Easing life’s final choices
Elvin Flynn is a dying man, but no one here is about to deprive him of his chances to live. He lies in a hospital bed on the seventh floor of the Ronald Reagan UCLA Medical Center, a fungal infection threatening his central nervous system.
He’s already on a rigorous regimen of antibiotics. More surgery is an option but after three operations, he says he’s had enough. There’s the hyperbaric chamber; a concentrated dose of oxygen might help.
His doctors believe the odds are long. His condition is complicated by a disease in his bone marrow, and they’re waiting to find out what Flynn, 78, and his wife, Dixie, want to do.
The couple is reluctant to have this conversation. To say no to further treatment means that death is imminent. To say yes means living longer in the limbo of the hospital, no positive outcome guaranteed.
David Wallenstein would like to help. He is a specialist in palliative care, a field that lies between curing disease and entering hospice, a poorly understood and slowly evolving discipline of healthcare today.
Its practitioners are like other physicians. They run clinics, offer consultations but are skilled in leading discussions other doctors avoid. They are not shy about addressing the limitations of treatment. Nor are they averse to talking about the end of life.
“You are the tour guide to the Valley of the Shadow of Death, and as that guide, you have to carry the baggage, point out the stony road and suggest possible alternatives,” says Judith Ford, who worked with Wallenstein before returning to England in 2006 to become a math teacher. Ford headed the palliative care program at UCLA for nearly six years.
Wallenstein is more matter-of-fact. “My job is to convince patients that I have something of benefit to them when they may feel there is absolutely no reason in the world to trust a physician,” he says.
Today he is nervous about meeting Flynn, but it’s always been this way. Even before palliative care was associated with “death panels” during the recent healthcare debate, he could see patients tense when he introduced himself.
They assume he has been sent to restrict their care, so he begins asking about pain and symptoms, an introduction that often leads to a conversation about the patient’s goals for treatment. He isn’t about to limit anyone’s choices. He just wants patients like Flynn — those who have been fighting disease for so long that all they know is the fight — to realize all of their options.
Sometimes there is more to life than fighting death.
Black circles rim Flynn’s eyes, the emergence of necrotic tissue from the infection. His nose is partly covered by a bandage. To fight the infection, surgeons removed his septum, part of his sinuses and palate.
Wallenstein introduces himself. Dixie is at lunch. The doctor pulls up a chair and asks Flynn about his condition. The patient’s answer is candid and to the point.
Six years ago he was diagnosed with myelodysplastic syndrome, a leukemia-like disease in his bone marrow that has made the recent infection so difficult to cure. He didn’t expect to live this long and suspects that he hasn’t much time left.
After a decade practicing palliative medicine, Wallenstein, 53, has seen a range of reactions from patients with terminal diseases. Some have come to terms with their illnesses. Some are terrified. Others are tired, even depressed, and anticipate the end. Others are fighters, willing to pursue treatment through cycles of remission and relapse, no matter the cost.
Last August palliative care received a boost when the New England Journal of Medicine published a study showing that early palliative intervention among some cancer patients improved their quality of life and led to longer survival rates.
The journal also published an editorial with a surprisingly simple message: “… reducing patients’ misery may help them live longer.” But the editors admitted to the challenge that these specialists face in their practice. Most physicians “tend to perceive palliative care as … what we do when there is nothing more that we can do.”
Even with evidence that palliative care reduces costs and avoids unwanted and futile intensive care, the specialty is undervalued. Its doctors see patients at the request of the primary physician, who can reject their recommendations, and compensating doctors for leading end-of-life discussions is complicated.
“Healthcare reimbursement tends to favor high-tech and procedure orientations like surgery and endoscopy over the less dramatic like spending time talking,” says Thomas Strouse, a colleague of Wallenstein’s at UCLA. It is a situation, Strouse believes, reflective of “a society not quite knowing what to do with the activity of sitting with a patient and family and identifying goals of care.”
Wallenstein hopes this will change, but for now he is undeterred, confident in his training and the purpose of this medicine. He has seen how dying patients are marginalized, even discriminated against by doctors who pull back when they feel that nothing more can be done. Death will always be sad, he says, but it doesn’t have to be horrific.
In the 1980s, he worked as a social worker in the AIDS unit of a Chicago hospital and still remembers the patient who was in so much pain that he wanted to kill himself. The attending physician dismissed the behavior as “drug seeking.”
“Well, he’s dying,” Wallenstein recalls saying. “Shouldn’t he be comfortable?”
The doctor wasn’t going to be questioned. “Damn it,” he said. “If you can do my job better than me, you can go to medical school.”
Wallenstein did, studying internal medicine and anesthesiology before completing a fellowship in pain and palliative care.
Alice Chen, one of Flynn’s physicians, called for the consult. A recent MRI showed progression of the infection, known as mucormycosis, and she knew the Flynns had to decide whether to stop the antibiotics and give up on other possible treatments. It would be a lengthy and sensitive conversation.
Terminal illnesses often challenge doctors, who may see up to 20 patients a day and are so strictly schooled to find cures that anything else is thought of as a failure.
“As a physician,” says Chen, 31, “it requires a very different mind-set to accept that disease is winning and that our role is now to ease the path rather than to change its course.”
Two days later Wallenstein drops in again on Flynn, who mentions discomfort in his lower right chest. Pain and symptom management is always the first order of business. Wallenstein wants to keep his patients lucid, but he also realizes that any suffering will make thinking about the future more difficult.
He leans over and feels Flynn’s abdomen. He thinks there might be a cracked rib. Flynn had had a bad cough. Wallenstein wants to recommend an X-ray and a course of methadone, a long-acting opioid, and morphine as necessary.
Years ago when he announced he was going into palliative care, one of his teachers in medical school scoffed. “Why don’t you do something useful?” he said. “You’ll just be pouring morphine, and a nurse can do that.”
Wallenstein understood the derision. Pain is difficult to treat, and listening is not a glamorous procedure. It takes time and trust and a little effort, and its outcome is hard to quantify, especially in healthcare environments where algorithms measure likely success rates. Through his work with AIDS patients, though, Wallenstein learned that good medicine doesn’t always reach for a cure.
“I feel sadness for many of my patients. How could I not? But I deal with these emotions privately,” says Wallenstein, a master of contradictory impulses, detached and present, clinical and concerned.
The next day Wallenstein wants to see if the new medications have helped. Flynn has just woken up. His wife is at his side.
“Are you thinking about any new solution for what you’ve been struggling with?” Wallenstein asks after an assessment. He has a calm manner with a voice that is high and wispy.
Flynn mentions the hyperbaric chamber. He tried it once and found it too claustrophobic, but he’s wondering if it would help.
“Do you want my opinion?”
“I don’t believe it will make any difference. You see, here,” Wallenstein says, meaning this hospital, this institution and its doctors, “there is always something more that we can do. I’m not telling you not to try, but I’m trying to look at the bigger picture.”
Flynn understands. “I’m not afraid to go,” he says, his voice muffled as a side effect of the surgeries.
“What makes you unafraid?” Wallenstein asks.
“I’ve known the Lord since I was a kid,” Flynn says, looking skyward. “I’ve been going to church since I was 2 weeks old.”
Wallenstein does not discuss religion with his patients. He doesn’t share that he is Episcopal or that he believes in the resurrection, but he believes that Flynn’s faith will make it easier for the couple.
A nurse walks into the room and starts hooking up a transfusion of blood to keep the bone marrow disease in check. After a moment of silence, Wallenstein continues.
“One last question,” he says. “Do you have anything that you want to do?”
“No.” Flynn reaches for Dixie and asks her. She shakes her head.
Then a thought comes to Flynn.
“I want to sing solo in my church,” he says, back home in Ridgecrest, Calif.
Then, without prompting and in spite of the hollow resonance of his voice, he begins a song from the Baptist hymnal:
How can I say thanks
for the things You have done for me?
Things so undeserved,
Yet You gave to prove Your love for me....
Wallenstein is moved but contains himself. He’s gratified that Flynn mentioned this wish.
Yesterday Wallenstein and the palliative care nurse privately discussed treatment if the fungal infection were to reach Flynn’s brain. They agreed that it would be best to stop giving him blood transfusions, so he could die of the disease in his bone marrow, which would be easier to manage than the infection.
Neither alternative is good, but they wanted to be realistic, and one day, perhaps soon, this will have to be discussed.
Now Wallenstein wonders if it would be possible to get Flynn into his church again. Maybe he could sing from a wheelchair.