“Secret do-not-attempt cardiopulmonary resuscitation (DNACPR) orders,” “imposed without family consent,” and “unforgivable.” These are just a few of the U.K. newspaper headlines that appeared after an audit of 9,302 patients who died in National Health Service (NHS) hospitals conducted by London’s Royal College of Physicians revealed that for 19% of cases, there was no evidence that the DNACPR order was discussed with the patient’s loved ones. In 16% of cases, there was no documentation of a discussion with the patient.1
“The DNACPR question was just one of dozens we asked. But, of course, the press, TV, and radio in U.K. picked up on it. It was widely covered, with a quite negative slant,” says Sam H. Ahmedzai, FRCP, the lead author on the study and the clinical lead for the Royal College of Physicians end-of-life care audit committee. Ahmedzai is emeritus professor in the University of Sheffield’s Department of Oncology and Metabolism.
The audit, which had been commissioned by the Healthcare Quality Improvement Partnership for NHS England, covered two aspects of end-of-life care in hospitals. One examined the protocols, policies, governance, and training aspects of end-of-life care at 140 acute NHS hospitals in England. The second was a retrospective case notes audit of the actual clinical care of patients who died in those hospitals in May 2015.
Ahmedzai appeared on numerous TV and radio shows explaining that DNACPR related only to CPR, and that for the large majority of people who died in English hospitals, there would have been no valid indication for CPR.
“At least in the British health system, we would not routinely offer CPR to people dying from multiple diseases of older age, frailty, and most cases of advanced cancer,” says Ahmedzai. For the 19% of families who were apparently not informed of the DNACPR decision, Ahmedzai admitted there was no excuse. “Maybe they were notified, but the documentation was just lacking. Clearly, we need to do better there,” says Ahmedzai.
The news coverage revealed a common misconception: that DNACPR orders meant that no care at all was provided. “We saw plenty of evidence that dying patients did, in fact, get good bedside care,” Ahmedzai says. This included attention to hydration and feeding needs, symptom control, and support for their families.
“Some aspects of care, such as assessments of holistic needs and attending to spiritual and cultural needs, were not done so well,” says Ahmedzai. “There were considerable variations between hospitals.”
Craig M. Klugman, PhD, a professor in the Department of Health Sciences at DePaul University in Chicago, takes issue with the widespread negative reaction to the report. “It actually was quite a positive report showing improvements in the U.K.’s treatment of dying patients and their family. This demonstrates how headlines can bias our reactions,” says Klugman.
Klugman notes that it’s only certain that no conversation took place in 3% of cases, but the reason why is unknown. “Most likely it was because the patient or family did not want a conversation,” he says. “What also is not mentioned in this headline is that this rate is an improvement of 10% over the 2013 audit.”
The 2016 audit concluded that, compared to 2013, there had been “a broad front in improvements in nearly all aspects of care of the dying.” Media coverage, however, focused on the finding that in 19% of cases in which a DNACPR order was written, there was no documentation that this decision was discussed with the patient’s family.
“Unfortunately, the lay press has interpreted this as meaning that, in approximately 20% of cases, there was no discussion of the decision not to perform CPR,” says Andrew Courtwright, MD, PhD, a physician at Massachusetts General Hospital’s Institute for Patient Care.
There is no way of knowing whether DNACPR was actually discussed in these cases, but not documented. “There are several reasons to suspect that the actual number of DNACPR orders made without discussion were significantly lower than 19%,” says Courtwright.
In 95% of cases in which dying was not unexpected, a discussion of this fact with the patient’s surrogate was documented. “It is unlikely that, a fifth of the time, these conversations contained no mention of a DNACPR,” says Courtwright.
In 2014, the Court of Appeals held that failing to discuss the DNACPR order with a patient’s surrogate was a violation of the European Convention on Human Rights. This created a significant disincentive for physicians to write such orders without surrogate notification, says Courtwright. “What seems most likely is that documentation of these conversations has lagged behind actually having the conversations,” he says.
Caroline A. Vitale, MD, AGSF, director of the Geriatric Medicine Fellowship Program at University of Michigan Health System in Ann Arbor, points out that goals of care discussions are commonplace in the U.S. and often include discussion of code status.
“Patients’ care preferences are elicited or sought to be understood from prior conversations, written documents, and/or a documented patient advocate,” says Vitale. It would be extremely rare for a DNACPR order to be placed in the medical chart without the patient’s family or surrogate decision-maker knowing about it, adds Vitale.
In contrast, says Ahmedzai, DNACPR decisions are the norm in English hospitals, and patients are rarely involved. “This is mainly because we leave it too late for direct discussion with them,” he explains. Once it had been documented that the patients were recognized as dying, half had died within the next 36 hours. “Families are normally involved, but there is unacceptable lack of consultation with a sizeable minority,” says Ahmedzai.
Courtwright says there is little disagreement from an ethics standpoint that patients or their surrogates should be involved in some form in a discussion of DNACPR orders. “There remain significant international differences, however, in the extent to which physicians versus patients or surrogates are felt to be the appropriate final arbiters of the DNACPR order in cases of disagreement,” notes Courtwright.
A number of court cases in the U.K. have supported the idea that, while involving patients and surrogates in the decision-making process is essential, whether to perform CPR is ultimately a medical decision. “In contrast, in the United States, DNACPR orders are rarely, if ever, written over the objection of patients or surrogates,” he says.
The media interest also revealed that the British public don’t really understand that DNACPR orders apply only to CPR. Many wrongly assume this means all forms of care are withdrawn. “That may be partly because of some notable cases which went to court in recent years, where competent patients had DNACPR decisions placed on them unilaterally by doctors, and they and their families weren’t even informed,” says Ahmedzai.
James A. Tulsky, MD, chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and chief of the Division of Palliative Medicine at Brigham and Women’s Hospital in Boston, says if there were situations in which physicians wrote unilateral DNACPR orders and did not inform the families, “that is simply wrong and cannot be condoned.”
However, there are other possible explanations for this outcome. “First, there may be many situations in which goals of care were discussed and a plan of care was agreed upon for which resuscitation would clearly not make sense,” says Tulsky. In such cases, the DNRCPR order wouldn’t be specifically mentioned.
For example, if everyone agrees that a patient is to receive comfort measures only, and that the goal is not to escalate care or go to the ICU, it would not necessarily be wrong to not explicitly mention the DNACPR order. “It is simply a technical detail that carries out the goals of care,” explains Tulsky.
There may have been conversations where, in fact, the physician did mention the DNACPR order but the family either did not remember, or didn’t understand, what the doctor was referring to.
“Many studies like these show that patient and family recall is far from perfect,” says Tulsky. “While this does not excuse poor communication, it leads to a less sinister conclusion.”
REFERENCE
- Royal College of Physicians. End-of-life care audit – Dying in hospital. London: Royal College of Physicians, 2016.
SOURCES
- Sam H. Ahmedzai, FRCP, Emeritus Professor, Department of Oncology and Metabolism, School of Medicine and Biomedical Science, The University of Sheffield. Email: [email protected].
- Andrew Courtwright, MD, PhD, Institute for Patient Care, Massachusetts General Hospital, Boston. Phone: (617) 732-6770. Fax: (617) 582-6102 Email: [email protected].
- Craig M. Klugman, PhD, Professor, Department of Health Sciences, DePaul University, Chicago. Phone: (773) 325-4876. Fax: (773) 325-8430. Email: [email protected].
- James A. Tulsky, MD, Chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute/Chief, Division of Palliative Medicine, Brigham and Women’s Hospital, Boston. Phone: (617) 582-9201. Email: [email protected].
- Caroline A. Vitale, MD, AGSF, Clinical Associate Professor, Director, Geriatric Medicine Fellowship Program, University of Michigan Health System, Ann Arbor. Phone: (734) 845-3072. Fax: (734) 936-1884. Email: [email protected].
An audit of 9,302 patients who died in National Health Service hospitals conducted by London’s Royal College of Physicians revealed that for 19% of cases, there was no evidence that the do-not-resuscitate order was discussed with the patient’s loved ones.
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