By D.W. Donovan
Ministering to the family of a neurologically devastated patient can be complex. A person can be declared dead by either cardio-pulmonary criteria or by neurological criteria. But while the latter has wide acceptance within the medical community, it is not as intuitively self-evident to the average lay person. Collectively, we have been trained by repeated exposure to television shows and movies that death occurs when the heart stops. The term “brain death” can suggest that they are not quite dead — and this provides an unfair sense of hope to the family.
Death by neurological criteria occurs when a person has suffered a neurological injury beyond the capacity to sustain life. Physicians can measure this with an extraordinarily high level of certainty through a variety of diagnostic tools.
This is important for two reasons. It allows for the possibility of organ donation, and it allows medical staff to cease curative-focused treatments for a patient who only appears to be alive because the heart will keep beating as long as the ventilator forces air into the system.
Nearly 25 years ago, as a part of my CPE residency, my colleagues and I participated in a multi-site study that helped identify best practices for ministry to the families of neurologically devastated patients. I found the results invaluable as a chaplain and mission leader in the years to come, and several articles outlining the results of the study were written by our department director, Dr. Lex Tartaglia, and his associates. I commend those articles to you.
Later in life, I studied this issue in depth as a part of my doctorate in medical ethics with the Jesuits. While news stories can confuse the issue, the Catholic Church has been consistent in both its support of organ donation and its assertion that death should be defined by and determined by medical professionals. For an excellent summary of Church teaching, click this link.
Having a clear understanding of neurological death, and being able to describe it to the patient’s loved ones, is the first critical step in providing the best possible care in the worst of situations.
And these truly are traumatic situations. Although injuries to the brain can come in many forms, a typical case might involve a blunt-force impact to the head. Mr. X arrives at St. Somewhere after a fall from his fourth-story apartment. He has significant injuries to his entire body, and early indications are that his brain was damaged as well. His family is in shock, hoping and praying for the best, and still trying to comprehend what might have happened.
Except in the most extreme situations, there is no need to discuss death by neurological criteria at this point. In most cases, the family is not able to think through the complexity of that concept, and it is important that they do not believe we have given up on this new patient. The message at this point is simple: “Mr. X has sustained severe, life-threatening injuries. We will do everything possible to support him and we will watch him carefully through the night. We’ll meet again sometime tomorrow and let’s see where we are.”
Unfortunately, Mr. X does not improve overnight. His Glasgow Coma Scale, which summarizes the results of a series of bedside examinations, remains very low (3 on a scale of 3 to 15). We arrange a family conference for that afternoon. From the study mentioned above, we have developed a process that is helpful and pastorally sensitive. Mr. X’s neurosurgeon, his nurse, and the trained chaplain are all present for this meeting.
We begin with a short summary of his clinical condition. The neurosurgeon takes his time, allowing time for questions. The family mentions how strong Mr. X is, and they believe he will pull through. Oftentimes, the potential for a miracle is brought up. This is not the time to try and convince the family of anything. While it would be disingenuous to openly agree with such statements, there are ways of expressing support: “I hope you are right. And nothing would make me happier than to have him walk out of this hospital. We will do everything that we can to support that process.”
It’s a good place to transition into what I call the three possibilities. While the neurosurgeon may be the first to explain this, the chaplain should be well-versed in this language and concept, because the family will most often turn to the chaplain as they process their oftentimes overwhelming grief.
“There are three possibilities. The first is that he gets better. It could be a little bit better or it could be a lot better, as I know that you are all hoping for. The second possibility is that he stays the same. The third possibility is that he gets worse. He could get a little bit worse, or it could be so bad and his brain is so badly injured that he dies from these injuries. That is called death by neurological criteria, and we will get you more information on that later if we need to. With this kind of injury, we usually have a pretty clear picture of how things will go in the first 72 hours. We will keep supporting him. We will keep monitoring him closely and doing everything that we can.”
Note that we have not brought up organ donation and that our message is still one of ongoing support. The local organ procurement organization is likely involved at this point, but they also understand that it is premature to speak to the family now. You may feel some ethical angst keeping that information from the family, but it helps to stay focused on caring for them: you want the OPO to be ready to speak to them with the right information at the right time.
Unfortunately, Mr. X’s condition continues to deteriorate. Bedside exams suggest that he has herniated, meaning that the injury has irrevocably destroyed the ability of the brain stem to function. It is time to test to see if death by neurological criteria has occurred. We meet again with the family and share with them that despite our best efforts, his condition has worsened. We carefully explain the concept of death by neurological criteria and how the brain stem controls the most basic of functions. We explain how we can test for this through a series of arterial blood gas labs. I have often used the example that a person who is drowning will gasp for breath even through they know they are underwater, because that reflex is the most primal. Finally, we note that when testing is complete, we will come back to them and share that either he is not dead or that death by neurological criteria has occurred and been confirmed. If that does occur, we will give them a chance to say goodbye, but we will remove the ventilator at that point. We are very clear: we do not treat dead people.
If Mr. X is found to be dead by neurological criteria, we will invite the family back to say goodbye. If the OPO has determined that the patient is a viable candidate for organ donation, we will introduce them at a moment that seems appropriate. For reasons that are beyond the scope of this article, it is important that they take the lead in making the request for organ donation (or informing the family that organ donation will take place if the patient made that prior decision).
Mr. X’s family had the benefit of a well-trained chaplain, working hand-in-hand in a well-coordinated process with a compassionate neurosurgeon. While his death was a tragedy, clear and compassionate communication helped the family through one of the worst days of their lives. Each situation is different, but the basic principles outlined here have proven to be most helpful as you accompany such a family through an extremely complex pastoral situation.
Dr. D.W. Donovan, BCC, is chief mission integration officer at Providence Holy Cross Medical Center. He earned his doctorate in medical ethics from the Loyola University Chicago and is published in the area of organ donation and ethics.
