Fred Mirarchi, DO: There are actually 4 publications that give us a good feel of what is happening. The first is Does a Living Will Equal a DNR? Are Living Wills Compromising Patient Safety? published in The Journal of Emergency Medicine. This was a case study of 3 cases from different parts of the country. It portrayed what happens when patients present to an ER with an acute illness and a living will. In each case the living will was misinterpreted as a DNR, altering care.
The second publication is the TRIAD I study published in the Journal of Patient Safety. What we found was that when presented with a living will that declined life saving measures for a terminal illness or a persistent vegetative state, healthcare providers interpreted the document as a DNR. We also found that the perception of the term DNR is believed to define comfort care/end of life care. This raises the concern that if you have a living will and it gets misinterpreted as a DNR and DNR defines comfort care/end of life care, then how aggressive do you believe healthcare personnel will be with you when you present critically ill and cannot speak for yourself.
The third publication is the TRIAD II study which was published in the JEM and was a pre-hospital study only. It was to determine if the living will as structured today would be misinterpreted (by paramedics) and would this misinterpretation result in the lack of provision of life saving care. The study was also designed to see if we could fix the problem of misinterpretation by adding a clearly defined code status in the living will. What we found was that in all cases the living will was misinterpreted and the patients did not receive or had a significant delay in receiving life saving care. We did find that we could quickly and easily correct the problem by inserting a clearly defined code status in the living will. This resulted in significant increases in the provision of life saving care.
The fourth publication was Understanding Living Wills and DNR Orders. This was a special report released in Jan 2009 by the PA Patient Safety Reporting Authority. This organization took my concerns of patient safety and queried their database of PA hospitals. They found over 220 reported instances where patient care may have been affected due to the concern of living wills being misinterpreted and a general misunderstanding of the term DNR.
Dr. Plaster: Further, you concluded from your studies that EPs might actually be interpreting a living will or DNR differently from how the patient intended it to be carried out. What is your understanding of the proper difference between a living will and a DNR? And can you give a scenario where one might misinterpret the language of a living will or DNR?
Dr. Mirarchi: Let us first clarify how a living will is commonly created. They are often created by attorneys as part of a typical estate plan. Attorneys commonly tell their clients that this document will only become enacted if you are deemed to be terminal or in a persistent vegetative state. They tell their client point blank that this will not affect the care you receive if you are critically ill and it will not prevent the provision of life saving care. One of the problems here is the term terminally ill. In medicine a UTI or CHF can be terminal. However in the eyes of the law, terminally ill has a specific definition which commonly states that a terminal condition is one in which a patient would be expected to die within 6 months despite the provision of sound medical treatment.
On the other hand, the term DNR has been defined in such a way as to apply only to a patient who is found pulseless and apneic. If found in this state the provision of CPR would be withheld.
As such my understanding is that a living will is different than a DNR. It is my opinion that just because a living will declines life saving measures it is not an automatic DNR order. Further, I believe that living wills should almost never impact the initial provision of life saving care for a critical illness. A living will does not state “do not treat me if I am critically ill”. It says “Do not treat me if I am in a terminal condition of persistent vegetative state”. A common example of this is a CHF patient who presents in extremis with a living will. While the living will is “effective”, which means that it is valid and legal, it cannot be “enacted” until it’s terms are met, which is a terminal condition or persistent vegetative state. Therefore, you have a critically ill CHF patient who deserves and requires treatment for their critically ill state.
Dr. Mirarchi: Yes, to varying degrees.
Dr. Plaster: It appears from TRIAD I & II that many EPs interpret DNR orders to prohibit placing the patient on a ventilator to continue their life. And it appears that you are saying that that is a misinterpretation of what the patient is desiring. Withholding a ventilator to resuscitate them after they are apneic is different from withholding a ventilator to keep them from becoming apneic. Is that correct?
Dr. Plaster: So when you say that misunderstanding living wills and DNR orders are a ‘patient safety’ issue, you mean that patients want us to attempt to save their lives, even if they have a living will or DNR, they just don’t want us to bring them back if they become pulseless and apneic?
Dr. Mirarchi: First, a code status designation to impact the initial phase of the delivery or withholding of life saving care should be included in every living will. Second, patients need to know that interpretation of living wills is problematic and they might want to reconsider bringing these documents with them to the hospital for routine medical conditions or admissions. Rather the document should be in a safe place and a copy should be with their appointed health care surrogate. Then at a time of need the document should be made available. And most important, physicians should see the presence of a living will as a flag to stop and have a discussion with the patient or surrogate regarding treatment wishes and expectations of pertinent outcomes.
If you have witnessed patient care being effected by living wills and DNR orders, you can email your experience to Dr. Mirarchi at Fred.mirarchi@hamot.org
The paramedics bring in a patient who has a long standing history of COPD. The patient is in extremis, pulse oximetry in the 80’s and falling. The patient is so out of breath and hypoxic that he cannot speak, except in one word bursts. You are not sure that he is understanding you. He keeps trying to take off the oxygen mask. The paramedic says that his wife gave them his living will but she was too feeble to come herself. The wife made no comment about his wishes or how the living will was to be interpreted. The language of the living will is the typical “I do not wish to be resuscitated using CPR”. Would you . . .
4 Comments
Dr. Mirarchi:
I applaud your efforts to better understand the implications of Living Wills — both positive and unintended negative. In the past how much federal or private funding has been awarded to study these issues? In your opinion, should the Department of Health and Human Services fund such research in the future? If so, which branch ought to develop Research Funding Alerts (RFA’s) for these issues: AHRQ? NIH? Other?
I would not want to throw the baby out with the bath water where Living Wills aid end-of-life decision making. In 2007, the US spends 16.2% of th GDP ($2.2 trillion dollars) on health care ($7412 per person) compared with 7.2% GDP and $356 per person in 1970. As we all know, much of this spending occurs at the end-of-life when patient-important outcomes (Quality of Life, recovery of functional independence) are not improved. Accordingly, future Living Will research will need to assess cost-effectiveness of Living Wills (or no Living Wills) in addition to the social and emotional ramifications these documents deliver.
This is a challenging issue on many levels. Keep up the good work.
Chris Carpenter, MD, MSc.
EP Monthly Chief Clinical Editor
Any patient has the right to change their mind at the last moment and seek to live. It need only to be verbally stated. The Living will is only advisory as to wishes which commonly center on items such as not wanting to be a burden. The ER doctor is not the patient’s primary physician and we can assume that he knows nothing of the past history or any conversations which might have occured with him or her. I would resuscitate this patient and later learn his intentions. The duty to decide to withhold life saving measures that leads to death is truly in the realm of the private phyician. I do not see how we can make these decisions with the lives of perfect strangers.
I personally would opt for E, and make an attempt to contact family to discern intentions of the living will. Otherwise, I would resuscitate the patient while in the ED, and subsequently allow a more informed decision to occur with the family and private physician present. Emergent end of life decisions made by EP’s who rarely know the patient are fraught with many emotional, social, and economic issues as Dr Carpenter mentioned. The more people involved the better!
Interestingly living wills are being looked at to control healthcare spending and be included in healthcare reform.
see the abcnews story below
http://abcnews.go.com/Health/HealthCare/story?id=7817908&page=1