One day last July, Lisa Krieger, a reporter for the San Jose Mercury News, found her frail, 88-year-old father trembling violently and babbling incoherently in his room in the assisted living facility where he was still recuperating from surgery on a hip broken in a fall. He also suffered from advancing Alzheimer's disease. She rushed him to the emergency room at Stanford Medical Center, in nearby Palo Alto, Calif.; the diagnosis was septicemia. He was catheterized, X-rayed, treated with antibiotics and blood pressure medication, hooked to a ventilator and admitted to the intensive care unit.
Over the next five days, amid a cascade of symptoms, diagnostic tests, specialists' opinions, agonized surrogate decisions by his daughter and interventions that each, in its turn, would prove futile, the unconscious Ken Krieger generated $283,750 in medical bills.
Lisa Krieger wrote about her father's last days in the Mercury News in February. Before dementia dimmed his mind, her father had signed both "do not resuscitate" and "desire for a natural death" orders, she noted. But full knowledge of his wishes translated into very little practical guidance as she threaded the slippery slope that ended with his death in a $10,000-a-day hospital bed 10 days after he'd arrived in the emergency room.
Cost and Quality
The story Krieger wrote had two themes. It opened by addressing the soaring "cost of dying" (that was the headline), emphasizing the irony that a thrifty man who thought he had taken all the right steps to assure a calm and simple passage from life would, after 10 days, run up a final hospital bill of $323,658. (Only about 20 cents on the dollar was paid by Medicare; more generously insured patients and donors helped Stanford reduce the shortfall.)
Krieger quoted Virginia Hood, M.D., president of the American College of Physicians (ACP), in observing that national health care expenditures have doubled since 2000 and now represent almost 18 percent of the U.S. gross domestic product. "The costs are rising at an unsustainable rate," Hood asserted, adding in a subsequent conversation, "End-of-life care contributes an enormous amount to those costs, and we do a lot of things then that are futile."
Acknowledged Krieger: "Who's driving big health care spending? People like my dad."
The second theme, and the soul of her piece, was a wrenching account in human terms of how that happens … a detailing of the quandaries that confronted her as her father's condition inexorably deteriorated. Each stage appeared to be readily treatable with a different, if increasingly expensive, medication.
"Doctors want to be able to make things better," Stanford's interim chief medical officer, Norman Rizk, M.D., explained to her later. "[They] sometimes overestimate the utility of what they do. They want to be hopeful." And, he added, they run the risk of malpractice suits by aggrieved families if they unilaterally withhold any potentially effective treatment. "There are very powerful incentives," Rizk pointed out, "for physicians not to pay a lot of attention to costs."
As the clinicians came and went, and as she fretted each night in a cot at her father's ICU bedside, Krieger repeatedly asked herself, "Was this escalating price — emotional, physical, financial — worth it? I was adrift in a sea of conflicting emotions. Even if we saved him, dementia would continue its march. But he deserved a chance … . Who was I to summon his death?"
On the fifth day of her father's hospitalization, a clearer line presented itself. He had developed necrotizing fasciitis. Neither a $1,986 synthetic antibiotic called Linezolid nor a $48,000 course of immunoglobulin had stemmed the new "flesh-eating" infection. His doctors began discussing amputation and skin grafts.
Krieger finally turned to family members and friends for counsel. The consensus: "Let him go."
She agreed. Ken Krieger was moved out of the ICU into a private room and given only painkillers and sedation. Ninety-six hours later, at 3 a.m. with daughter Lisa at his shoulder, he stopped breathing.
She Could Have Called
Lisa Krieger's story resonated with readers who'd suffered through similar end-of-life ordeals on behalf of loved ones. The newspaper received hundreds of emails and letters, and ran a follow-up two weeks later in which Krieger responded by outlining the lessons she'd drawn from her experience. A third follow-up ran in April.
Krieger had two principal regrets about the handling of her father's terminal hospitalization: "I was ill-prepared," she summarized. "I hadn't thought far enough ahead. For me, planning should have begun the day my dad got his Alzheimer's diagnosis, four years before his death. Certainly, when he broke his hip. By the time we got to the ER … it was far too late."
And, as she lamented to bioethicist Daniel Callahan, M.D., whom she'd quoted in her original article, "I wish someone had told me about the range of choices. Not just: ‘Do you have a DNR? Treatment or not?' Rather: ‘We can do everything. Or we can do some things, but not others. Or we can do nothing but keep him comfortable.' That conversation never happened … . I wish I had demanded some sort of ethics consult."
In fact, an active ethics committee is on call for patients at Stanford Hospitals & Clinics, asserts the committee co-chair, philosopher and medical school professor David Magnus. Members round on the ICUs weekly and do about 100 consultations annually, he reports. Magnus notes that he has been interviewed frequently by Krieger in her role as a medicine and science reporter, and considers her a friend. "I have her number on my cell phone and she has mine," he says. "She could have called me at any time."
But even as sophisticated a caregiver as Krieger — she has a biology degree and worked in hospitals before entering journalism — can become flustered under the pressure of frightening unforeseen events. As her father slumped into unconsciousness beside her in the car on the way to the hospital, Krieger wanted only for doctors to see him through the crisis. And after a cursory conversation about her father's overall condition, that's what the emergency physicians at Stanford did.
"In the ER you always err on the side of rescuing the patient," approves Magnus. "What Lisa really needed was a palliative consult. But, in general, the ER is not the place for that. We're working on it at Stanford, but the solution is not to have an ethics committee or a palliative care team hanging out there. You have to have the conversation and the planning take place much earlier, in the outpatient setting."
Time to Talk
Jeffrey Stoneberg, D.O., directs the one-year-old inpatient hospice and palliative care department at Alta Bates Summit Medical Center, across San Francisco Bay from Stanford, in Berkeley. His staff of one — himself — is about to be doubled by the addition of a nurse practitioner. On a recent day, his service caseload was 22 patients.
"If we get a call from the ER," he apologized during an evening break, "I've kind of got to drop everything and get down there, which is going to screw up the rest of my day. That's the challenge we're facing."
What's more, he noted, "for me, a family meeting averages an hour. And there really ought to be a series of those conversations. I try to see as many people as I can — I do triage, with the ICU patients first, but in the acute care setting we're already behind the eight ball. Everything is reactive — decisions are being made quickly and without foresight. Instead of our defining the treatment plan, the plan defines itself. And families are making decisions out of grief — they're losing somebody."
Like Stoneberg and Magnus, ACP president Hood, a nephrologist who, in addition to teaching at the University of Vermont College of Medicine, is an attending physician to kidney patients at Fletcher Allen Health Care in Burlington, emphasizes that end-of-life wishes should be discussed by doctors and patients and those responsible for seeing them fulfilled long before the last ride to the hospital — or, better yet, the last ride home to die peacefully in familiar surroundings.
Indeed, the newly released sixth edition of the Ethics Manual written to guide the ACP's internists, hospitalists and other primary care subspecialists states that "physicians should routinely raise advance care planning with adult patients with decision-making capacity and encourage them to review their values and preferences for future care with their surrogates and family members.
"Conversations with the patient and patient views about care preferences should be documented in the medical record," the Ethics Manual continues.
Realistically, notes Stoneberg, it's difficult for a harried community physician to shoehorn that kind of fraught discussion into a 15- or 20-minute office visit. (So, doctors ought to piecemeal the topic over several visits, he counsels.) In melting pots like the San Francisco Bay Area, widely disparate cultural attitudes toward life, medical treatment and death require thoughtful parsing. Nevertheless, he declares, the hospital system that allows for and promotes such crucial conversations "is going to have fewer people in the hospital getting futile care — and is going to save a lot of money."
Magnus points out that an ordinary DNR order is valid only for a particular institution. "It goes away the minute you leave that hospital," he says. The ideal permanent documentation of the specific treatment a patient with advanced illness or frailty wants and doesn't want — including DNR — is a brightly colored form called a POLST, or Physician Orders for Life-Sustaining Treatment. Always to be kept at hand, the POLST was developed at the Oregon Health & Science University and is now in use at hospitals, nursing homes and doctors' offices in more than 30 states.
Krieger wishes she and her father had been offered a POLST at the time of his dementia diagnosis. (The form, however, is intended only for those likely to die within a year, Magnus notes.) She wishes his doctor had emphasized, "It's only a matter of time. You need to be thinking about this." Just a few days earlier her father had been helping her rake leaves in her garden — actually, picking them up one by one because he could no longer remember how to use a rake. He seemed to be subsiding very gently into that good night; she felt no urgency about envisioning how to react in specific scenarios in which his death was imminent.
And then he was in the ER. Once there, Krieger recognizes, "the default for medicine is to act. What happened was sequential. I didn't realize you could come into the ER and say, ‘Just treat him with comfort care.'" (That is an option that is becoming more common, Stoneberg says.)
Not Giving Up
In fact, Krieger recalls, when she finally decided that "he is suffering without purpose … there are far worse things than death," and asked about the availability of hospice care, "instantly the palliative care team came in." (Her father was awaiting transfer to an outside hospice bed and one had just opened up for him when he died.)
Trying to get a sense of his prognosis had been frustrating for her. Even his attending physician, Krieger says, would only allow, when buttonholed, "It's not black and white; it's gray." None of the doctors she saw daily suggested that she consider palliative care. Perhaps that's not altogether surprising: Dedicated clinicians can become as deeply invested as the patient and the family in battling a terminal disease. But, says Hood, at some point, "physicians have an obligation to withdraw and call in other viewpoints."
Unfortunately, observes Stoneberg, many doctors share the widespread misperception that palliative and hospice care are synonyms for "giving up."
On the contrary, explains Stoneberg, palliative care is the relief of pain at any stage of an illness. And a recent study showed that patients with metastatic non-small cell lung cancer who received palliative care as soon as they were diagnosed lived significantly longer and enjoyed a better quality of life than those who received "normal" treatment.
"Any hospital with a good palliative care program has seen the number of ethics consults go down," Stoneberg asserts.
Similarly, says Magnus, hospice care has been shown to prolong life. Patients are officially eligible for hospice care if their life expectancy is six months or less, but the average length of stay in a hospice in the United States is about seven days. "We don't get patients in nearly soon enough," he argues.
A key principle expounded in the ACP Ethics Manual, declares Hood, is that physicians have a responsibility to provide "cost-conscious care. That means the judicious use of resources as well as doing what's in the best interest of patients."
If doctors once claimed to be too high-minded to factor mere dollars and cents into their diagnostic and treatment decisions, those days are past. Cost-awareness now is being woven into the curriculum taught to medical students and residents at, for example, the University of California, San Francisco. A group of young doctors and entrepreneurs with foundation backing are building a model (www.costsofcare.org) that will harness "social media, mobile applications and other information technologies" to make real-time price accessible to doctors and patients at the moment they're making medical choices. A pilot is scheduled for launch at a Boston emergency room "in the near future."
At the end of life, observes Hood, "what medical treatments usually do is buy time. And that may be valuable. But sooner or later, some event will trigger the death process, even if it does seem like an acute problem that theoretically could be treated.
"It's the obligation of a physician," she continues, "to let patients and their caregivers know about the resources available to them [like an ethics committee, palliative care or a patient advocacy program] to help clarify issues that are problematic." And when caregivers and physicians agree to forgo heroic intervention, she suggests, "the thing to focus on is that we're not making the decision, the disease process is making the decision."
It's hard to second-guess Lisa Krieger's impulse to speed her struggling father to the emergency room. Comfort care would not have been immediately available to him at his assisted living facility. And his doctors skillfully did what doctors do. But in hindsight, his death could have cost him far less physical distress, his daughter far less mental disquiet, and Stanford and American taxpayers far less money if things had played out more nearly in conformity to best practice.
Half of all Americans die, like Ken Krieger, in a hospital. One in five of them die, unlike him, still hooked up to expensive monitors and machines in an ICU. A little less than a quarter die in a nursing facility, and the rest at home — which is where 80 percent of them say they would prefer to die.
"There's a big chasm between what people want and what actually happens," says Hood. "If we can't close that gap, at least we can narrow it."
Intimate accounts in the press like Lisa Krieger's will help, she believes.
David Ollier Weber is the principal of The Kila Springs Group in Placerville, Calif. He is also a regular contributor to H&HN Daily.