Editor's note: This is a two-part series on hospice care in northwest Kansas. The second part will run on Sunday, June 2, on the Hays Post.
Nwester: Families, volunteers share stories of finding peace through hospice
By CRISTINA JANNEY
Hays Post
Perhaps the hardest thing we have to do as families is to figure out how to say goodbye as someone nears the end of their life.
“Trying to figure out how do I say goodbye. How do I tie things up — all those loose ends and asking for forgiveness or apologizing or even giving permission to let that person go when they’re ready,” Myrna Jordan, Hospice Social Worker, said.
Hospice tries to help families through that process.
Despite being part of modern medicine since the late 1960s, many families and patients still have misconceptions about hospice services. The Hays Post sat down with representatives of HaysMed Hospice, who explained hospice services and dispelled some of those myths.
Patients can enter hospice when two physicians have certified a patient has six months or less to live if their illness continues to take its course, and the patient is no longer seeking any curative or aggressive treatment to prolong their life, Jordan said.
If patients are able, they are included in the decision to enter hospice and the conditions of their care.
“They seek just being comfortable,” Jordan, who has worked in hospice care for 31 years, said. “They don’t worry about what’s causing everything. We treat the symptoms rather than worrying about what’s causing them.”
Medicaid, Medicare and some private insurance can cover hospice. HaysMed never denies Hospice services based on inability to pay.
HaysMed Hospice serves four counties: Ellis, Rooks, Russell and Rush. In 2023, they served 158 patients.
What is hospice?
Jordan said she has been literally asked, "Are you going to kill me?"
Some patients believe hospice workers will take all of their medication away or they will be given enough morphine to cause death, which Jordan said are misconception.
Morphine and opioids are given to relieve pain and assist in breathing as needed.
The hospice team manages the patients' medications and helps them decide which medications will be valuable. They also take vital signs and provide baths or showers if necessary
Hospice patients don't pursue aggressive treatments such as chemotherapy or have to endure labs, x-rays or tests.
“We say we stop doing things to you and start doing things for you,” Jordan said. “We are not focusing on curing anymore. We are focusing on caring.
"The hope changes. We're not going to hope this illness is going to go away because we know it's not, but I can hope that I get to see that grandbaby or get to go to the wedding or I don't have any pain or that I can stop throwing up or I can get out of this hospital and go home and sit in the sun and go fishing."
Hospice also provides equipment, including a hospital bed, oxygen or wheelchair if needed.
“The stress is really taken off these patients because they’re not worried about going back to the hospital. Their whole life doesn’t center around what are these test results going to show. We don’t worry about numbers anymore. We don’t worry about if something has increased or decreased," Jordan said.
Hospice is different than home health. You don't have to stay at home if you are in hospice.
"Where are you? What do you want to do, and how can we help you live until you die, whatever that looks like to you? "Jordan said.
“If you want to go fishing or go to the store, if you want to sit in your pajamas all day or go on a walk with your dogs, whatever is important to that person,” Jordan said, “that is what we focus on.
"Suddenly, there's some relaxation. 'I don't have to go to the doctor all of the time because they're coming to me. They're going to report it to my physician. I don't have to get out of my house to do that.'"
Helen Windholz, hospice registered nurse, said going into hospice care can be freeing. She said she especially sees this in cancer patients who have had to go through chemo and constant lab testing.
“I think sometimes the patient is ready for that before the family is,” she said.
“These family members are so tied up in the business of the medical world, and all they hear about is a diagnosis and a prognosis and the medications and when did I have a bowel movement and did the temperature go up or go down.
"That's all we focus on, and then they get to be a person again. We get to talk about our relationship. We got to talk about how we met and what got us to this point. Look at the family we've created and the friends we've made along the way. It's not so much about the labels and the medical part. This is about who they were as a person and still are."
Staying at home
Hospice care is administered at home. This can be in a residence, assisted living or nursing home. However, it's not 24-hour in-home care. The staff members and volunteers make visits. However, they are available to answer questions 24/7.
“We are a guest in their home no matter where it is. They are treated with dignity, courtesy and respect. They know when we are coming to make visits,” Jordan said.
She said many patients appreciate the choice to be in their home instead of the hospital.
“You get to be in charge and be with your family and who you want,” Jordan said, “or your dog, your cat, your donkey, whatever. You get to be home. … No machines, no lights and sirens. It’s your bed and the things that are important to you on the walls. Your family can come and go as they want.”
She said some people think hospice is just for cancer patients, but it is for anyone who is nearing the end of life.
Age does not matter.
“We take care of infants. We take care of people who are still in school, in college, still working on up to over 100,” Jordan said.
Caring for family
Sometimes patients are afraid of being a burden on their family, Jordan said.
"They’re afraid of being alone when they die. They don’t want to have pain," she said.
She said hospice care helps answer patient and family questions and navigate a journey many have never dealt with before.
"Caregivers have never taken on some of the roles that the patient used to take care of," Jordan said. "Helping them figure out what they're going to do after this. How am I going to pay for this funeral? Where am I going to go for a funeral? Helping them find community resources."
"Sometimes it's helping with the children and explaining to them what's happening and encouraging parents of young kids to contact teachers and counselors to let them know that someone in this house is sick and those kids are not going to be able to concentrate on algebra and science today because when they left, mom was crying because her mom is dying," Jordan said.
Hospice care is holistic, Jordan said. It looks at the whole person, not just their physical care.
“We address the physical, spiritual and psychosocial needs of those patients," Jordan said. "We work with their clergy, if there is one. If they don’t have a clergyperson, we have a hospital chaplain. We have help from our hospice volunteers."
Spiritual care does not necessarily mean religious. Patients have the choice of how that explore that aspect of their journey, Jordan said.
“Some people have a lot of angst about what’s going to happen after this. Is there going to be something after this? We haven’t died so we don’t know, but we try to help them,” Jordan said.
Hospice staff is not just there to address the pain of the patient.
"The patient is the reason we're there, but we're also there for the family," Jordan said. "It's not just blood family. It's whoever matters. That could be a coworker. It could be their next-door neighbor. It could be the person they sit next to at bingo—anybody who is connected to them and has a concern about that patient."
Waiting too long
The duration a person remains in hospice averages about 18 days for HaysMed.
"Some people think if a person goes on hospice, they are going to die the next day," Windholz said.
She said, it’s more beneficial for patients and families if patients can enter hospice sooner. Because of misconceptions, people wait too long to reach out to hospice, and the patient, family, and friends aren't able to take full advantage of the services.
She said families sometimes feel entering hospice is giving up. There is no time limit on hospice services. If a patient stabilizes and improves, they can go off of hospice care.
At a later date, if things start to decline again, a patient can be readmitted to hospice care.
“No one ever said we were involved too soon," Jordan said.
After death, grieving
Medical staff can't predict death, but they can point to signs the patient is nearing death, Windholz said.
When a person dies, an ambulance does not have to be called.
When someone dies, the patients are almost always do not resuscitate, Windholz said. The family calls the nurse, and that person comes to the home. The nurse calls the mortician, and the staff member stays with the family as long as is needed.
"It's a little more peaceful and quiet in a home setting. It's not a medical emergency. This is an expected event. It's just quiet," she said.
Hospice continues to offer bereavement services to family and friends for up to 12 months. It has specially trained volunteers who help make follow-up phone calls.
“Some people don’t require our assistance after the death. Some people require intense attention,” Jordan said.
HaysMed Hospice Care mails literature on grief and has a candlelight remembrance service at local churches twice a year.
Best care nobody wants
Jordan said hospice care is the best care nobody wants to have.
“We get one chance to do this, and we have to get it right,” she said. “We have to bring our A game and make sure we address absolutely everything for those people.”
Jordan said despite the challenges of working with the dying and grieving, she feels as if she's never worked a day in her life.
“We just get to love them home, and there’s nothing like this,” Jordan said.
For more information about HaysMed Hospice Care, call 785-623-6200 or 1-800-248-0073 or see the HaysMed website.