnoses that make you eligible.

“It might surprise people to learn that someone on hospice is not necessarily someone who looks like they’re dying,” Wedberg said. “You may have seen a hospice patient and not even known it because they were out at a grocery store or attending a ball game. Hospice care is helping that individual live how they want to live for the time they have left.”

Hospice does not hasten death.

“Hospice care is a way for people to live more comfortably for longer,” Wedberg said. “In fact, we believe hospice is more about living than dying. We work tirelessly to provide life-giving opportunities that make every moment matter.”

Studies have found hospice patients may actually live longer due to better quality of life and symptom management than those with similar illnesses who are not receiving end-of-life care.

Hospice will not make you change doctors.

“You can keep your primary care provider, or you can choose to have your care overseen by the hospice medical director,” Wedberg said. “What’s important for patients and families to know is they remain in

control when they sign on. We offer support and solutions; you can decide if or how you want to accept them.”

Hospice will not take away your medications.

A hospice nurse will work with a patient’s doctor to determine which medications are necessary to maintain comfort, but “if a patient wants to continue a medication they’re taking, they’re generally able to do so,” Wedberg said.

Hospice is not a refusal of all medical treatment.

While choosing hospice means a focus on quality of life over curative measures, that doesn’t mean all medical treatments stop.

“With the exception of cancer treatment or dialysis, it’s rare patients have to give up treatment, especially when it’s for symptom management,” Wedberg said.

Hospice will not administer pain medication regardless of need.

Some believe hospice will immediately use heavy pain management, such as morphine or opioids, no matter the situation. There is also the myth that these medications will hasten death. Both are not true.

“We only treat pain if pain exists,” Wedberg said. “And we’re going to treat it at the appropriate level for each individual only to relieve discomfort and improve their quality of life.”

Additionally, patients are empowered to use other therapies and services, such as massage therapy, acupuncture, essential oils and more, alongside or instead of medication to manage their symptoms, depending on their wishes and goals.

Hospice is not a place.

Hospice is rarely an actual location that people go to, but rather a service that comes to you wherever you call home.

Hospice is not a one-time decision.

“If for any reason you don’t want hospice anymore, you can stop at any time and there’s no penalty,” Wedberg said. “You can leave and come back. You can switch providers. If a miracle treatment or clinical trial becomes available, you could take it. But in the meantime, if you’re eligible for hospice, why not get that support in place?”

For more information, call 616.719.0919 or visit EmmanuelHospice.org.

When Mary Ann Sabo was told her brother Stephen only had a few months to live, she immediately knew two things. First, she would bring him to her home to spend his final days. Second, she would need help – a lot of help.

Stephen had been born with spina bifida, which brought with it a host of physical and developmental disabilities. He was living in an independent apartment in Grand Rapids with a lot of daily support prior to an accident that landed him in a rehab facility where the pandemic accelerated his decline.

Mary Ann reached out to the team at Emmanuel Hospice to see if moving him to her home was even possible. Her brother would need help with pretty much everything – dressing, toileting, bathing, medication management and a host of things neither she nor her husband felt prepared to undertake. An Emmanuel social worker spent a day making calls before reaching out to tell Mary Ann the one word she most wanted to hear: yes.

“Stephen had a lot of complex physical needs I couldn’t handle on my own,” Mary Ann recalls. “Emmanuel Hospice was our quarterback, providing my family with the most compassionate team to lead his care for the final six weeks of his life. They recommended a skilled nursing agency that could support Stephen’s daily needs with kindness and grace. Emmanuel even found us a sitter who could spend time with Stephen when Jeff and I had to work.

“For so much of Stephen’s life, we heard no, no, no – we couldn’t accommodate whatever the ask was because his needs were far too complicated. At the time when it mattered the most, Emmanuel got us to yes in the blink of an eye.”

That’s one of the primary reasons Cara Vink joined Emmanuel Hospice as a nurse case manager. For a decade, she had worked in a residential setting caring for those with disabilities, caring for those often written off by society. After completing a nursing degree, Vink was ready to take her new skills and push her advocacy in a new direction.

“The families of people with special needs are very passionate,” Vink notes. “They’ve had to fight for their loved ones for years. They are that loved one’s first champion – and that can be a real barrier to calling in hospice. Families can be terrified because they think it means they’re giving up, and they’re wired never to give up.

“It’s my job to provide education, to reassure them hospice doesn’t mean we’re done fighting at all. It does mean their loved one can receive more support and more visits from a broader variety of caregivers – nurses, aides, spiritual caregivers, music therapists and more. It means they can get help 24/7 to manage symptoms and make their loved one more comfortable.”

Communication is critically important during end-of-life care – and doubly so, Vink says, when dealing with a patient with disabilities. Too often, these patients are ignored or overlooked, so Vink stresses the importance of clear, direct communication.

“When I sit down with a new patient and family, I make sure they know they are the priority,” she explains. “It’s not just ticking through a list of questions. I make sure it’s a discussion, and I allow extra time for questions.

“It’s important to make sure the patient is included, even if they are nonverbal. I talk to the patient directly, even though I know they might not be able to respond. How we treat each and every patient is so important. That speaks volumes to families, particularly those with disabilities.”

Vink notes Emmanuel Hospice supports in other ways, large and small, to care for those with disabilities, including:

• Procuring durable medical equipment: For individuals who need a new wheelchair, it might take a year or more to wade through the insurance process. Vink says Emmanuel can cut through the red tape much faster, securing a new wheelchair in a matter of days or an oxygen tank in the middle of the night.
• Providing grief support: Vink explains shifting out of champion mode can be difficult for loved ones of those with disabilities. “It can be a grieving process not to have the same goals in mind, to feel like you’re giving up” she says. “We can help with the grieving process while the patient is still with us.”
• Delivering individualized care: A lot of Emmanuel patients end up feeling like family, Vink notes. “You get to know people very well,” she says. “As a nonprofit, we have the time to do extra things, such as patient wishes or complementary therapies that provide comfort and create memories. We pay a lot of attention to detail.”

That was especially true for Stephen Sabo. His Emmanuel care team loved talking with him about two of his favorite things: cooking and fishing. They celebrated with him when his great-nephew was born, with a music therapist coming in to record Stephen’s heartbeat and set it to music to share with the little one he would never meet. Emmanuel nurses and aides laughed and joked and made him the center of attention until Stephen drew his last breath – and then they anointed his body with lavender and embraced his sister.

“I could not have asked for a better death for my brother,” recalls Mary Ann, wiping away the tears that still come readily four years later. “And I could not have done it without Emmanuel Hospice.”

For more information, call 616.719.0919 or visit EmmanuelHospice.org.

Tenacious. That’s how Kristin Leese Linkfield describes her father, John Leese, who passed away at 92 years old from complications of Parkinson’s disease in April 2024. Diagnosed at age 74, his courageous fight lasted 18 years.

“When he was diagnosed, that tenacity that was engrained in him came out immediately,” Linkfield remembers. “He wanted to do everything he could to fight it, keep on top of it, even though he knew it was likely a losing battle unless a cure was found in his lifetime.”

Linkfield remembers her father as “a wonderful man who did a lot of wonderful things for people, never looking for praise, but because it was the right thing to do.”

She says he was always seeking perfection and excellence in everything he did. He was adamant he didn’t want to burden his loved ones in any way and, as an accomplished engineer, there was nothing he couldn’t fabricate, build, create or design to solve a problem.

“He was trying to organize and work things out for my mom even in his last days,” Linkfield remembers. “In his eyes, everything had to be perfect so when he left, he wasn’t leaving her with any problems to handle. During his last week alive, we assured him he’d done all he could. We told him, ‘We’ll take care of mom. You taught us well. You can go.’”

As Father’s Day nears, the second without her dad, Linkfield feels at peace knowing he passed into the presence of his Lord and Savior. She also has a sense of relief that his struggle with Parkinson’s is over.

For 10 months, he was under the care of Emmanuel Hospice, a service Linkfield describes as having brought a lot of joy and comfort. At the time, Linkfield felt entirely overwhelmed by her father’s medical needs, but said the Emmanuel care team “swept in like angels,” knowing just what to do. In reflecting on her father’s end-of-life experience, there’s nothing she would change.

“There is grief and mourning, but I also know it was time to leave his earthly body,” Linkfield says. “He lived a good long life and went out on his own terms. But I don’t know how we would have gotten through those 10 months without Emmanuel Hospice. I want people to know that hospice is there to help you make things as good they can be in the circumstances you’re in.”

An especially bright spot in the journey was Emmanuel Hospice aide, Taylor Fowkes, who Linkfield describes as a spitfire. Leese and Fowkes quickly developed a special bond.

“Some would describe my dad as having a prickly exterior with a soft soul on the inside,” Linkfield says. “Not everyone got to see his soft side unless they knew how to dig for it. He often acted tough, but when Taylor walked in, she had him evenly matched. It was like she was handpicked for my dad. God had a plan in that.”

In addition to his connection with Fowkes, Leese especially benefited from massage therapy and spiritual caregivers, as well as specialized nursing care, medication management and equipment for his changing symptoms. From Linkfield’s perspective, there was nothing Emmanuel Hospice couldn’t solve.

On her father’s last day, his apartment was full. Linkfield was touched that the whole Emmanuel care team and several family members were there.

Particularly meaningful was the blessing of thanks, a ceremony that blessed his journey home and expressed gratitude for each part of his physical being – “eyes that have looked on us with love,” “ears that have been attuned to our needs,” “hands that have been a source of welcome and help,” “a heart that has given and received love” and so on – with an anointment of lavender oil.

“The blessing of the body ceremony is sacred to me,” Linkfield says. “I still hold close to my heart how beautiful that was. I will never forget it.”

If you or someone you love is on grief journey and would like support, please contact our Grief Support Team at EHbereavement@EmmanuelHospice.org or call 616.719.0919. Our services are open to anyone in the community. We offer individual counseling as well as support groups, classes and workshops. More information is available at EmmanuelHospice.org/grief-support.

How do you want to live?

It may be surprising to learn that’s the first question Emmanuel Hospice asks every new patient. Isn’t hospice about dying?

While hospice is often associated with death, Melissa Wedberg will tell you it’s more about living, especially at Emmanuel Hospice, where she serves as vice president of community relations. With more than a decade in the hospice industry, Wedberg has spent years dispelling this and many other myths.

Despite having roots in the U.S. dating back to the 70s, there remains a lot of mystery about hospice. Common questions Wedberg hears include: What is hospice and who’s eligible? How does hospice work? How is hospice paid for?

The medical definition of hospice is holistic care and support for people who have been given a physician prognosis of six months or less to live, but Wedberg encourages anyone with a serious illness to learn about hospice services sooner than later. The six-month prognosis is a guideline, not a guarantee or definitive timeline.

“Individuals can be on hospice for months or even years,” Wedberg says. “Studies show hospice care can actually increase life expectancy.”

Hospice focuses on enhancing quality of life through comfort care, symptom management and emotional and spiritual support. Some providers provide those basics and so much more, as Emmanuel does with its patient wish program and complementary services such as music and massage therapy.

Wedberg stresses that anyone can inquire about hospice and be evaluated for eligibility. You don’t need a physician referral to begin the process.

“If anyone is interested in hospice care, we can do an evaluation,” she says. “A hospice physician gives the first certification, then the primary care provider can either agree or disagree that, based on our assessment, this person has a life-limiting illness that qualifies them.”

Patients must also elect to forgo curative treatments. To be clear, this decision does not involve hastening the end of life, but rather focusing on living more comfortably.

“It is important you have goals of care that align with the goals of hospice,” Wedberg clarifies. “That is to say, you no longer want to take great measures to prolong your life, that you accept your disease process for what it is and just want to be comfortable and happy in the time you have left.”

But what does that look like? Wedberg says when Emmanuel Hospice asks, “how do you want to live,” people often talk about the little things in life that matter most.

“We hear a lot about what is important to people, such as making family memories, remaining connected to their faith community, eating their favorite meals and doing activities that bring them joy,” Wedberg says. “Our team will design a care plan around the things patients want most.

“Many people also tell us they don’t want to have the trauma and the drama of medical care anymore. They don’t want to go back and forth to emergency rooms or doctor offices getting poked and prodded rather than doing what they enjoy in the safety and comfort of their home and with their loved ones.”

Another important detail most people don’t know: You have choices.

“We are really fortunate in West Michigan to have a lot of options when it comes to end-of-life care, but not every provider offers the same services or operates in the same way,” Wedberg says, encouraging people to visit Medicare.gov to compare ratings. “You can call and interview multiple providers before you make a decision. It’s important to find one that’s a good fit for your needs.”

What about the cost? The good news is hospice care is often completely paid for Medicare, Medicaid and most private insurance carriers. Most commercial plans also have some form of coverage. For individuals who are uninsured, pro bono care may be an option.

“Pro bono is not the standard in our industry,” Wedberg adds. “But as a faith-based nonprofit provider, it is Emmanuel Hospice’s position that if someone needs and wants end-of-life care, the cost should not be prohibitive. Everyone deserves a good end of life.”

For more information, call 616.719.0919 or visit EmmanuelHospice.org.