Mary Pitzer looks pale and thin in her bed in Martinez, but her face brightens as she talks about her family and the home where she has lived for 21 years and where she still keeps bedrooms upstairs for her grown sons.
“It was just like the mountains when I moved here,” she said, gesturing toward her tree-lined subdivision.
Pitzer reflects part of a trend. After she ended the chemotherapy that wasn’t helping her advanced leukemia, she left the hospital and enlisted the care of University Hospice.
“I just wanted to be home,” she said with a smile.
Although the number of cancer patients dying in the hospital or receiving aggressive treatment at the end of life has declined, progress addressing patient preferences varies widely across the country, according to a Dartmouth Atlas of Health brief.
Augusta had the largest decline in patients receiving chemotherapy in the last two weeks of life from 2003 to 2007 and in 2010, according to the analysis. The trends reflect the goal of informing patients and families about options and getting them more involved in decision-making, said Dr. David Goodman, a co-director of the Dartmouth Atlas of Health Care Project and a professor at the Geisel School of Medicine at Dartmouth.
“It’s no secret that for decades many patients who have advanced cancer and are dying of cancer receive much more aggressive treatment than they would prefer, that most people, when facing the end of their lives, want to spend as much time as they can at home and with family and friends,” Goodman said. “They have some pretty clear goals that are inconsistent with being in an intensive care unit or being terrifically sick with side effects of medications or attached to ventilators and IVs.”
Since deciding in March to stop chemotherapy that wasn’t helping his metastatic lung cancer, Clyde Bailey, 62, said he feels much better getting care from Trinity Hospice.
“I tell you what, this hospice at Trinity has helped me more than the treatments did,” he said. “The treatments are awful; they just make you feel bad. Since I got with Trinity it seems like it’s really picked my spirits up.”
One of the goals of hospice is addressing not just physical pain but also emotional and spiritual challenges with the patient and family, said Patricia Scoggins, Trinity’s hospice director.
“A hospice covers the entire person and their family,” she said. “We have to support the family through this as well as the patient.”
Research shows patients placed on hospice and palliative care outlive similar patients pursuing aggressive therapies, said Dr. Tara Kattine, University Hospice’s medical director.
“It seems counterintuitive, but it’s almost as if you get treatment that makes you feel better, you feel like living longer and do,” she said.
The Dartmouth Atlas of Health Care brief, which looks at and analyzes Medicare data, found the percentage of cancer patients dying in hospitals decreased nationally from 28.8 percent in 2003-07 to 24.7 percent in 2010, but the range varied across the country from 13 percent to 50 percent. The percentage of patients receiving chemotherapy in the last two weeks of life was virtually unchanged in that time period at 6 percent nationally but decreased rapidly in Augusta from 10.8 percent to 3.8 percent.
Scoggins, of Trinity Hospice, said she believes that is because people are better informed about options.
“We’re out there; we’re educating community groups, church groups, doctors,” she said. “We have support groups and they pass the word on to
the neighbors and friends.”
Part of it is also the population as a whole is aging and they are starting to have those conversations, said Kattine, of University Hospice.
“People are thinking about this and they have watched those before them, how they died, and it makes them think about what they want for themselves,” she said.
While there is progress in many areas, more needs to be done, Goodman said. The number of patients enrolled in hospice in the last month of life increased during the study period from 54.6 percent to 61.3 percent, but the number entering hospice in the last three days before death also increased from 8.3 to 10.9 percent, the study found.
Scoggins said she sees it almost every day.
“It’s almost a shame how late referrals come in,” she said.
That quality of hospice care remains a concern, Goodman said.
“Hospice care is actually about living and being able to live so people can meet some really important goals they have, things they want to do, not about somebody who is just on the edge of death so they die at home or die in a nursing home,” he said.
For her part, Pitzer got to tell her family about her choice the way she wanted to. Her sons and grandchildren visited for a weekend, and she sent them out to have a good time.
“They said they never laughed so hard in their lives,” she said, her eyes shining. Pitzer told them of her decision at the end of the weekend.
“I wanted them to have one good weekend together,” she said, “and I think they did.”