Hospice: Helping and Comforting Patients and Families on their Journey
Years ago, a hospice was a haven for travelers who needed a clean bed and a meal on their journey. A candle lit in the window was a sign that there was a room available, a safe place to spend the night.
Today, the word "hospice" is better known as a program that provides care for patients whose illness has reached a point where treatment focuses more on comfort than cure. It can conjure up unpleasant thoughts or emotions for some people, but that's generally because of a lack of real understanding about what hospice care can provide for patients and their families.
According to Kay Williams, M.S., Director, Home Care/Hospice/Palliative Care/Rescue Alert, at Lourdes Hospital in Paducah, Kentucky, "People's perception of hospice can be a little skewed. They often picture someone on their death bed, but hospice isn't only about the days before death. It's really about building a relationship with patients and families in the months before death, finding out what's important to them and providing comfort on their journey."
For the most part, hospice programs provide expert care and advice at home so that patients are able to live at home and receive the love and support of their families and friends. There are some actual free-standing buildings that provide hospice care, but most, like the one at Lourdes Hospital in Paducah, provide home-based care.
When patients begin hospice care, they meet a team of experts, including nurses, counselors, pastoral counselors, care aides, doctors and volunteers who talk with them to find out what's important in terms of how to live the last months of their lives, and how they want to die.
In most cases, the first thing a patient can expect from hospice care is managing the practical aspects of their illness. "We help set them up with medicines, supplies and services they need," says Williams. "Once we get the physical symptoms under control, then we can deal with the psychosocial and emotional issues."
Williams says that there are a lot of what she calls "life closing" things patients want to do before they die. They might want to see a grandchild graduate from high school, attend a family member's wedding or be present for the birth of a child. "We can often help them accomplish these goals," says Williams.
"For example," she says, "there was one gentleman who loved deep sea fishing. He wanted to take one more deep sea fishing trip, but he suffered from terrible nausea. We were able to prescribe medications for him that controlled the nausea, and he went on that last fishing trip."
Another common goal for patients is to heal rifts in relationships. "There may be a person they'd like to reconcile with, or they may want to reconcile with God," says Williams. "We can help facilitate those kinds of things."
Understanding and alleviating patients' fears and concerns
It's not always easy or simple for patients to decide that hospice is right for them. One common concern is that patients don't want to seem as if they're giving up on their faith that God will heal them. Williams explains to people that hospice care has no ability to interfere with God's plan, and that the hospice team is there to provide care and support.
It can be difficult for families to agree that it's time for their sick loved one to begin receiving hospice care. "Sometimes, in big families, it's hard to come together," says Williams. In cases like that, she says, "Admissions are more about family conferences to talk about goals and needs right now."
Fear is one of the biggest challenges for patients whose illness has reached a point at which they're considering hospice. A primary focus of the hospice team is understanding the basis of patients' fears and identifying appropriate interventions. Fear of the unknown can be powerful. "A lot of times," says Williams, "patients are afraid of what's likely to happen to them as their illness becomes worse. We can tell them what they can expect, based on their diagnosis. We tell them what's likely to happen and how we'll be able to treat them. We're usually able to make them feel more at ease after these conversations."
Care differs from patient to patient
"We also find out what's important to them in terms of treatment," she continues. "Care differs based on each patient. Some say, 'I don't want to be in pain, period.' Others say, 'I want to be able to communicate with my family. I can take a little pain as long as I can talk with my loved ones.'
"Patients are our guides," says Williams. "We listen to them."
When is the right time to consider hospice care?
Williams believes that it's a good idea for patients early on in their illness to talk about hospice with their healthcare providers. She suggests patients ask their doctors, "When might it be a good time to talk about hospice?" That way, she says, "It's done with less emotion."
The average length of stay for hospice is now 40 days, but hospice care was originally designed to last for at least six months. Williams believes the reason for the decrease is that doctors can be hesitant to refer a patient for hospice care. She recommends that patients not wait for their doctors to bring up the idea of hospice. "Doctors don't want to look like they're giving up on a patient," she says. Patients who have reached a point where they believe they're ready for a different approach should talk to their hospice provider. "The hospice provider can talk patients through the issue of talking with their doctors about their wishes," she says. "This gives doctors an opening and often can relieve a burden on the doctor. They don't look like they're giving up."
"There's always something we can do"
For Williams, who's worked in hospice care since 1980, the work is extremely rewarding. "This job has been so rich," she says. "It's the ultimate in human experience." She enjoys working with patients and families at this point in their lives, she says, when people are "most real, open and honest."
She also explains that many times, when patients decide to enter hospice care and not continue with their cancer treatment, such as chemotherapy and radiation, they often start to feel better. "Some cancer treatments are so devastating to the body that the patients actually feel less sick once they begin hospice care."
And, she adds, "there's always hope. You're never giving up hope. There's always something we can do, whether it's being a companion to a sick person, providing the best medicine for pain...there's always something we can do."
Personal Interview, Kay Williams, M.S., Director, Home Care/Hospice/Palliative Care/Rescue Alert, Lourdes Hospital, Paducah, Kentucky