Choosing to make the most of every moment: An intimate view of hospice care

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Choosing to make the most of every moment: An intimate view of hospice care

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November is national Home Care and Hospice Month, which recognizes the dignity hospice care can provide to patients who need it most, and the professionals, volunteers, and family members who bring peace to individuals in their final days.

Visiting Nurse’s annual fall gala, In The Moment–A Celebration of Life, raises funds to support terminally ill patients and their families served in their homes or at Hospice Atlanta Center. This year’s gala will be held Nov. 18 and honor long-time hospice program supporters, the Carlos family, for their commitment to philanthropy in our community.

It’s Wednesday afternoon at Hospice Atlanta Center, and nurse Wendy Gleason works from a desk covered in jolly Disney paraphernalia, her Mickey Mouse earrings sparkling. Above her desk, a Walt Disney quote: “If you can dream it, you can do it.”

Across the hall, inside an elegant library, a volunteer plays a beautiful Pie Jesu on a grand piano. Laughter rings out in the in-patient facility’s halls, as a cook delivers custom-ordered meals to patients.

Minutes later, a doctor rushes to help ease a very ill patient’s pain. A chaplain helps a family grapple with devastating news. In the acute care wing, a young patient spends what may be their last days with family and friends.

This is a place where life and death intersect in ways most of us have never seen. Because in hospice care, the aim is not to cure disease, but to help patients through the process of dying.

“In most facilities and hospitals, the mindset is curative. Where in hospice it’s not curative, it’s palliative,” says Gleason. “Palliative means you’re not trying to cure the disease. You’re trying to manage the symptoms and improve quality of life.”

For most of us, the thought of death and dying is difficult — even the idea of contemplating end-of-life care can be daunting. But November is National Hospice month, a good opportunity to bring awareness about hospice care to family and friends.

What staff at Hospice Atlanta Center want people to know is that while there are certainly tears and grief in caring for dying patients, there is also a lot of laughter, reflection, relief and love.

“Humor works wonders, and that’s what I use a lot,” says Gleason. “I have a weird sense of humor and it works for a lot of families. I encourage them to enjoy the moment. It’s not all gloom and doom. You just have to live for this day.”

Gleason has a shock of spiked white hair, sparkling eyes and a touch of a northern accent. She worked in retail for The Walt Disney Company and as a bartender before going into nursing.  After witnessing hospice care as the assistant director in a long-term care facility, she found herself inspired by how the Center treats family members as well as ill patients as a holistic unit.

 “We’re working with the family, not just the patients,” says Gleason. “We’re basically there for education and trying to help everybody have a better quality of life in getting through this. Because the patient is going to have her journey. We can’t stop it. We are not going to cure them. We can only make them comfortable.” 

As part of the larger non-profit Visiting Nurse Health System, Hospice Atlanta Center serves all who need hospice care and offers both a residential wing and an acute wing for patients who need more intensive care. The facility also serves as home base for a staff of mobile nurses who treat patients who have opted to live out their final days at home.

Tucked away in a leafy residential area near Lenox Mall, Hospice Atlanta Center was built in 1996 with support from Atlanta’s prominent Carlos family. The interior of the one-story brick building has pockets of serenity as well as the warmth of a big, shared home.

Patients’ rooms are furnished not with hospital equipment, but with real dressers, tables and comfy armchairs. Beds can be moved outside to one of several secluded gardens. Volunteers stock library shelves and patients and their families are invited to a daily high tea. A sun-soaked chapel offers a place for reflection, while a kids’ playroom is bright and colorful — and has a coveted Xbox.

All-in-all, the space feels less like a place of death than a place where life carries on in spite of death.

The things you won’t find? Invasive procedures to help artificially preserve life in a comatose patient. In hospice care, patients have accepted that the end is near, and have chosen to die on their own terms.

But it doesn’t mean that they have stopped living.

“I think there is a common misconception about hospice, that people think if someone talks about hospice or gets referred to hospice that you’re going to die like in a day or the next day,” says Dr. Karen May. “It’s actually really helpful for people months before to help improve their quality of life… for whatever time they have left.”

Dr. May is one of several doctors on the staff who are on hand to take calls when at-home nurses need a consultation about a patient. Both the doctors and hospice nurses work together to educate families on how to manage medications and what to expect in the coming weeks or days.

Home patients usually get at least one visit a week from a nurse, although some may receive as many as several visits each day depending on their needs. When families are overwhelmed or a patient’s pain or breathing can’t be managed, home-care patients are rushed straight to the acute care wing at the Center, to a private room and to a doctor who is already intimately familiar with their needs.

Not only does hospice provide comfort for the physical body, it also seeks to alleviate some of the difficult psychological needs of a dying patient. That means providing a chaplain to address spiritual concerns and a social worker to help with wrapping up more domestic and practical considerations like finances.

But of all the things that hospice does, Gleason says being there until the very end is one of the most important parts of her job. Hospice nurses are on hand to help ease pain in a patient’s last moments, help the family grieve and prepare the body for the funeral home after death.

 "We’re there for when you die,” says Gleason. “That’s the epitome of being a hospice nurse that you are there at that moment to help (families) cope with this last moment.”

The Carlos Family: A personal experience

When Jimmy, John and Helen Carlos were growing up, they remember their parents’ seemingly endless capacity for giving back to their community, whether it was their father Andrew passing out coats at an orphanage or their mother Eula leading the philanthropic group at the family’s Greek Orthodox church.

Apparently, giving runs in the Carlos’ blood. The family has contributed to numerous health organizations across Atlanta (Children’s Healthcare of Atlanta, Marcus Autism Center and Shepherd Center, to name a few).

“My parents just had a heart for helping people,” says John. “Look, I mean, you’re fortunate, you’ve been blessed with a lot, things work for you, and you’re going to give back.”

One of the family’s most significant legacies is Hospice Atlanta Center, which Eula and Andrew had a large part in founding. Eula in particular had an interest in health care, often bringing speakers from Shepherd Center to speak at the family’s church and visiting children at the hospital. But it was during a visit with her physician, Dr. Arthur Booth, a hospice advocate, that she became interested in creating a dedicated hospice facility in Atlanta, since there wasn’t one at the time.

Another visit with a hospice worker in 1986 further inspired her to join Dr. Booth in a long and determined advocacy for bringing that same level of end-of-life care to Atlanta.

“She came to the meeting and she explained what hospice care is,” says Helen. “That it’s just a beautiful way for people to be able to pass on with dignity and love and great care. And it just really touched everybody in the room.”

Soon after, Eula Carlos and a small group of fellow advocates began to raise money to build a hospice facility in Atlanta. Their efforts took off and in 1996, the elegant, multi-winged Hospice Atlanta Center opened its doors.

In what the family thinks of as a bittersweet sort of serendipity, the very place that Eula Carlos helped create would also be the place that she would spend her final days.

After a tough meeting with their mother’s cardiologist at Piedmont Hospital in early 2015, the family together decided to move Eula into the Center she doggedly advocated for. And admittedly, even for a family who had long been not only familiar with the concept, but advocates for it, the decision wasn’t easy.

“It’s a difficult thing to approach,” John admits. “Everyone in their heart has to feel like it’s the right time…but when it is the right time it’s the most peaceful way to deal with death.”

And yet, what followed surprised them all. Out of a hospital environment and in the family-oriented environment of hospice care, their mother thrived.

“I honestly think that being there gave us four months with her that we possibly would not have had,” says Helen. “It gave our family time to digest what was going on. Family and friends were able to come visit. I think our health improves when we have our family around us, and we feel more joyful.”

In those four months, the family was able to come together and spend valuable time with their mother. A priest visited her regularly and friends and family poured in and out. The family remembers being delighted to see a spark of humor return to their mother as she bantered with her brother.

“We told about every story over and over,” says Jimmy. “And there was so much laughter and so much humor. We re-lived a lot of stories growing up. It was an opportunity for all her friends to come in. Also there were the quiet times when there was nobody there and just sitting with her. Just being there felt really good.”

At the Center, the Carlos children bonded with the Center’s staff and with another Greek family going through the same thing. For them, the Center was a place to spend time with Eula without the stress of managing medications, preparing meals, watching over her at night and housekeeping. Their mother’s time there even served as a family reunion, of sorts.

“We’ve all got busy lives and it’s tough for everybody to get together,” says Jimmy. “But with her at the Center you just had some extra time to do things. So it was nice just spending time with her.”

Today, the Carlos family sees themselves as stewards of their mother’s legacy. Jimmy currently serves as a board member, helping steer the mission and help on the business and philanthropic sides. They encourage everyone who has an interest in hospice care to learn more about Hospice Atlanta Center and become involved, whether it’s considering the facility for a loved one, donating or volunteering.

“Everybody can participate. You can participate on a personal level with a family member or you can participate by supporting hospice,” says Helen. “We all are in the same walk. None of us are going to get away from the end of life.”

Hospice professionals: The business of dying

It takes a very special person to be able to manage emotions and remain upbeat when faced with dying patients.

Dr. May and Gleason are just a few of the many hospice workers a patient and their family may encounter in a day, from the volunteers (who often return after losing a family member of their own), to the housekeeping and kitchen staffs. For John Carlos, the employees are one of the best things about Hospice Atlanta Center.

“The (employees) create the atmosphere and then the patients fall in line with it because it’s a peaceful way to be,” says John. “They have very uplifting personalities that allow the good to come out.”

“The staff there and the nurses, down to the housekeepers, who I just loved, they all gave us a personal touch,” says Helen. “If you needed to talk to a doctor they were just right there. It was a great experience…When you see (hospice care) in action you have an entirely different perspective. The fear is just gone.”

Dr. May is a slight, serious woman who still manages to break into a flurry of laughter despite being pulled in several different directions.  In just a short conversation, she is juggling numerous demands: answering calls from nurses treating patients at home, rushing to a patient’s aid and discussing cases with her colleagues.

She became interested in hospice care after watching both her grandparents elect that route. These days, she splits her time between the emergency room at Piedmont Hospital and Hospice Atlanta Center. And though she is calm and steady in talking about her work with hospice, she admits that some days are harder than others.

“Certain cases can kind of trigger something in you. I try to reflect on a lot of cases and process the emotion,” says Dr. May. “You kind of have to compartmentalize it or you cry every day, all day."

Like Dr. May, Gleason says despite trying to remain upbeat, there are certainly times of grief. They both admit working with young terminal patients and patients with young children is hard. Working with ill children is especially difficult. Hospice workers often, at least for a brief time, become a part of the family. But the workers learn to take the grief of losing a patient in stride,” says Dr. May. “I try to look at the positive of how we were able to help in that situation. We’re all going to die. So hopefully we’re helping people die with dignity and comfortably.”

More than grappling with grief, Dr. May and Gleason say they have learned a tremendous amount from their patients on how to live.

“You just learn that you don’t take your family for granted. You don’t take anything for granted,” says Gleason. “And don’t take life so seriously. Have a good laugh.”

It’s a lesson Gleason carries with her when treating every patient. She recalls arriving at the bedside of an elderly gentlemen and finding a family unsure of what to say and the young children in the family afraid. So she arranged an impromptu pizza party.

“I said what are you doing? I’m hungry, let’s order pizza. I said, kids you can sit on the bed with grandpa,” Gleason says. “They started sharing photographs and everyone was laughing and carrying on. And he started smiling,”

“He died that night. But he had a party. And they got to reflect and make it a celebration.”

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