In a beautiful home near Collegeville, Pa., an oxygen machine is pumping air into the lungs of 40-year-old Joanna Little. It's August. Little has terminal cancer, and has recently chosen to stop chemotherapy.
This is a story about the end of life - about doing what's right for you, and what really matters. Ultimately, this is about a very uncomfortable question. How do you want to die?
Eighty percent of Americans say that they would prefer to die at home. But most of us end up dying in hospitals or nursing homes, hooked to machines.
A pilot program in Philadelphia provides patients the care they want when living with a life-threatening illness -- and where they want it - at home.
Joanna Little, one of over 300 patients enrolled in this program wanted to share her story with us.
Fighting an uphill battle
On a sunny August morning, oncology nurse practitioner Meghan Coleman was headed to Collegeville to visit Joanna Little, who had recently chosen to transition into a different kind of care.
"It means that she is not going to take treatment any further, she is going to be comfortable, her needs will be met," explained Coleman.
Coleman is working for a project called CLAIM, which stands for Comprehensive Longitudinal Advanced Illness Management. It's a U Penn pilot program providing extensive care for cancer patients who are either dying or facing very serious illness. They work with patients who qualify for home care - meaning, they are so sick they have trouble getting around.
As part of the program, patients have nurses who visit them at home. Coleman hadn't met Joanna Little yet, Little's regular nurse was not in on this day, but Coleman knew a lot about her patient's wishes.
"She wants her children by her side, to be there for them to be together and for her not to be on a cycle of hope, and chemotherapy not working, hope, and chemotherapy not working," said Coleman.
Little's house is spacious, with a beautiful yard, and comfy couches. Pictures of Little's husband Garth and their four children cover most walls. Their youngest son is in elementary school, their oldest daughter in college. The living room floor is criss-crossed with clear tubes, tethered to oxygen tanks in another room. On this August day, Little looks pale, a tube pushes oxygen into her nose. She and Coleman strike up an easy conversation, chatting like old friends.
Little was diagnosed with stage four rectal cancer in 2008. When it was discovered, the cancer had already spread to her lungs. She had been enrolled with Coleman's program since May of 2013.
"I have been fighting cancer for five years, and it has been an uphill battle, it's been horrible. Anything that could go wrong, went wrong. I am allergic to three chemotherapy drugs that we know of now," said Little. "It has just not been an easy five years - but I fought through everything; I'm a fighter; I don't give up easy at all."
But by early 2013, Joanna said she was tired of the constant hospitalizations. She was run down, and emotionally drained. She missed her home. Home cooked food. She enrolled with the CLAIM program - to access more comprehensive care..
"So I came home and Rosie showed up and it was like love at first sight," she said with a smile. Rosie is Joanna Little's regular visiting nurse.
Little says some of her friends and family were not happy with her decision.
"That's it, you are dying, death wish has been signed, death is imminent. And to me, that's the dumbest, you don't tell me that."
Understanding care options during severe illness, and at the end of life
That thinking - that even considering the end means "it's over" is a misconception that Dr. David Casarett faces a lot. He is in charge of Hospice and Palliative Care for Penn Medicine, and heads the pilot program Little is enrolled in. He explains that there is a big difference between what the program provides, and hospice care.
"Palliative care is an extra layer of support that goes on and over the other care that patients get when they are facing serious, often life-limiting illnesses," he said. "It includes pain and symptom management, emotional and spiritual support, more broadly, it's tying everything together, making sure all the physician and healthcare providers are talking to each other."
Casarett says this kind of care can go hand-in-hand with active treatment, or it can help shepperd a patient in the last weeks of life. His pilot program is funded with over four million dollars from the Centers for Medicare and Medicaid Services. His team is investigating whether having this kind of wrap-around care gives patients better quality of life, and saves money because of reduced hospitalizations. All patients in the program have a care team in addition to their regular oncologists and primary care docs. They can call a hotline at any time, and if they are in crisis, a nurse will come to their home.
"We provide the eyes and the ears when we see a patient in the home, but we try to relay what we see and what we hear to the patient's healthcare provider, so everybody is on the same page. We don't take over the care," said Casarett.
The patients in the program are very sick, not all are dying. Some are still in active treatment for their cancer, some are considering transitioning into hospice care. Casarett says sometimes, his care teams facilitate a long-overdue conversation.
"A story I hear all the time is that a patient really doesn't want another round of chemotherapy, but doesn't want to tell their doctor because he doesn't want the doctor to think he's giving up," said Casarett. "The doctor also doesn't think that a round of chemo will benefit the patient, but she doesn't want to tell the patient that, because she doesn't want the patient to think she's giving up on them. So you have a physician and a patient neither wants more chemotherapy, neither think it will help, but they are both playing the game."
Patients typically spend several months in the program. Jamee Roberts is a clinical social worker who works with patients in this study. She says getting involved with families for a longer period of time allows her to better care for their needs in crisis situations: "We have got to know people over a period of time, and love them and so they know we care, and when you have that kind of closeness with a family, then there is a trust that develops."
'I plan on living'
During our August visit, Joanna Little said having this kind of care has made her feel more in charge. "I don't know, nobody gave me the manual on being a cancer patient, but at some point you have to take control of your own health," she said, laughing.
"I plan on living. Now I'm exhausted, and I have to rest and relax a whole long time, but I want to be here for my kids, and be here for my husband and my family."
That question of "what do you want" enters the conversation early on, says oncology nurse Meghan Coleman. Care teams discuss goals of care with patients - the trade-off between chemotherapy, side effects, time lost, time gained.
On her way back from Little's house, Coleman contemplated the choices her patient had made:
"She sees the value of living her life, I'm not sure that everybody gets that....I just get the feeling she really understands what it means to live," said Coleman.
During a visit in October, Joanna Little was in bed. Her breathing was a bit more labored, and her mother was now staying with the family. But, Little seemed upbeat and happy, she had a new puppy, and her nurse had just delivered her medications.
"How are you doing?" asked her nurse, Rosie Winkler as she was taking Little's blood pressure. "I'm the energizer bunny now" said Little between coughs. "I'm really tired today though" she added. "You say that every time," joked Winkler, "you're tired because you have a puppy to take care of!"
There had only been one hospitalization since the summer, and Little had just managed to drop her daughter off at college.
Palliative care expert David Casarett says so far, he has enrolled over 300 patients in this pilot program. The goal is 1,600. He says what he has learned so far is that this program is filling a huge gap in care - patients who are very sick, but not at the very end of life often experience a myriad of poorly managed symptoms; pain, nausea, depression, or anxiety. They end up in the hospital because of a fever, or a pain flare up. They receive treatments they don't want, or need.
He hopes that providing patients with comprehensive palliative care could not only save money - but could mean that a patient's journey through illness, or toward the end of life becomes easier, better planned and managed.
"It can be something that is so positive, if you just allow them to help you out" said Little during our October visit.
Joanna Little died in November of 2013, surrounded by her family.