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No one likes to think about death and dying. But when we see our loved ones experience declining health, we are often forced into making some difficult decisions.

Unfortunately, many avoid reaching out to obtain hospice care until their loved one has declined so much that medical professionals can do no more than what they term “crisis management.” Meanwhile, more and more families are beginning to recognize the great benefits of connecting with hospice services on a longer-term basis.

Mifflinburg couple Steve and Sharon Niles are among them. When Steve’s mother, Betty Niles, lost her husband and began experiencing increased struggles related to pancreatic cancer, Steve and Sharon decided the best thing to do was bring Betty from Ohio to live with them.

The third day after she arrived, Betty nearly passed out, and they quickly took her to the Evangelical Community Hospital. While there, they were approached by workers with the hospital’s hospice program. And it seemed like perfect timing.

“We knew that we were going to have to have some type of help,” Steve said. 

Within the next couple of days, hospice care for Betty began. For the next six and a half months, aides arrived regularly to bathe Betty and provide other nursing care. The hospice program chaplain also regularly came to visit Betty, who had faithfully attended church before becoming sick. 

Hospice workers instructed Steve and Sharon on everything they needed to know about Betty’s medication, and would monitor its use each time they arrived. In addition, as Betty neared the end stages of her life, hospice workers coordinated the provision of a hospital bed, oxygen machine and other needs.

“That helped us concentrate on her caregiving rather than trying to find that equipment,” Steve said.

 

Benefits of long-term care

According to Kay Holdren, director of hospice of Evangelical, hospice nurses are always closely working with the attending physician and director regarding medication and the management of care. 

In longer-term hospice care, such coordination of people and of the meeting of needs becomes much smoother, and while the quantity of life diminishes, the qualitative benefits increase.

“An earlier admission doesn’t change the outcome, it just gives us more time that we’re getting those quality moments,” Holdren said. And a chance to build trust.

“It allows the nurses and aides to get to know the person we’re caring for better,” she said. “Every person is different. Understanding their physiology as well as personality helps us to develop a stronger care plan.”

Adds Kathy Paul, the primary registered nurse for the Niles family, oftentimes the same nurse is coming regularly to work with a particular patient, and is able to see what might be normal or abnormal for them.

“Being able to manage on a longer-term basis allows patient and family to have many more better days,” she said.

When hospice is only called in when a person is in the last day or two of their life, hospice nurse educator for UPMC Susquehanna, Nancy Patchen, said it’s next to impossible to build that kind of relationship of care and trust with the patient or the family. But longer-term care fosters stronger support and acceptance. “This whole time of life can be one of reminiscing, laughing with one another — rather than trying to put out fires that can come out in the last day or two of a person’s life,” she said.

 

The mission

Evangelical Community Hospital’s hospice program is recognizing 30 years this month. Holdren has been involved for nearly all of that time and has seen changes to it, including an increased staff and hours dedicated to hospice care services, some regulatory changes, and more acute and layered diagnoses in individuals, likely due to medical advancements that have led to longer lifespans.

Some cultural changes have also taken place. For example, families are having fewer and fewer children, and many children are moving out of state to follow careers — making it more difficult to find steady support in one’s final days.

That is what makes hospice work even more important today. Simply defined, hospice care is, according to Holdren, “holistic care, designed to meet the physical, social, emotional and spiritual needs of patients and families going through the end-stage of life.”

Teams of nurses, social workers, aides, chaplains, pharmacists, dietitians and therapists, and many volunteers, under the guidance of a medical director, work together to provide this care for those whose health is steadily declining, typically with a life expectancy estimated to be six months or less.

 

Misconceptions

Some hospice patients are only receiving hospice care for a few days, while some for a year or more.

Being on hospice care, Patchen said, “does not necessarily mean people are dying quickly.” Unfortunately, many families tend to fear hospice care because they associate it with the belief that their loved one will die in a couple of days. Many believe that hospice is there to stop medication, but what they do is simply manage it for the comfort and needs of the patient.

Once those fears are assuaged, the benefits of hospice can be realized.

“When a patient and family comes to a place of acceptance of the disease and hospice is called in, a great burden is lifted, and the focus can be on caring and loving the patient in this special season of life,” Patchen said.

This is why she and others in the hospice program work regularly to educate the community and get families talking with each other about the reality of death and how hospice can help face the inevitable.

“Sometimes I believe death is oversimplified,” Paul said. “When we think of dying, we don’t necessarily think of all the things that lead up to a death. There are many people that I see who believe they’re just going to close their eyes and they’re going to go to sleep, but that’s not always how it is. That mindset also has something to do with people putting off coming to hospice.”

According to Holdren, hospice care provides much more than just medical assistance. “It’s emotional help,” she said, “walking the journey with you.”

 

Caring for the caregivers

While hospice care certainly means help for the patient, it also means help and hope for the caregiver — often family members who have no training in how to medically care for their loved one or prepare for the dying process. The longer they take advantage of the hospice program, however, the more time nurses have to instruct and educate them on how to provide care in those times when a hospice worker isn’t present. Meanwhile, the families can also be comforted in knowing that if help is needed, they can call 24/7 and know a nurse is on call and ready to come at any hour of the day or night.

Hospice workers can also prepare families for what they may see and can expect as their loved one’s health diminishes, such as labored breathing, restlessness, or sensitive skin.

Sharon said such education helped to keep her from panicking when she saw the signs.

In addition, hospice volunteers coming to the house meant Sharon could have that time to do chores, run errands, or spend time with her grandchildren, rather than be at Betty’s side 24/7. The nursing care was also a “godsend,” she said, as Betty become more difficult for her to handle on her own.

“If hospice had not been there to help us, I’m not sure what we would have done,” she said.

Hospice programs also offer bereavement help and counseling for family members.

“We had counselors on a regular basis that would just sit and talk with us to make sure we were OK,” Sharon said.

Steve said that was one of the benefits that he appreciated the most. “To take care of anybody that’s in the end stages of their life, caregivers have to have their mind right,” he said. “Everyone who walked through the door, from aides to the RNs, they always checked on our status, to find out how we were doing.”

In order to continue offering this type of support to caregivers, the nurses and other hospice professionals must remain mentally and emotionally strong as well.

Patchen said UPMC’s hospice nurses attend end-of-life conferences at least twice a year, and are part of an End of Life Nursing Education Consortium.

Without support for them, Patchen said, “You’re going to lose nurses to compassion fatigue, overwhelming sadness that can occur when you see death after death.”

In addition to training, Patchen said they also provide sessions where hospice workers can “sit and talk and discuss our sadness and help us to come to grips with this really tough work that we do.”

 

After the goodbye

Betty Niles passed away at the Niles’s home last August at the age of 84.

“Sharon and I were right next to her,” Steve said.

They called Paul, their nurse, who responded immediately to the home and helped with many different things, including paperwork and coordinating a funeral director.

“It was very smooth, professional and very dignified,” Steve said.

Since then, hospice workers continue to reach out to them.

“Somebody checked on us and still checks on us at least once a month,” Sharon said, “to see if there’s anything we need, if we’re OK.”

Nearly a year later, and they continue to care for Betty’s King Charles Spaniel, Piper, who she was able to bring with her from Ohio. And they look forward to December when they will serve as representatives for the hospice program’s fundraiser, Lights of Love, when a tree will be lit in front of their building, with lights representing and honoring the lives that families in the program have said goodbye to.

The lights might also represent the joys and happy memories that can be made with loved ones in their final days, when hospice care can provide care, comfort, and dignity to the dying process.

The goal of hospice, Holdren said, is to walk the journey with the loved one’s friends and family, and to assure them that the decisions they made were the right ones at the right time.

“I know we can’t take away a family’s sadness,” she said, “but I hope that there’s no regret.”