Famed author and surgeon Atul Gawande, MD, came to the annual assembly of the American Academy of Hospice and Palliative Medicine (AAHPM) to urge attendees to spread their beliefs and practices across the field of medicine.
“We've had a 50-year experiment with medicalizing mortality, treating it as just another problem to be solved ... and it has failed,” he said in his keynote speech. Palliative care provides an alternative model that should be more widely offered, Dr. Gawande added.
“How do we think of the problem of scaling what you do?” he asked. “There aren't enough of you for everybody who is going to face serious illness and die.”
He encouraged the palliative care experts to train other clinicians in the techniques and approaches they use to communicate with patients about the end of life and improve their experiences in that time period.
Several speakers at the meeting, which was held in February in Philadelphia, did just that—offering advice on helping patients and families who are considering hip fracture treatment, withdrawal of life-sustaining therapies, or organ donation.
Orthopedic surgeons like to fix people's problems. But for hip fracture patients, it's becoming increasingly clear that it's often not possible, according to Elizabeth Ames, MD, program director for orthopedics at the University of Vermont Medical Center (UVMMC) in Burlington.
“As orthopedic surgeons, in the last 10 years, life has really changed. We can get people through the operating room quickly. We can get them through safely. We have changes in anesthesia. We have intensive care units. We have everything we need. But despite that, there has been no change in postop mortality for this demographic—the elderly patient with a low-impact hip fracture,” said Dr. Ames.
The mortality rate within a year of hip fracture is still 30%, and half of patients never regain their prefracture level of function, she reported.
These statistics led UVMMC to start a cooperative effort for hip fracture patients. Hospitalists join the orthopedic surgeons in evaluating patients on admission. Among other skills, hospitalists can help surgeons understand patients' medical comorbidities and the likely impact on life expectancy, Dr. Ames and others said.
Palliative care specialists are brought into the decision-making process about hip fracture treatment when needed. “I believe there's a place for very thoughtful conversation about palliative goals, and I also believe that perhaps orthopedic surgeons are not the best people to have that conversation,” said Dr. Ames.
But even orthopedists can help to give patients more realistic expectations about surgery, according to UVMMC orthopedic resident Amanda Moyer, MD. “Patients will ask, ‘Am I going to get back to doing all the things I was doing before?’ Something I like to be honest about is if you were using a walker to walk around beforehand, now you might need a wheelchair .... They tend to lose a functional level. You will probably not meet your goal of returning to all of the things you were doing before this injury,” she said.
The decision about whether to operate should be based on a patient's goals, since at this point orthopedists can operate on just about anyone. “The reality is that there are no hip fractures that we would not take to the operating room,” said Dr. Moyer.
The problem is that it's hard to give patients hard data about their options, according to ACP Member Ursula McVeigh, MD, a former hospitalist and palliative care physician at UVMMC, now a palliative care physician with Providence Alaska Medical Center in Anchorage.
“We really do not have a lot of evidence about what the best care is for people with nonoperative management, or even pain control or outcomes,” she said. About 8% of Medicare hip fracture patients are managed nonoperatively, and studies have shown that higher mortality is associated with non-operative management than operative, but that's confounded by the sickest patients opting out of surgery, she noted.
Some myths about nonoperative management can be dispelled, though. “You'll hear, ‘You'll suffer more with nonoperative management. You'll have horrible pain. You will get bedsores, bedbound.’ There's really not evidence for that,” said Dr. McVeigh.
One way to assess how patients would fare without an operation is to have them try it out. “If somebody's goals are ‘It'd be nice to sit up in a chair’ ... we'll premedicate with some morphine and have them get up in a chair and see how comfortable they are,” she said.
Physicians should also make sure that patients clearly understand the potential outcomes of either choice. “A lot of patients think the risk is dying on the table. I had a patient once who said to me, ‘That doesn't sound so bad,’” said Dr. McVeigh. “We don't want the goals of surgery to be a peaceful death unconscious.”
On the other hand, nonoperative management is not only for patients who are expecting death soon. The UVM team recently studied 38 of their patients who opted out of hip fracture surgery and found that almost half of them had restorative goals of care while the remainder had comfort goals. The former group lived longer than the latter and had better functional outcomes. “People who have nonoperative management can still have some pretty diverse goals of care, and their plan of care after the hospital can be pretty different,” said Dr. McVeigh.
Given the difficulty of predicting outcomes from hip fracture treatment, physicians' main goal should be to make sure that patients make a choice that they will not regret. “You don't want people to go back and say, ‘I wish I had fixed this hip or I wish I hadn't,’” Dr. McVeigh said.
Withholding or withdrawing treatment
The speakers in the session “A Practical Guide to Making Decisions to Withhold or Withdraw Life-Sustaining Treatment” tackled an even more sensitive conversation. Talking to patients and families about these decisions is so difficult that Danielle N. Ko, MBBS, LLB, and Craig D. Blinderman, MD, recently published a textbook chapter and a checklist on the subject (see sidebar).
During their AAHPM talk, they offered a few additional pieces of advice. Remember that withdrawing and withholding treatment are ethically and legally equivalent, even though they may feel different to physicians, they said.
“Clinicians really feel a greater psychological and emotional burden when they are withdrawing treatment than withholding it, because death usually follows much more quickly,” said Dr. Ko, who is a family physician and palliative care doctor at St Vincent's Hospital in Melbourne, Australia. But both actions are judged based on a physician's intentions and the interests of the patient, which are equivalent, she noted.
Physicians should also remember to think, and talk, about this process as withdrawing life-sustaining treatment, not withdrawing care, added Dr. Blinderman, who is director of the palliative medicine service at Columbia University Medical Center/NewYork-Presbyterian Hospital.
“When you hear language like this spoken in the hospital, correct it immediately, because I think this inherently creates cultural biases, and it creates a linguistic error that I think ultimately gets transmitted to patients and families unconsciously, if not consciously,” he said.
Avoiding cultural bias is a major challenge in this area, and not only in the traditional sense of culture. “It's really easy to think about culture when you're faced with someone who speaks differently than you or looks differently or comes from a different socioeconomic background. But we have to all remember that we're trained in the medical, Western health care model ... [with] things we hold dear, such as quality of life over quantity of life. We need to keep in mind that our patients may not share the same values,” said Dr. Ko.
Individual values also underlie a concept that's frequently used in decisions about life-sustaining treatment—futility. The problem with futility is that it's a very vague concept. “There's no accepted definition of futility. Do we mean it's physiologically futile or it's futile in terms of you're not going to gain any improvement? ... Whichever definition you choose to employ in any given case, that's a value judgment in itself,” said Dr. Ko.
Futility is also sometimes used as an excuse to avoid discussing a difficult decision. “The conversations that are frequently needed to bridge the gap between unrealistic family expectations and the clinician's prognosis can often be sidetracked by saying, ‘You know what, it's futile. We're the doctors and we know best,’” Dr. Ko.
Physicians shouldn't err too far in the other direction, though, and force patients and families to make specific decisions beyond their expertise. “The patient is the expert on their values, goals, and beliefs, but we're the experts on utilizing medical treatments,” said Dr. Blinderman. “We get ourselves trapped by putting the decision too much on family members ... Rather than saying, ‘Would you like us to continue x?’ or ‘Should we do vasopressors?,’ the decision to continue pressors should be based on what are the goals of this patient's care. We don't have to ask the family that specific question.”
The answers to specific questions are also unlikely to come from advance directives, according to Dr. Blinderman. “These are documents that are helpful, but I think we need to put them into the context of the current clinical situation. You have to almost interpret them, because oftentimes they're boilerplate instructions that don't have a lot of relevance to very specific clinical scenarios,” he said.
At that point, and throughout this process, clinicians need to focus on the issues from the patient and family's point of view, putting aside their own preferences and moral frameworks. “We need to really explore from the patient and family perspective first, before we have any inherent judgments about whether or not to continue or withdraw life-sustaining treatment,” said Dr. Blinderman.
He offered an additional tip for bringing these issues to light at a point when there's plenty of time to address them. “If you actually have goals of care on the problem list, imagine how that would change the discussion,” Dr. Blinderman said. “Every day it's going to provoke a conversation and force the issue upon everybody, rather than having to face it when you're in crisis mode.”
Organ donation is another end-of-life issue that physicians would do well to consider earlier in the care process, according to experts at AAHPM.
The most important thing clinicians can do to preserve the opportunity for organ donation is notify their local organ procurement organization (OPO) as soon as possible when patients have devastating neurologic injury or the withdrawal of life support is being considered, said Dana Lustbader, MD, a palliative care specialist and professor at Hofstra North Shore-LIJ School of Medicine in New York.
“Can we ask ourselves in the ICU ‘Is death likely to occur in a week?’” said Dr. Lustbader. “If you wouldn't be surprised if the person died now or in a week, you make that call [to the OPO]. There's never a harm in notifying the OPO about a potential donor, as the process for determining donor suitability can take time. If we call at noon for a potential ventilator withdrawal and we're going to do this withdrawal at 2 o’clock, there's no opportunity for donation.”
The session focused largely on donation after cardiac death (DCD), which—as opposed to brain death donation—occurs when a patient or legal surrogate requests that all life-sustaining treatments be stopped and asks to donate, and cardiac death is likely within an hour.
She offered some general criteria for suitable DCD donors: age 60 or under, good hepatic or renal function, nonrecoverable illness or injury, do-not-resuscitate status. But treating clinicians should not disqualify potential donors on their own.
“We shouldn't rule out HIV, advanced age, or even cancer, because that's the OPO's job. Hep C organs go to hep C recipients now, HIV organs the same thing ... . Even cancer that's been quiescent for 10 years, those are suitable donors,” said Dr. Lustbader.
Physicians should also leave it to the OPO to raise the issue of organ donation with the patient or family. “The consent rate plummets when physicians—well-meaning physicians from the palliative care/ICU team—pre-approach the family requesting organ donation. No matter how skilled you are, the consent rate drops because we suddenly lose trust,” she said.
The need to notify the OPO early yet not say anything to the patient or family can make treating physicians feel awkward. “When the OPO is there, there's always this, ‘Don't tell the family they're here,’” said Dr. Lustbader, offering an alternative way to think about the issue: “It's just part of what we do, like you might put the cath lab on notice that there's someone coming in with chest pain, but we don't generally tell the family.”
On occasion, clinicians might have to allude to the issue to give the OPO time to get involved. “Plant the foundation for families that there are certain things we have to do before we take the tube out and we have other colleagues we have to call and there are decisions we have to make,” Dr. Lustbader said.
Once the OPO has arrived, although the treating physician shouldn't lead the conversation, he or she should be present for it. “You say, ‘I'd like to introduce you to Joe from the OPO. He's going to talk to you.’ And then you sit there,” said Michael Frankenthaler, MD, chief of palliative medicine at Westchester Medical Center in New York.
“The families have a ton of questions and they have a relationship with you now. You want to support the family and let them know it's OK whatever they decide,” he added.
One concern of families, and sometimes even physicians, is that potential DCD donors are brought to the operating room for the withdrawal of all life support; the family and staff then wait for death to occur. “Often, OR staff and anesthesiologists aren't comfortable bringing patients down to the OR to die there,” said Dr. Lustbader.
However, she offered reassurance that the setting doesn't have to make the situation more traumatic. “With dim lights and comfortable chairs, you can sort of nonmedicalize it,” Dr. Lustbader said, urging clinicians not to let the operating room be an obstacle to organ donation.
“I worry that we don't do everything possible to make donation happen for families that would get peace knowing that they've saved lives in this really horrible, awful situation they're in,” she said. “We see donor families come back to meet organ recipients a year later. It is so incredibly powerful. One donor mother kissed the chest of the man who received her son's heart.”