Can't waste a minute
August 2, 2010 -- This week The New Yorker ran "Letting Go," a 12,000-word article about end-of-life care by surgeon and health writer Atul Gawande. This "Annals of Medicine" piece is physician-centric, quoting seven physicians and repeatedly implying that physicians are the only health providers whose views and actions really matter on this issue, and more broadly, that physicians direct health care. But the article also includes a surprisingly substantial look at the skilled work of Boston hospice nurse Sarah Creed, as Gawande accompanies her on patient visits and actually relies on some of her account of hospice care, providing a far more substantial look at the nursing role in palliative care than did a long December 2009 New York Times story about sedation of the dying. Gawande's New Yorker piece offers a fairly candid and progressive view of end-of-life care, arguing that people in the U.S. too often approach the final days of life with an expensive heroic treatment model that can needlessly increase suffering and even shorten life. He stresses that careful discussion of patients' end-of-life priorities, though very difficult, seems to be the key to improving this situation (though he notes that recent U.S. health reform efforts to provide funding for such discussions were doomed by claims that they were "death panels"). Gawande does not seem to be aware that nurses, who have a holistic practice model and who have long spent far more time with the dying than any other health professionals, have been pushing just this perspective on end-of-life care for decades. And he consults no nurse as a stand-alone expert on end-of-life care, as he does several physicians; we guess that would be asking too much. But by including Creed, the piece does give nursing serious, sustained attention that is unusual in an elite magazine like this. We commend Gawande and the New Yorker for that.
Less than one fifth of Gawande's piece examines Sarah Creed and her patients, but the discussion does make an impression. After Gawande spends some time establishing some personal and historical context about end-of life care and its challenges, the surgeon describes going on patient rounds with Creed, who he says is "a nurse with the hospice service that my hospital system operates." (Gawande practices at Brigham and Women's Hospital, and he is a professor at Harvard's medical and public health schools.) Gawande admits that he knew little about hospice beyond that it provided "comfort care" for the dying, usually at home. He envisioned hospice as "a morphine drip," not as "this brown-haired and blue-eyed former I.C.U. nurse with a stethoscope, knocking on Lee Cox's door on a quiet street in Boston's Mattapan neighborhood."
The piece includes a fairly detailed description of Creed's interactions with the 72-year-old Cox, who was declining in health due to congestive heart failure and pulmonary fibrosis and now depended on oxygen. We read that Creed helped the winded Cox to a chair, and
asked a series of questions, targeting issues that tend to arise in patients with terminal illness. Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble with confusion, anxiety, or restlessness? Had her shortness of breath grown worse? Was there chest pain or heart palpitations? Abdominal discomfort? Trouble with bowel movements or urination or walking?
Cox said she was having more trouble getting her breath, and having chest pain.
Creed pulled a stethoscope and a blood-pressure cuff from her medical bag. Cox's blood pressure was acceptable, but her heart rate was high. Creed listened to her heart, which had a normal rhythm, and to her lungs, hearing the fine crackles of her pulmonary fibrosis but also a new wheeze. Her ankles were swollen with fluid, and when Creed asked for her pillbox she saw that Cox was out of her heart medication. She asked to see Cox's oxygen equipment. The liquid-oxygen cylinder at the foot of the neatly made bed was filled and working properly. The nebulizer equipment for her inhaler treatments, however, was broken.
Given the lack of heart medication and inhaler treatments, it was no wonder that she had worsened. Creed called Cox's pharmacy to confirm that her refills had been waiting, and had her arrange for her niece to pick up the medicine when she came home from work. Creed also called the nebulizer supplier for same-day emergency service.
She then chatted with Cox in the kitchen for a few minutes. Her spirits were low. Creed took her hand. Everything was going to be all right, she said. She reminded her about the good days she'd had--the previous weekend, for example, when she'd been able to go out with her portable oxygen cylinder to shop with her niece and get her hair colored.
Hey--an expert nurse doing nursing work! Whatever Gawande's overall perspectives on the role of nurses in health care, here he simply observes Creed and tells us what she does, obviously with the benefit of his own health care knowledge. There is no suggestion here that Creed needs or receives any physician direction for this vital work, as she skillfully assesses the patient and pragmatically addresses her physical and psychosocial needs.
Soon there is a telling indication of how delicate Creed's work is. When Gawande asked Cox
why she had chosen hospice care, she looked downcast. "The lung doctor and heart doctor said they couldn't help me anymore," she said. Creed glared at me. My questions had made Cox sad again.
Before they go, Creed gives Cox a hug, and quizzes her on what to do if she has "chest pain that doesn't go away"--take a nitro and call Creed through the hospice number. Here again, we see that mix of emotional support and expert patient teaching. Note that Creed would not use a term that a patient might not understand, like "persistent cardiac pain," as we could easily imagine some health professionals doing. Instead, she translates key health ideas into lay language.
Gawande then gives Creed a chance to explain what she's doing. He tells readers that outside Cox's home, he "confessed" that he was "confused" because Creed seemed to be working to extend Cox's life, when he thought hospice was about "let[ting] nature take its course."
"That's not the goal," Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We'll sacrifice the quality of your existence now--by performing surgery, providing chemotherapy, putting you in intensive care--for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren't much concerned about whether that makes people's lives longer or shorter.
Gawande discusses the effect of hospice on survival time. He admits that he had thought that hospice hastens death, because patients stop hospital treatments and receive powerful drugs to control pain. But he notes that research suggests that there is no difference in survival time for some conditions, and that hospice actually extends life for others. He says that "the lesson seems almost Zen: you live longer only when you stop trying to live longer." Cox had already lived for a year when "her doctors thought that she wouldn't live much longer than a few weeks."
Creed explains her patients' perspective and her approach as a hospice nurse:
Creed enters people's lives at a strange moment--when they have understood that they have a fatal illness but have not necessarily acknowledged that they are dying. "I'd say only about a quarter have accepted their fate when they come into hospice," she said. When she first encounters her patients, many feel that they have simply been abandoned by their doctors. "Ninety-nine per cent understand they're dying, but one hundred per cent hope they're not," she says. "They still want to beat their disease." The initial visit is always tricky, but she has found ways to smooth things over. "A nurse has five seconds to make a patient like you and trust you. It's in the whole way you present yourself. I do not come in saying, 'I'm so sorry.' Instead, it's: 'I'm the hospice nurse, and here's what I have to offer you to make your life better. And I know we don't have a lot of time to waste.'"
Creed next visits 42-year-old firefighter Dave Galloway, who has extremely painful pancreatic cancer. Gawande says that when Creed "and the hospice's supervising doctor, Dr. JoAnne Nowak, evaluated Galloway upon his arrival at home, he appeared to have only a few days left." Some may interpret that to mean that this physician "supervises" Creed, which is not the case, at least within the scope of Creed's professional nursing work. Hospice care, like hospital care, is more fundamentally about nursing. Gawande explains all the things "they" (Creed and Nowak) then did, including setting up a pain pump to allow higher doses of narcotics, arranging for an electric hospital bed, and teaching Galloway's wife to care for him. Creed tells Gawande that "part of her job is to take the measure of a patient's family, and Sharon struck her as unusually capable... She did not want to hire a private-duty nurse. She handled everything, from the I.V. lines and the bed linens to orchestrating family members to lend a hand when she needed help." Creed arranged for a special "comfort pack" of drugs to manage Galloway's various symptoms to be delivered and stored in a small refrigerator. The hospice nurses came to the house often, and the couple was finally able to sleep through the night, and even go out to a restaurant.
When Creed and Gawande arrived at Galloway's house, he had just finished taking a shower.
Dave sat on the edge of his bed in fresh pajamas, catching his breath, and then Creed spoke to him as his daughter, Ashlee, ran in and out of the room in her beaded pigtails, depositing stuffed animals in her dad's lap.
"How's your pain on a scale of one to ten?" Creed asked.
"A six," he said.
"Did you hit the pump?"
He didn't answer for a moment. "I'm reluctant," he admitted.
"Why?" Creed asked.
"It feels like defeat," he said.
"I don't want to become a drug addict," he explained. "I don't want to need this."
Creed got down on her knees in front of him. "Dave, I don't know anyone who can manage this kind of pain without the medication," she said. "It's not defeat. You've got a beautiful wife and daughter, and you're not going to be able to enjoy them with the pain."
"You're right about that," he said, looking at Ashlee as she gave him a little horse. And he pressed the button.
Here again, Creed displays advanced interpersonal skills in persuading her patient to do what is needed to achieve his goal of improving his overall quality of life. Note her probing but respectful questions, her equalizing body placement, and her effective advocacy for the pain medication, which zeroes in on the issues that seem to be most critical for Galloway. Gawande notes that Galloway "died one week later--at home, at peace, and surrounded by family." And Creed's other patient Lee Cox soon died as well, but because she "had never reconciled herself to the incurability of her illnesses," her family responded to her cardiac arrest at home by calling 911 instead of hospice, so that emergency personnel tried to revive her, without success.
The piece then leaves Creed and does not return to her, nor does it quote or really discuss the work of any other nurse. But it has given us a pretty good look at Creed's skill and autonomy in managing the care of hospice patients, as well as the importance of her work. It offers far more than did the December 2009 Times piece, Anemona Hartocollis "Hard Choice for a Comfortable Death: Sedation," which briefly quoted a palliative care nurse's interactions with a patient's family amid a vast sea of physician comment. Of course, as we'll see, the New Yorker has plenty of physician comment as well.
The rest of the article does not ignore nurses completely, but there's no question that it presents physicians as the important actors and thinkers in end-of-life care. In its general descriptions of the care of critically ill patients who may consider hospice, the piece is full of phrases like "doctors learned" and "doctors wanted" and "What do we want Sara and her doctors to do now?" Of course it's appropriate to include physicians in these discussions, but by effectively equating the health care a particular patient is getting with physician care, the phrases exclude the nurses and other professionals who also play key roles in that care.
And outside of hospice, it's clear that Gawande's points of contact with the health care system--the people to consult for expert comment about how the system does or should work--are physicians, and that he views physicians as the ones who run the show. He quotes no less than seven physicians, two at length. At one point, he quotes a "critical care physician on duty" at an ICU as noting "bleakly" that she is "running a warehouse for the dying." That can be a sadly accurate description of a modern I.C.U., except that the physician wasn't "running" it, though she may have been supervising the physicians who were present at that time. I.C.U. nurses as a group play a far more extensive role in I.C.U. care than physicians do, and they report to nurse managers. Such casual implications that everyone reports to physicians are very damaging.
The main patient whose journey the piece chronicles is Sara Monopoli, who learned she had advanced lung cancer just before she was due to give birth. The piece spends a good deal of time with Monopoli's oncologist, "Dr. Paul Marcoux," describing his treatment of Monopoli and his efforts to ensure that she and her family understood her situation, as well as his overall views about such situations. However, even though Monopoli obviously spends a great deal of time moving in and out of the hospital following the diagnosis, particularly given her fairly aggressive response to the cancer, Gawande neither mentions nor consults any of her nurses.
Not unreasonably, Gawande also mixes in some accounts of his own interactions with the dying, including with Sara herself, also a patient of his. Here Gawande is admirably self-critical, explaining that he and other physicians often have trouble being fully candid with terminal patients and having the discussions that appear to be necessary for the patients to make informed decisions about end-of-life care. He shows how difficult it is to help patients understand when many want so much to fight and explore every possible option, especially since physicians themselves are oriented the same way with regard to disease. Gawande points out that some people do survive far beyond the norm for their disease--the long tail on the curve--and that there is nothing wrong with striving for that, unless it means we have failed to prepare for what is far more likely; as he notes, "we've built our medical system and culture around the long tail."
Gawande discusses experimental programs that the insurer Aetna has run in recent years to see how offering coverage for hospice at the same time as conventional treatment affects costs and what people do. He notes that under one program the company provided patients with
phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to seventy per cent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program's leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough--just talking.
We enjoyed the surgeon's amazement that "just talking" could make a big difference in patient outcomes, but anyway, this passage is pretty good in describing the nurses as "knowledgeable" and making clear what a difference they made. It's still not the same as calling them expert health professionals, though, and in any event these are dedicated palliative-care nurses like Creed. There is still no suggestion that every nurse who provides clinical care to a dying patient could and should provide input for terminal patients, just as physicians do. Instead, the article discusses terminal patients' "discussion with their doctors" and La Crosse, Wisconsin's successful 1990's "campaign to get physicians and patients to discuss end-of-life wishes."
The piece spends a great deal of time on the views and experiences of "Dr. Susan Block, a palliative care specialist at [Gawande's] hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families." Gawande also describes in detail the experience Block had with her own dying father. Block is clearly qualified to weigh in, but there also many nurses who are nationally recognized experts in palliative care and who have had countless such conversations, as we explained in detail in our analysis of the 2009 New York Times article. However, it is difficult to imagine Gawande consulting a nurse expert in that way. Like the author of the Times piece, he seems to see nurses as involved with and knowledgeable about palliative care, but not as national experts who might merit a stand-alone consultation on the major policy issues involved.
Gawande also describes the experience of an unnamed oncologist who worked hard to help a family understand a loved one's inoperable brain tumor, even though, as the physician herself notes, she had a financial incentive to simply prescribe chemotherapy. Gawande explains that the problem is both the reimbursement structure and our social discomfort with dying, but he argues that "people need doctors and nurses who are willing to have the hard discussions and say what they have seen, to help people prepare for what is to come--and to escape a warehoused oblivion that few really want." This is a tantalizing suggestion (but no more) that nurses see a lot of death, and that they can and should be involved in these discussions as partners with physicians. And though we give Gawande credit for raising the financial issue, he probably lets physicians off too easy, giving only an anecdote in which a physician has resisted the financial incentives that clearly play a significant role in our overtreatment of the dying.
Gawande wraps up the article with an account of how his patient Sara was unable to achieve her apparent wish to avoid hospitals and I.C.U.s at the end of her life. Just before she was set to begin a new round of chemotherapy, her husband found her at home gasping for breath, with (as Gawande notes) no "hospice nurse to call." Sara was rushed to the hospital, where the "train of events ran against a peaceful ending." But Gawande says there was "one person who was disturbed by this," her primary care physician Chuck Morris, and he tried to help the family understand that this could be the end. He persuaded them to forego the ventilator and allow the "palliative care team" to visit. Still, Sara's mother told Gawande that she had to ask the "head nurse" to forego a catheter and the "bookkeeping" of lab tests and blood pressure measurements. We suspect there may have been some other professionals involved in Sara's extensive hospital care--nurses--who were also "disturbed" to see her on this path. In fact, it is a sadly common experience for nurses to try to get physicians to understand and help relieve the suffering of terminal patients caused by aggressive overtreatment.
Gawande offers some acknowledgment that nurses can and should play an important role in end-of-life care, particularly as palliative care and hospice nurses. And his portrait of hospice nurse Sarah Creed is generally very helpful. But there is not nearly enough of a sense that nurses are actually experts and leaders in end-of-life care--not just experienced hands-on practitioners. Nurses generally have far more contact with dying patients than physicians do (this is especially true of I.C.U. nurses like Creed), and not coincidentally, nursing has traditionally had a considerably more holistic approach to end-of-life care. Although nurses have pushed for better end-of-life care for decades, a reader of Gawande's article could easily get the impression that palliative care nurses are just implementing progressive end-of-life ideas that physicians like Block came up with. That fits our preconceptions, but not reality.
See the piece "Letting Go: What should medicine do when it can't save your life?" by Atul Gawande, posted on The New Yorker's website August 2, 2010.