Do-not-resuscitate orders, or DNR orders, are medical orders that instruct heath care providers not to provide cardiopulmonary resuscitation (CPR) in the event a person stops breathing or their heart stops beating.1 They’re typically set up in advance, prior to an emergency, after discussion with the patient and/or the patient’s family.
DNR status has been previously linked to severe illness, advanced age, poor disease prognosis and deteriorating health status with impending death,2 but during the COVID-19 pandemic, investigations suggest DNRs have been used improperly, including being assigned to people with learning disabilities without their knowledge or consent.
According to Edel Harris, chief executive at Mencap, a U.K. advocacy charity for people with learning disabilities, “Throughout the pandemic many people with a learning disability have faced shocking discrimination and obstacles to accessing health care, with inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices put on their files and cuts made to their social care support.”3
The Care Quality Commission (CQC), which regulates health and social care in England, is investigating the practice, but their preliminary report released in December 2020 suggests inappropriate DNACPRs may have caused avoidable deaths.4,5
UK Commission Reiterates Need for Individualized Decisions
March 30, 2020, during the early days of the pandemic, CQC issued a joint statement with the British Medical Association, Care Provider Alliance and Royal College of General Practitioners, issued to adult social care providers and general practitioners (GPs).6
They noted that during the pandemic, it was more important than ever to have personalized advanced plans of care in place, particularly for older people, those who are frail or those with serious health conditions — and that those plans be discussed with patients.
As long as the person has the mental capacity, “this advance care plan should always be discussed with them directly,” the statement noted, and in cases when this wasn’t possible family members or other appropriate individuals should be involved. As if foreseeing an inevitable problem, the statement made a point to highlight the need for individualized advance care planning decisions:7
“It remains essential that these decisions are made on an individual basis … It is unacceptable for advance care plans, with or without DNAR [do not attempt resuscitation] form completion to be applied to groups of people of any description. These decisions must continue to be made on an individual basis according to need.”
By October 2020, the U.K.’s Department of Health and Social Care had asked CQC to review how DNRs were being used during the pandemic.8
At the time, CQC said they had heard of cases where decisions were not made using a person-centered approach, and they intended to review advance care planning decisions made in hospitals, care homes and by GPs during the pandemic. While the final review is expected to be released in early 2021, interim findings were released in December 2020.9
Report Reveals Inappropriate Advance Care Decisions
CQC’s interim findings suggest that advance care decisions were made inappropriately during the pandemic due to a “combination of increasing pressures and rapidly developing guidance.” They noted:10
“Early findings are that at the beginning of the pandemic, a combination of unprecedented pressure on care providers and other issues may have led to decisions concerning DNACPR being incorrectly conflated with other clinical assessments around critical care.”
In one example, CQC noted that guidance intended to assess frailty as part of a wider clinical assessment may have been used as the sole basis for decisions. This mistake was reportedly corrected, with revised guidance released within five days; however, it’s possible that some people may still not be receiving proper care. According to the report:11
“DNACPR decisions and advance care plans should only ever take place with clear involvement of the individual, or an appropriate representative, and a clear understanding of what they would like to happen.
While there is no evidence to suggest that blanket approaches to DNACPR decisions are being used currently, people who use services and groups that represent them told CQC that early in the pandemic they or their loved ones received DNACPR decisions which were not based on their wishes and needs, and without their knowledge and consent. It is unacceptable for decisions to be applied to groups of people of any description.”
Inappropriate DNRs May Still Remain in Place
Mencap received reports in January 2021 that some people with learning disabilities had been told they would not be resuscitated if they became severely ill with COVID-19.12 People with disabilities in England had a 1.9 to 3.5 times greater risk of death from COVID-19 compared to people without disabilities, according to a report by the U.K.’s Office for National Statistics.13
Keri-Michèle Lodge, a learning disability consultant, told The Guardian, “The biggest factor associated with the increased rate of death from their analysis was living in care homes or residential settings.”14
Public Health England also found that people with learning disabilities were six times more likely to die from COVID-19 than the general population, and this rose to 30 times more likely among those with disabilities aged 18 to 34.15
Rosie Benneyworth, chief inspector of primary medical services and integrated care at CQC further noted that the pandemic risked magnifying inequalities in the care people receive and acknowledged that inappropriate DNRs may still exist:16
“It is unacceptable for clinical decisions — decisions which could dictate whether someone’s loved one gets the right care when they need it most — to be applied in a blanket approach to any group of people.
Sadly, in the experiences that people have generously shared with us there is very real concern that decisions were made which not only overlooked the wishes of the people they affected, but may have been made without their knowledge or consent.
… We have also highlighted the fact that it is possible in some cases that inappropriate DNACPRs remain in place – and made it clear that all care providers have a responsibility to assure themselves that any DNACPR decisions have been made appropriately, in discussion with the person and in line with legal requirements.”
Amnesty International Uncovers ‘Blanket Approach’ to DNRs
In October 2020, Amnesty International also reported inappropriate use of DNRs by GPs, care homes, hospitals and clinical commissioning groups (CCGs).17 In their report, the nongovernmental organization said they had received reports from care home managers that CCGs had asked them to insert DNAR forms into residents’ files as a “blanket approach.”18
Family members also told Amnesty International that their relatives had been asked to sign DNAR forms without understanding them fully.
One document issued by CCGs to 35 GPs, seen by Amnesty International, told practices, “Search your clinical system for any care home patients who do not have a resuscitation order recorded (either ‘not for’ or ‘for’ resuscitation) and put appropriate orders in place” and “Ask the [care] home to check they have resuscitation orders on every resident.”
The document also gave instructions for GPs to prioritize patients who did not have a “do not convey to hospital” decision in place, and even included a script to facilitate such discussions, which discouraged hospitalization:19
“Frail elderly people do not respond to the sort of intensive treatment required for the lung complications of coronavirus and indeed the risk of hospital admission may be to exacerbate pain and suffering. We may therefore recommend that in the event of coronavirus infection, hospital admission is undesirable.”
In response to the document, 98 care homes were contacted, leading to distress, as in some cases care homes were told no residents over 75 would be admitted to a hospital. A senior local figure speaking to Amnesty International expressed his dismay:20
“Discussions on advanced care planning should be warm and natural conversations. This is not how they should be done. One care home with 26 residents had 16 residents sign DNARs in a 24-hour period. It was distressing for staff and residents … Care homes felt like they were being turned into hospices, and being asked to prepare to manage deaths instead of managing life.”
DNR Patients More Likely to Die From COVID-19
Assigning a DNR to a person with a learning disability or in any case without their knowledge can be the difference between life and death, including in the case of COVID-19.
Researchers from Rutgers-New Jersey Medical School investigated the influence of DNR status on mortality in hospital patients who died with COVID-19, revealing that people who died with COVID-19 were significantly more likely to have a DNR order on admission than those who recovered from the illness.21
COVID-19 patients with a DNR also had a higher mortality rate than COVID-19 patients without a DNR, with researchers noting, “The risk of death from COVID-19 was significantly influenced by the patients’ DNR status.” Separate research has also revealed that the way a DNR is interpreted can affect a person’s care. The researchers wrote:22
“While the definition of DNR might seem straightforward, its interpretation in clinical practice can be complicated. In this study, most of the nurses understood the meaning of DNR. Yet their interpretations often indicated clinical situations in which a DNR order was misaligned with the plan of care or was misinterpreted as replacing it.”
Confusion about the definition and implications is exactly what researchers found when they examined care based on a person’s DNR designation. Direct care nurses from a large urban hospital participated in an open-ended interview to gather information.23 When the data were analyzed, the researchers found varying interpretations on how to carry out DNR orders that resulted in “unintended consequences.”24
Since DNR orders and other advance directives may open other decisions to interpretation, affect patient care and outcomes and, as has recently been revealed during the pandemic, may be put into place without knowledge or consent, it’s important that you educate others and advocate for yourself or your loved one if hospitalization or placement in a care home occurs for any reason.
This may be especially true if you have a loved one with a disability, including a learning disability. Even during “normal” times, an estimated 1,200 people with a learning disability die avoidably under care of the National Health Service annually.25 During the COVID-19 pandemic, potentially in part due to inappropriate use of DNRs, these numbers may be even higher.