Most patients receiving end-of-life care want to avoid aggressive attempts to prolong their life, but medical culture and practices often contradict these wishes. Part of the problem is due to confusion surrounding do-not-resuscitate orders. Here’s what patients really need to know about the “no code.”
From the time they’re in medical school, doctors are taught to respect and preserve the lives of their patients. But what happens when saving a patient’s life means contradicting his or her wishes? Some 80% of people say they want nothing to do with aggressive life-saving measures, which are often invasive, painful, and costly. When these measures do extend a patient’s life, it is often at the expense of that patient’s quality of life, and research suggests that these measures do not translate to lower mortality rates.
Observations such as these underlie one of modern medicine’s most infamous clinical contradictions: If they themselves were facing a terminal illness, nearly 90% of physicians would choose a do-not-resuscitate—aka “no-code”—order, to forego high-intensity interventions like CPR, electric shock, and intubation tubes. Yet these same physicians routinely deliver such care to their patients, extending their lives at any cost.
As a patient, it’s important to understand what high-intensity interventions entail, and why doctors feel compelled to perform them, notwithstanding their personal wishes. Thankfully, the disconnect between physician and patient is a problem with no shortage of solutions.
Called DNRs for short, do-not-resuscitate orders are medical orders instructing healthcare providers and first responders to withhold aggressive life-saving techniques when a patient’s breathing or heart stops. DNRs, which are put in place before a medical emergency occurs, are typically signed by physicians after consulting with patients who are suffering from a terminal illness or other serious medical condition, and/or their families and proxies (such as a health care power of attorney). It’s important to note that DNRs do not provide instructions for other treatments, like pain relief or medicines that aren’t related to resuscitation.
Unless instructed by a DNR order, or the specific ethical guidelines of a jurisdiction, physicians will do their best to keep a patient alive. This typically involves techniques like cardiopulmonary resuscitation (CPR) or advanced cardiac life support (ACLS). Other advanced measures can include chest compression, defibrillation, artificial ventilation, the insertion of an oral or nasal airway, tracheal intubation, electric shocks to the heart, and advanced resuscitation drugs such as vasopressors, antiarrhythmic agents, and opioid antagonists.
They’re referred to as “high-intensity” interventions for a reason: they’re designed to bring a person back from the edge of death. But they’re also known to result in broken ribs, fractures, ruptured spleens, liver injuries, and upper airway complications. These interventions, in other words, can save a patient’s life, but often at grave expense to the patient’s quality of life.
These interventions also place an enormous financial burden on patients and social insurance programs. In the U.S., around 25% of the total Medicare budget is spent on the final year of life, and upwards of 40% of those expenditures go to a patient’s final 30 days. Much of this money is spent on efforts to maintain and prolong life when the quality of life is extremely poor, such as when a patient is dependent on external life support.
As reported in a 2014 study by geriatrics and palliative care expert Melissa Garrido of Mount Sinai Hospital, terminally ill cancer patients who signed DNRs experienced a greater quality of life in the week before death. Other research has found that there is an overwhelming desire among most people to die a “natural” death; a recent survey in Canada showed that upwards of 90% of people, when asked where they’d like to die, said at home, or close to nature. Only 10% responded that they would like to die in a hospital or nursing home.
Last year, a survey showed that the vast majority of doctors would forgo high-intensity interventions for themselves; of the 1081 physicians surveyed, 88.3% opted for do-not-resuscitate status. A similar survey, conducted in 1989, yielded comparable figures. These numbers raise an important question, which lead researcher Vyjeyanthi S. Periyakoil, a specialist in geriatrics and palliative care at Stanford University School of Medicine, poses in her report: “[W]hy are doctors choosing care for themselves that is very different from what they provide to their patients?” She offers four major explanations, which warrant a lengthy citation:
Firstly, it is likely that doctors recurrently witness the tremendous suffering their terminally ill patients experience as they undergo ineffective, high intensity treatments at the end of life and they (the doctors) consequentially wish to forego such treatments for themselves. Second, doctors tend to be very optimistic and overestimate the prognosis and life-span of their patients. This results in escalation of high burden technological interventions until it is clear to all stakeholders that the patient is dying. Sadly, this clarity often comes in the last few hours to days of life, resulting either in terminally ill patients experiencing highly medicalized death in hospitals or in very late referrals to hospice care. Accurate methods of prognostication will help both doctors and patients structure the care-plan based on more realistic estimates of patient’s anticipated lifespan.
Thirdly, an important factor influencing the current state of healthcare is the culture of modern biomedicine with its default set to maximal interventions for all patients, irrespective of the effectiveness of doing so. This may foster implicit biases in doctors causing them to override their patients’ autonomy when the patients’ choices are in conflict with what the doctors believe will benefit the patient. While data show that early palliative care is beneficial to patients and families, much work needs to be done to incorporate palliative care into the genome of modern biomedicine. Effort needs to be directed at creating a system infrastructure that automates the seamless and early integration of palliative care into the care of all patients with serious illness.
Finally, the current fiscal system rewards hospitals and doctors for medical procedures and providing high-intensity care to terminally ill persons and does not reimburse them for conducting prophylactic conversations that elicits values and goals of care and what matters most to patients and their families at the end of life.
There are other, related factors, as well, including a lack of full patient awareness and understanding of Advanced Directives and DNRs. A recent study conducted in part by the Department of Family Practice at the University of British Columbia showed that, while most people are familiar with DNRs, only a fraction reported having conversations about end-of-life decisions with an actual healthcare provider. As the researchers concluded, “Disparity between patient preferences and experiences suggests that family physicians can and should initiate DNR discussions with younger and healthier patients.”
It’s obviously important to properly educate patients about DNRs; failure to do so can result in some serious consequences. As noted in a 2011 study led by Mount Sinai Hospital’s Jacqueline K. Yuen, many patients are being “deprived of the opportunity to make informed decisions regarding resuscitation.” As a result, “CPR is [being] performed on patients who would have wanted it withheld or are harmed by the procedure.”
Part of the problem, say the Mount Sinai researchers, is that discussions don’t occur frequently enough, or happen too late in a patient’s life. A 2012 study that investigated the presence and timing of DNR orders for imminently dying patients in VA Medical Centers found that just shy of 64% had an active DNR order at time of death. That only around one-fifth of these orders were written more than a week before the patient’s death suggests end-of-life decisions are usually only formally arranged in the final days of a patient’s life. The same study found veterans with a family member present at time of death, and those who received pastoral care visits, were more likely to have DNR orders—an observation that points to the importance of communication not only between doctors and patients, but between doctors, their patients, and their patients’ surrogates.
In their report, Yuen and her colleagues conclude that existing lines of communication are inadequate. “Many physicians fail to provide adequate information to allow patients or surrogates to make informed decisions and inappropriately extrapolate DNR orders to limit other treatments,” they write. To fix these problems, the researchers propose “changing the hospital culture, reforming hospital policies on DNR discussions, mandating provider communication skills training, and using financial incentives.”
But these changes will, of course, take time. For now, the onus remains largely on patients to ensure that lines of communication regarding their end of life decisions, and the decisions of their loved ones, are not only active, but active early.
Illustration by Tara Jacoby