June 13, 2012 at 11:40 am , by Allison Berry
When we decided to do an article about hospice care for the July issue, we learned so much—most notably how empowering it can be for patients navigating their final days. ”I had several friends who had used hospice when a loved one was dying,” says Julie Bain, LHJ’s health director. “They all told me it was one of the best decisions they’d ever made and provided so much comfort and peace at an incredibly difficult time.” That’s why we decided to create a photo essay showing what it’s like to be a hospice nurse, caring for patients who want to die as comfortably as possible in their own homes. (That’s nurse Jill Campbell, above, of Gilchrist Hospice Care in Baltimore, which recently won an award from the American Hospital Association for its innovative care.)
• COSTS ARE COVERED
When hospice care started to become available in the United States in the 1970s, it was mostly for end-stage cancer patients. While cancer diagnoses still account for a third of hospice admissions, people with other terminal diseases such as heart disease and dementia now make up the majority, according to the National Hospice and Palliative Care Organization. We were surprised to learn that everyone’s entitled to end-of-life care, whether you have the ability to pay or not. The costs are usually covered by insurance plans, Medicare or Medicaid.
• BUT MANY PATIENTS WAIT UNTIL IT’S TOO LATE
The use of hospice services is on the rise, but some people still think of it as giving up. As a result, more than a third of hospice patients don’t start palliative care until they have just days left to live. “People are so afraid to make the decision. But when you decide to get all the hospice supports earlier on, like Linda Schuberth (one of the patients in our story) did, you can make that limited time so much better,” says Diana K. Sugg, the Pulitzer Prize-winning writer we tapped to follow Campbell for our story. Sugg worked closely with Pulitzer-winning photographer Monica Lopossay to capture the heartwarming and poignant images.
• IT HELPS THE FAMILY TO PREPARE AND ACCEPT
This was a special story to our staffers who have personal experience with hospice care. Assistant editor Amelia Harnish was only 15 years old when her dad was diagnosed with hepatitis C. Four years later, her family chose hospice when other treatments failed. “The scariest part was the night that he died,” she recalls. “You’re never prepared for something like that, and at the time, I was barely 20 years old. The hospice nurse was there to explain to us what was happening, and to make sure he wasn’t in pain. Without that sense of comfort, I don’t know how my family could have handled it.”
• IT KEEPS PATIENTS COMFORTABLE AND PAIN-FREE
For senior editor and digital director Amanda Wolfe, the decision to place her mother in hospice care at the end of her battle with ovarian cancer (which she chronicled for LHJ here) was difficult, but worth it. “I really believe that hospice is a gift to both the dying person and their family: My mother passed away in her home, surrounded by her daughters, and in the least amount of pain. Hospice made it possible for her to die in peace,” Wolfe says.
• IT PROVIDES EMOTIONAL AND SPIRITUAL COMFORT, TOO
When photo associate Vivette Porges also lost her mother to ovarian cancer last year, she had a team of hospice workers at her side—counselors, psychiatrists, even a rabbi—but her mother’s nurse Debra Fox was at the center of it all. “She knew exactly what to say and when to say it. She was an excellent listener and made it clear that we could lean on her 24/7. She coordinated everything,” Porges says.
TELL US YOUR STORIES ABOUT HOSPICE
Our story has touched a nerve, and many people have shared it on Facebook and written thoughts about their own experiences with hospice. We hope you’ll read our story “It Doesn’t Have To Be Sad,” think about it and discuss your own wishes with your loved ones. And please leave a comment if you have any thoughts you’d like to share with others.
Photo by Monica Lopossay