Code Status and Living Wills. . . And Why They Might Not Matter.

If you’ve ever been admitted to a hospital, you (hopefully) were asked questions about your “code status”. Though it was likely not put in those words, patients are routinely asked what they would want to have done if there were a “code” situation. The code status is essentially a standing order that instructs the medical team what to do in case a patients heart were to stop or breathing became distressed.
Recently my health care facility adopted a new approach to addressing code status. Instead of using the traditional DNR status, we are replacing that term with the term “Allow Natural Death” (AND).  The push to change from Do Not Rescucitate (DNR) to Allow Natural Death (AND) began as a movement rooted in the 1990’s and attributed to  Reverend Chuck Meyer who felt that the current Do Not Resuscitate (DNR) order was inadequate. He proposed that rather than using a negative phrase (DNR) that describes what will not be done, a positive phrase (AND) which describes what will be done, will be more likely to be accepted by families. He reasoned that families struggle with the decision to remove care, and worry that their loved one will be left to suffer if they changed the code status to DNR. He thought that the change to AND will both provide reassurance that their family member will be kept comfortable, and that the change to a kinder and more positive wording is more likely to be accepted by families who are struggling with a difficult decision. AND detractors argue that the change is little more than semantics. They say that there is nothing inherent in the AND term itself that implies that a patient will be kept comfortable on their way to death.

Allow Natural Death proponents have argued that the change in wording is more than just a matter of semantics. I find this point debatable, however if anything the emergence of the  AND movement highlights the current failures of the medical system to adequately address the need for better communication with patients and their families around end of life issues.

Though end of life issues are not new, they are increasingly common. While modern medicine has prolonged life, and public policy has decreased the risk of death from accidents and many preventable diseases, so too has modern medicine effectively “compressed” illness (as argued here). This means that the average person today lives longer with multiple chronic conditions without being adversely affected by them. It is often not until the last few years of life that a person is adversely affected by their chronic illnesses to the point that they are not able to carry on in the fashion that they are accustomed (i.e diseases and their associated morbidity are now delayed and essentially compressed into the last few years of life with significantly reduced quality of life). From this point, illness can often progress quickly, an individual may undergo increasing amounts of medical care that escalates in its intensity, with the affected individual often trying to get back to “the way I was before”. To my knowledge this widespread, precipitous escalation in medical services during the last few years of life is a relatively new phenomenon in the arena of medicine.  Unfortunately it is often not paired with meaningful discussions surrounding realistic expectations for one’s care as well as a course of action if those goals can not be met

The unfortunate situation is that modern medical care (particularly my line of work. . . critical care) is often too complex to be condensed into a simple 3 word statement. Most people, if asked while they are relatively healthy, whether they would want to be maintained on a machine would respond with a resounding “NO!”. It’s fair to say that most healthy people who are asked such a question about being in a hopeless situation in which they were facing certain death would want to be kept comfortable. They would not want to worry about suffering needlessly in the face of death. The wording in living wills most often reflects this sentiment, with statements like “I do not want to kept alive if there was no hope”. But here’s the problem with that line of thinking. While death is certain in the long term, modern medicine has fortunately made it so that death is rarely certain in the short term, thus rendering many a living will obsolete. When a person is facing the possibility of death or a myriad of medical options to try to avoid it, most people will choose the later, irrespective, of how calm, comfortable, peaceful, or painless a death you may try assure them.

Let’s take a look at a sample case, John K., an 80 year old man with severe heart failure. His cardiologist has told him that there is nothing more that can be done to improve his heart condition. He and his family understand that his remaining life span can likely be measured in a matter or months to a a few years. Nevertheless, he continues to enjoy his life, he is able to spend time with his family in a meaningful way. He has a living will and has instructed his family that if he has another heart problem, he does not want further treatment. His living will states that he does not want life support if there is “no hope”.
Unfortunately Mr. K.  is admitted to the hospital with pneumonia, and is comatose. The medical team informs his family that he has a 20% chance of surviving this if he is placed on life support, and virtually no chance of surviving if he is not. They discuss with the family the high likelihood that even if he survives, he will be very weak, and will probably require help with basic activities such as  walking and going to the bathroom, if he were to survive. Should he recover from this episode he may require admission to a nursing home because he will require care around the clock until he gets his strength back, though even that much is not certain.
The family says that he would not want to be put on a ventilator if there is no hope. However, since his current situation is not directly related to his heart problem, they would like to give him a chance to recover. They feel that they have enough extended family at home that he could be taken care of at home rather than at a nursing home since he never wanted to go to a nursing home. The decision is made to put  Mr. K. on a ventilator, and proceed with aggressive therapies to try to make him better. He is started on powerful antibiotics, and has a temporary feeding tube placed through his mouth into his stomach to provide nutrition. The medical team also discussed code status. After weighing various pro’s and con’s, the family and the medical team  decide  to make Mr. K’s code status “Do Not Resuscite” (DNR). It is explained that this means that the patient will not undergo C.P.R. if his heart were to stop, per his wishes, but short of that he will continue to receive all other forms of therapy to try to make him better. The family and the medical team also felt  that it was of utmost importance to abide by the wish that he stated in his living will that he not be kept alive by machines if there was “no hope”. Therefore together the family and Mr. K’s medical team decide that if he did not improve enough  over the next several days to be removed from the ventilator  they may decide to re-evaluate his condition.  At that point they could  potentially change his status to CMO (comfort measures only), which means that Mr. K. would be removed from the ventilator. He would be given only medications to keep him comfortable so that he could be allowed to die naturally with as much peace and dignity as possible.

By the third day of treatment his pneumonia has improved, he is removed from the ventilator. His breathing is better but he is significantly confused, the medical team informs his family that this confusion is a common reaction to his condition, and should improve as he recovers. Mr. K has his arms tied down because he continually tries to pull out his feeding tube. After 3 more days, his breathing is much better, his confusion has improved and he is now eating on his own. He is able to have his feeding tube removed, however he is very weak, he requires assistance to walk or get out of bed. He is started on physical therapy and the next day he is discharged home where physical therapy will be continued, after being in the hospital for one week.

This case highlights the difficulties in attempting to apply a single yes/no status to treatment, whether one would call that DNR or AND. Over the course of my career thus far I have witnessed the concept of code status evolve from patients who were strictly DNR, to those who were DNR with exceptions, such as endotracheal intubation (being on a ventilator) or dialysis, and even cases where patients are given a menu of options to choose from. Such is the increasing complexity of modern medicine that it has become all too easy to prolong ones life, yet it has become increasingly difficult to determine whether one’s life can be meaningfully prolonged. While both the DNR and AND terms represent unilateral terms, both mark different points in a spectrum of options that range from ‘do everything possible to keep me alive’ (a.k.a. full code) to ‘just keep me comfortable on the way out’ (a.k.a. comfort measures only). As they say in pharmaceutical commercials,  you really need to “talk to you doctor” to figure out which one would best be suited to your particular situation. Living wills, as seen in the above case are simply a starting point for the discussion about end of life decisions, not the end point that many presume that they are. However that  discussion is difficult to have if a person has not done the soul searching that is required to put together a living will, therefore this is something I would encourage everyone to do.

To me, it would seem then that the AND term should be used in a complementary fashion to DNR and that each term represent but one option in a continuum of care. The continuum of code status could look something like this:

    Full Code —— DNR —|— AND —— CMO

                  <——Emphasis on Cure|Emphasis on Comfort——>

In this scenario, the first two options would be usual care with the intent to heal.  DNR would be the more conservative of these two options and would exclude CPR and (potentially) use of a ventilator. The second 2 options would entail a shift in the goals of care  with the realization that a persons life can not be meaningfully prolonged. Therefore the shift would be from intent to heal to providing comfort, with AND allowing some non-invasive  therapies which do not cause discomfort, and CMO being limited only to therapies which provide comfort. In all cases, the physician must discuss the goals of care, not simply ask which status they would like. It should then be up to the physician to match those goals with an appropriate code status with the patients consent.  A patients status must be continually monitored and their goals and wishes weighed against their progress and their chances for a meaningful recovery. The approach requires an open line of communication between patients’ families and their medical providers who will monitor the patients course. In some cases, the code status could potentially shift  to the left or right as need be.  

Clearly this demonstrates the fallacy that a simple 3 word phrase could potentially define a patients status, nor could it link their goals, beliefs, and level of illness to an appropriate level of care. A true code status requires multi-faceted knowledge of a patients history, their values and belief system, and in depth knowledge of their goals and expectations. A physician also requires a level of clinical mastery, experience, and understanding of their own abilities and limitations to know when such goals can or can not be met. This is what I and thousands of other critical care physicians do every day, and will continue to do, regardless of what three words we are supposed to use.