By Lisa Jevens
published in Chicago Tribune, Prime Time senior living
When a loved one is slipping away, your family's whole world shifts. You're often on unfamiliar ground, dealing with complicated medical situations, unexpected circumstances, conflicting emotions, and lots of uncertainty.
This is when the experienced folks who work in hospice care can be invaluable guides. Even if you've never been through the death of a loved one before, they have. There are more than 5,500 hospice agencies in the U.S., serving 1.6 million individuals annually, according to National Hospice and Palliative Care Organization.
The mission of hospice is to provide expert medical care, pain management, and emotional and spiritual support. Hospice focuses on caring and comforting, not curing.
Hospice essentially brings the end-of-life care to you. Most patients are managed at home, wherever that may be, including senior communities, nursing homes and long-term care facilities. (A small percentage of hospice patients go to live at freestanding hospice centers, or receive hospice care in hospitals.)
Care is delivered by a team of nurses, therapists, assistants and volunteers, counselors and clergy, who visit the patient and family. Hospice personnel are on call 24 hours a day to answer questions. When your loved one dies, hospice coordinates the next steps. Medicare/Medicaid and private insurance pay for hospice care.
Pam Mezyk, executive director of Adventist St. Thomas Hospice in Hinsdale, points out that hospice is there to help the whole family through the emotional transition.
Emotional, spiritual, and informational support are available to the patient and their loved ones before, during and after the death.
"A lot of end of life symptoms are a lot more than physical. That is where an interdisciplinary team comes in," Mezyk says. "If somebody is having difficulty or anxiety in anticipation of dying or fear of the unknown, there are many things we can do, including medication, spiritual counseling, massage therapy, or a life review."
"There may also be spiritual issues that come up at the end of life, relationship issues, unresolved grief," she adds.
Laima Kiliene of Naperville says Adventist St. Thomas Hospice provided invaluable support to her and her young daughter when her husband, Virgis Kilius, died of cancer in 2011.
"Hospice was sort of a miracle for me," she says. "The most important thing to me was the care provided in our own home. My husband loved being home, and I didn't want him to spend his last days in the hospital. Their help was immense, and I was able to return to work. Our nurses were wonderful ladies. My husband liked them. If I had questions in the evening I could call and talk to them."
Originally from Lithuania, Kiliene was not familiar with hospice care in America, but she warmed to it when a counselor met with her at her office after hours to help prepare her for what was to come.
"She guided me through my emotions, but also gave me the information I needed," Kiliene says. "When Virgis died, they were there within 15 minutes and handled everything."
After her husband died, Kiliene and her daughter went to a support group at St. Thomas, which they still attend.
"I was hesitant because we were really sad and upset for obvious reasons. I thought it might make it harder, but my daughter loved it. They also have a week-long day camp for kids who have lost someone in their families. She attended it twice. I realized you need other people in a similar situation. You get humbled by their grief and their pain, which might be worse than yours."
Quality of life conversations
Mezyk, who has worked in the hospice field for 27 years, says it all comes down to quality of life, not quantity.
"The first thing I tell a family is to have a conversation about quality of life and each one's expectations," she says.
She asks clients, "What is quality of life to you?"
"Once you have defined it, you get the elephant out of the room and you can start determining their long-term care needs," she says. "For example, if someone has a chronic illness like COPD, and you're going back and forth to the hospital, at what point in time do you want to stop? How many times are they going to be sent to the emergency room?"
Hospice workers are more than happy to help families have this conversation if their doctor has not already done so.
Mezyk says some adult children have trouble broaching the subject with their parents.
"The way to approach it is to ask them to 'do you a favor' by talking about it," she says. "Ask their permission to have the conversation. Once you get started, you can see where they will take it. If they say, 'I'm in perfect health, why are we talking about this?' say 'I have seen this happen to my friends, and I don't want to be in the dark about your wishes if something were to happen.'"
Mezyk adds that almost every family that has used St. Thomas Hospice has given the same feedback over the years: they wish they would have known about it sooner.