machado: are we making educated decisions about dnr orders?
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instead of dnr, some healthcare facilities use and, which stands for "allowing natural death," and implies a more peaceful and calm passing. getty
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“he didn’t like the idea of suffering to die and he chose fortunately/unfortunately (i don’t know now) to suffer to live.”
this was part of a letter that i received from a reader caring for his 60-something younger brother who is living with chronic obstructive pulmonary disease, an uncomfortable progressive lung condition that makes breathing difficult.
the reader shared that when his brother recently landed in hospital with complications, doctors told him that his brother had signed a do-not-resuscitate order. and though a supporter of compassionate dying, the reader admitted with deep guilt that in conversation with his brother, he discussed what he believed to be the implications of dnr — that absolutely no help would be provided if his brother’s heart stopped. understanding this to mean suffering while dying, his brother retracted the dnr order, opting instead for all aspects of resuscitation if needed. according to hamilton health sciences (hhs), this includes, cpr, defibrillation, blood transfusions, breathing machines and medications to increase blood pressure.
he said his brother went on to endure extraordinary suffering in the five months after his hospitalization, and is now at home, requiring daily care.
“i am torn if i convinced him to disengage the dnr for his benefit … or formine and our family,” he wrote. “though a longtime believer in maid i’ve inadvertently become a hypocrite.”
such a harsh word for someone who obviously loves and cares for his sibling, and who — like many caregivers — seems to be doing the best that he can. (add being exceptionally hard on oneself to all that caregiving already entails, like exhaustion, stress, frustration, sadness, heartbreak …) after all, it’s completely understandable to have a difficult time accepting a loved one’s choice to not be resuscitated — it can feel horrible, and not right, as if you are giving up, that you don’t care about them, or maybe that you have lost hope.
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dnr is sometimes called and (allowing natural death) to avoid negative connotations
but perhaps there’s more than just grief driving the gut-wrenching emotions that come with a loved one’s dnr decision. certainly, dnr orders are not exactly fan favourites, having long been at the centre of hotly-debated processes and protocols at health care facilities. there have cases in which doctors have included dnr orders in patient files without the patient’s — or family’s — knowledge, doctors who ignore dnr orders as well as the tendency for some health care professionals to interpret a do-not-resuscitate directive as meaning not to treat. a 2021 study (among others) found that not only did the death rate double among surgical patients who had signed a dnr order compared to those who did not, but those who requested not to be resuscitated also received less care from staff, often not being offered antibiotics, or medical procedures.
in fact, the negative connotation of dnr is such that some health care facilities are shifting the language to and, which stands for “allowing natural death” and implies a more peaceful and calm passing as opposed to the sense of foreboding and crisis associated with dnr.
beyond how dnr orders are construed — and misconstrued — there’s also the critical fact that many health care providers find explaining dnr and all it entails to patients and their families extremely difficult. some say that it causes them emotional distress and suffering. of course, the result is patients and, to some extent, families, left to their own devices when it comes to both deciding and interpreting how life ends.
when my own brother told me that he too had signed a dnr form after a recurrence of liver cancer, i suppose a more helpful response would have been that i supported his decision, and that i respected it. but from my perspective, a dnr order was terrifying. it looked a little like this: heart stops, can’t breathe, panic, suffocate and die. all this, potentially alone. so instead, i blurted out something optimistic, like, “ok, thanks for telling me, but we’re not going to need it.”
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in other words, “i don’t want you to die.”
then he was in the icu and things were looking grim. like the man and his brother, my mom was simply reminded of the dnr order; there was no counsel provided, no opportunity to ask questions, no one to explain exactly what it meant. and when he died of cardiac arrest, the doctor who called the time of death pulled up a blue plastic chair to sit beside me outside the room where my brother’s body laid, and said that it had been a good morning, that minutes before his heart stopped, my brother had sat up, asked for green jello and shared a joke with one of the nurses. he said that they did all they could. say more, i said. was someone with him, did anyone hold his hand or try to comfort him as he died? he didn’t say anything.
it wasn’t until later that i learned that a dnr order isn’t an all-or-nothing directive. contrary to what many people think, it isn’t — or shouldn’t be — about doctors doing nothing when a patient is in distress.
a dnr order isn’t an all-or-nothing directive
there are also choices that can be made — often depending on your health condition, but choices, nonetheless. hhs recommends talking to your health care team to determine which, if any, elements of resuscitation you want. for example, you may want cpr in the event of heart failure, but not to be attached to a breathing machine. these discussions are also an opportunity to learn about the potentially devastating implications of these choices, such as the fact that about half of patients whose hearts are successfully restarted will have some form of brain damage.
it’s impossible to say whether or not a dnr order was the best choice for the man’s brother. what is clear, though, is how important it is for patients and caregivers to be empowered to make these critical life and death decisions from a place of knowledge and education, instead of fear. especially so that in the end, everyone can rest easy in the belief that yes, everything that could have been done, was done.
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lisa machado is the executive producer of healthing.ca.
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