IN THE ONGOING NATIONAL DISCUSSION over healthcare reform, the high cost of end-of-life care often is at the center of the debate. and, for better or worse, ucla often finds itself framed within the spotlight of that discussion.
for example, a study conducted by researchers at dartmouth university about medicare spending during the last two years of life, which was published in 2008, found that ucla’s expenditures were among the highest in the country – an average of $93,842.
While that number might strike many as shocking, it does not tell the whole story. the dartmouth analysis only examined costs in patients who ultimately died and “ignores the possibility that resource-intensive care may improve survival rates,” as countered in a separate study by a group of physicians at ucla and five other california teaching hospitals.
Indeed, this second study, published in the journal Circulation: Cardiovascular Quality and Outcomes, found that hospitals, including ucla, that spend the most money on heart-failure patients do indeed have lower mortality rates. clearly, despite the cost, extraordinary medical care – involving months in the intensive care unit and scores of high-tech diagnostic tests, transplants and more – can save lives.
And yet, as an article on the dartmouth study published in The New York Times last year pointed out, while aggressive care can save lives, it doesn’t always, and in these situations, the toll is more than monetary. When a patient, in spite of the best intentions of caregivers and loved ones, is kept alive beyond any capacity for an existence without machines, past the point of futility, and dignity, the “cost” is steep and impossible to quantify. it’s an issue of continued concern to the ucla hospital administration and medical staff.
“The ‘we’re not going to let you die’ credo has been part of the culture here,” says Tom Rosenthal, M.D., chief medical officer of UCLA Health System. “And it remains true that if there’s a chance we can save your life, that’s what we’re going to try to do. the question is, when does it become clear that we’re not going to succeed? and when we can’t succeed, what are we going to do to still provide the best care?”
“Sometimes, providing the best possible care means the newest and latest aggressive therapy and technology,” says Anne Walling, M.D., a clinical instructor and specialty training and advanced research fellow at Ronald Reagan UCLA Medical Center. “But sometimes it means sitting down to have an honest conversation about end-of-life issues and developing a care plan that focuses on comfort.”
Questions like how to determine that striving for a cure is not actually in the best interest of the patient and when to stop aggressive care and let go are especially complex at a place like ucla, which, as a tertiary and quaternary care facility, tends to the sickest of the sick. patients often don’t come to UCLA until they’ve run out of options, and, because of the extraordinary level of care and the excellence of the hospital and its staff, “They come hoping for us to save them,” Dr. Rosenthal says.
“It does happen, but for many patients, that’s not the outcome,” says Patrick Dowling, M.D., chair of the UCLA Department of Family Medicine. That statement is particularly true for the very elderly. “People are living much longer than before, so we take care of many more people in their late 80s and 90s, and they’re very fragile. at that age, many systems – heart, kidneys, etc. – start breaking down. this is one of those times when more care may not be better care.”
“I THINK THAT WE, AS DOCTORS, really have to be humble and recognize there are cases where we can’t save a life,” says Tamara Horwich, M.D., a heart-transplant specialist at Ronald Reagan UCLA Medical Center. But such acceptance can be a challenge, especially for doctors who treat patients with the most complicated medical cases.
Complex care requires an ability “to look at zebras and find alternatives,” Dr. Rosenthal says. “Doctors who thrive on complexity are really good at doing everything they can to save your life, but in the midst of that effort they might be reluctant to step back and ask if the plan of care is still consistent with the patient’s interests, if there really is a chance for survival.”
It is a troubling situation for people who devote their lives “to defeating disease at every stage,” says Dr. Dowling. “They see giving up as a failure.”
The struggle to pull back is as real for the families of terminal patients as it is for the physicians who treat their loved ones. And sometimes that can lead to unfortunate outcomes for patients who are no longer able to make decisions for themselves and wind up receiving aggressive care they would not have chosen. “It’s a real roadblock,” Dr. Dowling says. “People want everything done for their loved one, and they don’t understand what that means, what it does. These very aggressive responses can cause pain and injury to a patient, especially to a frail, elderly person.” And once life-sustaining measures are initiated, “it is a very difficult problem to unhook someone.”
There are those cases “where families make decisions the patient wouldn’t have wanted, and the patient’s dignity is compromised because families are pushing for heroic measures that are bound to fail,” Dr. Wenger says. “If there is evidence of the patient’s wishes, we don’t allow that. But when there is no advance directive, the family usually makes the call. It’s important to have a discussion with patients in a timely manner, when they are able to make their wishes known.”
The best course, says Dr. Horwich, “is from the get-go to keep the patient and family educated and informed about every single issue in the process of care. If we say ‘your heart is weak and you have lung disease because you’re a smoker, so we don’t know how well you’ll do,’ then, when you let them know that transplant is not an option due to advanced lung disease, and there are no other options, the family is not surprised or angry.”
FACILITATING AND STANDARDIZING such conversations and giving doctors, patients and families the tools and support to make the difficult decision to suspend aggressive treatment in favor of comfort care are ongoing goals of UCLA Health System. For example, over the past two years, the hospital has expanded significantly its palliativecare program (see “Comfort Measures,” UCLA Medicine, Fall 2009) and begun emphasizing the program’s services to its physicians. “More physicians are asking for consultations with the palliative-care team,” says Dr. Dowling, and not just in terminal cases.
Drs. Dowling and Rosenthal and others at UCLA would like to see palliative-care services utilized early in treatment, as a standard part of care. “The expansion of the program has been a major change at UCLA,” Dr. Dowling says. “I’m pleased with that because it’s really about patient rights – about them understanding their rights.”
When a disease course presents no options, the service gives patients and their families help in making informed end-of-life decisions – about, for example, pain and symptom control and whether or not to transfer to hospice care.
“Our goal is to determine what the patients would want,” says Bruce Ferrell, M.D., director of adult palliative-care services at UCLA. “Do they want dialysis? A ventilator? Do you do a procedure on a patient when it is unlikely they will recover? There are a lot of decisions to be made. We need to be realistic with patients about the natural course of diseases, and we really get to know patients and their families so we can help them come to peace with their decisions.”
Sometimes patients come hoping for a miracle, “but that likelihood is so remote, and maintaining the patient is uncomfortable and difficult for them, while the resources that are necessary are enormous,” Dr. Ferrell says. “We don’t pull the plug on people – if a person has a legitimate belief system, stated in an advance directive, we respect those wishes.” When there is no such directive but the family is pushing for extreme yet ultimately futile care, “we get the ethics committee involved,” he says.
The ethics committee can step in – at the request of the medical staff, patients or families – for a variety of reasons. sometimes, patients don’t trust the advice of their doctors, or they get conflicting information. “that can become an issue when different doctors are involved who are seeing different things,” says Dr. Wenger. “It’s like the story about the blind men feeling an elephant; each one feels a different part of the body and has a different interpretation of what kind of animal they’re touching.”
More commonly, patients or their families may have unrealistic expectations, or may have religious or cultural objections, to a plan of care. Or, they simply may not want to stop even when treatments become futile. “Optimally,” says Dr. Wenger, “we on the ethics committee should play no role, because these decisions should be made in an iterative fashion by patients, families and doctors. In most cases, it does move in that direction, and doctors are getting increasingly skilled at handling these issues.”
Recently, to help doctors with such issues – and, ultimately, to improve care – a project led by Dr. Walling has begun an assessment of the quality of care in hospitalized end-of-life patients. Dr. Walling and her collaborators are evaluating factors like communication among doctors and patients and the family, the adequacy of symptom management, and if patients’ stated preferences match the care they receive.
“We’re looking at things like whether a patient’s pain and other symptoms are being addressed in a timely fashion and whether patients’ preferences for care are being considered,” Dr. Walling explains. “The ultimate goal is to measure these processes like we measure processes in other fields, look at the results, and then review them with clinical leaders.”
In this way, improvements can be identified and recommended. “For example, we might enhance physician and nurse education to remind them that this is something they should be paying more attention to or develop intervention measures to improve care,” Dr. Walling says. “If, for example, there needs to be a more timely assessment and follow-up on symptom control, we might be able to do something like improve the electronic medical-record system to prompt physicians to make a more timely assessment. Focusing not just on prolonging survival but looking at quality measures of the patient experience,” she adds, “might be one way of changing the culture.”
The public conversation over the past year that has focused on these thorny issues began with a contention that much of the costly medical care that is delivered toward the end of life is wasted and that Medicare expenditures could be reduced if that care were somehow made more efficient. it is an assertion to which Dr. Rosenthal replies, “For us at UCLA, it is never an issue of resource utilization. Without a doubt, there are complexities involved when caring for people at the end of their lives that must be taken into consideration. but ultimately, whatever decision is made, it must be made for the benefit of the individual patient.”
Kathy A. Svitil is the lead science writer at the California Institute of Technology and a former writer and editor for Discover magazine.