With very few exceptions, patients have the right to not be resuscitated — and healthcare providers have the duty to respect those wishes, says Michael S. Ewer, MD, JD, PhD, professor of practice and director of the Health LLM program at University of Houston Law Center and former chairman of the Institutional Ethics Committee at MD Anderson Cancer Center. “But it isn’t always as clear as it may seem,” says Ewer.
Ewer gives the example of a patient with stable but incurable lung cancer who asks to have a do-not-resuscitate (DNR) order placed for him, and the doctor writes the order. A week later, the patient has an anaphylactic shock due to a medication administration while getting an imaging study. It seems unlikely that the patient intended the DNR order to apply in such circumstances.
“But are we legally protected if we do not respect the DNR order?” asks Ewer. Some advance directives offer physicians some room for interpretation, with language such as, “In the event that resuscitation will only delay the moment of death, I ask that I not be resuscitated.” Based on this, a physician may then write the order not to resuscitate in the medical record. On admission, the order then is written as “Do Not Resuscitate.” “Once the order is in the chart, the conditional wiggle room is no longer apparent,” says Ewer. While the patient’s advance care planning documents may offer some guidance, the physician order, once written, is something to be followed like any other order in a patient’s record.
Sometimes the DNR order is reversed for a procedure, only to be reintroduced later, requiring a new patient contact to re-initiate the order. “Sometimes, this adds to the trauma a patient is already experiencing,” notes Ewer.
In some cases, resuscitation was undertaken on several occasions on the same patient, despite healthcare providers’ confidence that a meaningful outcome was exceedingly unlikely. As the degree of uncertainty becomes greater, the decision should increasingly be made by the patient, says Ewer. Yet sometimes there is a very strong consensus that resuscitation cannot succeed and may add to the physical burdens of the patient (and also possibly add to the family’s physical and emotional burdens). In Ewer’s own clinical practice, bringing up this topic gradually was most effective. The physician might say to the family, “While we are doing everything we can at present, if things continue to deteriorate we may reach a point where our continuing plan may have to change from trying to buy time for our treatments to work to making our patient as comfortable as possible.” A day or two later, the physician might say: “It is starting to look less and less like we will succeed in turning this around.” “Then, after the family has time to realize that this is not being a rash change, the DNR order may cause less trauma for the family,” Ewer explains.
Clinicians may feel that they are providing interventions that are useless and harming the patient and that the family is compelling the team to provide care that they feel is clearly inappropriate. In rare instances, such cases may reach the threshold of becoming unethical. “In some instances, unilateral DNR orders may be reasonable. Although controversial in some instances, unilateral DNR orders seem not to raise fundamental ethical issues,” says Ewer.
Nevertheless, hospital policies should follow state law, as a unilateral DNR order may be in conflict with the law. “Ethicists and in-house counsel must be aware of legal requirements and ensure that the institution and clinicians adhere to specific requirements,” says Ewer. In jurisdictions where a unilateral DNR order is permitted or where a futility policy is invoked, letting the family know that the decision has been reviewed by the Ethics Committee or members of the Ethics Department may be of comfort to the family. Legal protections and clear procedural guidance in such contingencies must be available to protect the healthcare team if a unilateral DNR is being considered, adds Ewer.
If the patient does not have a DNR order in place and the family refuses to consider it, ethics consults to review the appropriateness of a DNR order may be helpful in some instances. “The threshold to adjudicate in favor of a DNR order against express desires is a rare event. Such events may be best implemented with ongoing review as the patient’s condition evolves,” says Ewer.
In some instances, family members get mixed messages leading to confusion. For example, if a specialist seeing a dying patient tells the family that the kidney parameters are “much improved” after dialysis in the case of someone with end-stage cancer, the family may get the impression that resuscitation definitely should be undertaken, since things are improving. “Unified messages with continuing realistic prognostic information may play a key role,” recommends Ewer.
Family refusals to consider changing a patient’s status to DNR sometimes are rooted in a misunderstanding about cardiopulmonary resuscitation (CPR) itself. “The public has an erroneous belief about the efficacy of attempted CPR,” says Mary Faith Marshall, PhD, HEC-C, director of the Center for Health Humanities and Ethics and director of the Program in Biomedical Ethics at the University of Virginia (UVA) School of Medicine. Marshall is also co-chair of the UVA Health System Ethics Committee.
“What happens on medical TV shows, when there are attempted resuscitations, is almost the exact opposite of what happens in real life,” explains Marshall. Many people assume CPR is almost always effective. In reality, it is unsuccessful in the vast majority of cases. During goals of care conversations with the family, providing actual data on survival rates provides clarity.
“How can you make an informed decision if you don’t have accurate information?” asks Marshall. Clinicians also use the term “do not attempt to resuscitate” to convey a realistic picture — an attempt will be made but it’s likely to be unsuccessful.In Marshall’s experience, overly aggressive care at the end of life is one of the biggest causes of moral distress in clinicians. “They feel like they are harming patients,” says Marshall. For clinicians, having a due process policy for care that is potentially medically and ethically inappropriate is also important. UVA implemented such a policy in 2018, and has invoked it only twice. “It’s a policy you hope to never invoke,” says Marshall. Clinicians are required to follow multiple steps, including making a good faith effort to transfer the patient, obtaining an ethics consult, and getting a second medical opinion. If all are in agreement that the care is inappropriate, the case is reviewed by an interdisciplinary review committee. If the committee agrees, then a unilateral DNR is ordered, and life-sustaining treatment is withdrawn or withheld.
In almost all cases, though, the family and clinical team do come to a consensus about the patient’s DNR status. “We’re usually able to work it out along the way — which is exactly what you want to have happen,” says Marshall.
