Back in the days when dinosaurs roamed the earth and I was a medical student, the attempted resuscitation of a patient in cardiac arrest was rarely terminated until the monitor displayed a line of asystole that was flatter than a pancake. The mega-code within Advanced Cardiac Life Support (ACLS) courses had as many twists and turns as mountainside freeway, and the emphasis was on endless drug administration and cardiopulmonary resuscitation (CPR) regardless of the patient’s condition or previous quality of life. We bagged pulseless patients until our hands cramped with fatigue. Our triceps were buff like Jack LaLanne from the delivery of vigorous chest compressions for a solitary blip on a monitor strip following the administration of boatloads of epinephrine. Guidelines for termination of resuscitative efforts weren’t formally addressed in the ACLS textbook or highlighted by the medical community.
The Karen Ann Quinlan case was a focal point in the history of medicine as the discussion of quality of life, advanced directives — verbal or written — and her family’s legal struggles made headline news. Our medical community had to examine its stance and actions on issues of brain death confirmed by electroencephalogram (EEG) as well as the grayer scale of quality of life and persistent vegetative states. In previous decades, the zealous resuscitation efforts without regard to the patient’s baseline condition, medical prognosis, or wishes expressed to family or legal counsel often resulted in the creation of a population of patients whose only bodily function was a heartbeat.
Obviously, in EMS and emergency medicine, we aren’t faced with the decisions of whether parenteral nutrition or chronic ventilatory support should be continued. In our current society, we have inpatient and outpatient hospice resources for those with chronic illnesses. The American Heart Association has positively considered the ethical dilemmas created by a cardiopulmonary arrest and has incorporated guidelines for the termination of resuscitation within its ACLS course materials.
As we continue to include more bioethics into our healthcare delivery, challenges and benefits have come to light for EMS and emergency care providers, including patients who desire their wishes honored. A variety of forms of do not resuscitate (DNR) orders or advanced directives are available to the public, and these forms can be initiated by the patient, an attorney, a physician, a healthcare facility or a court of law. Now that we have avenues in place where we aren’t automatically mandated to start CPR on the emaciated cancer patient who has opted for a peaceful natural death, our emergency response system faces the prehospital and hospital management of patients without underlying terminal illnesses who desire or should receive palliative care. This presents a unique challenge, not only to the EMS provider but also to the public that has grown accustomed to a full-fledged prehospital response when they call 9-1-1.
Several states have created programs where patients can enroll in advanced directive programs — other than hospice — where they can request the receipt of comfort care measures only in the event that they should sustain a cardiac and/or a respiratory arrest. The program in Ohio, the State of Ohio DNR-Comfort Care program, is unique to other forms of advanced directives as only the patient can void the document, it’s also the only transportable form of advanced directives, and it provides legal immunity to prehospital care providers. In the event of a cardiac or respiratory arrest, enrollees receive only designated comfort measures and non-invasive airway management. Although the program is currently under revision, it has been well-received by the general public and healthcare facilities.
Managing end-of-life scenarios
The difficult operational aspect of this program and those similar to it is, how do we train our EMS providers to manage the social aspects of end-of-life scenarios they’ll face in the field? Medical professionals witness the passage of life into death many times in their career, yet none of us truly “get used to it.” Now, put yourself in the shoes of a patient’s family member who has never seen a person die before their eyes. A family member may support a loved one’s wishes and participate in their care as health declines. Yet, 9-1-1 is often dispatched when death becomes imminent, and the family is emotionally unable to witness the transition of life into death and overwhelmed by a desire to extend their loved one’s life. The training for EMS providers to manage families hovering over a dying patient with established advanced directives isn’t adequately included in most EMS curricula or clinical training. Even for the most experienced physician, death notification can be a difficult task, and discussing it in a classroom can’t fully prepare the emergency provider to deliver tragic news without an element of angst.
The pleas from families upon the arrival of an emergency response team for EMS to “do something” for a loved one in need is a frequent occurrence. However, the rapport required for patients who have established advanced directives, or who don’t qualify for transport during a health crisis where palliative care triage protocols have been activated, can’t be learned from a book. The inclusion of social workers, clergy, critical incident managers and bioethicists in the education of EMS providers can further enhance the skills needed to compassionately care for the patient as well as family members wrenched by the harsh reality of witnessing impending death. Personally, I have found it beneficial to verbalize to the family all actions being performed to maximize the patient’s comfort, i.e. administration of oxygen or analgesia, rather than allowing them to focus on what isn’t being done.
Palliative care during crises
The development of protocols for palliative care delivery and altered standards of care will become more challenging as we prepare for pandemic flu or other incidents that generate a healthcare crisis. When resources are overwhelmed, these protocols are necessary because an emergency response plan may fail without them. Within most palliative care plans, designated patients won’t receive immediate treatment or transport to health care facilities in order to achieve the goal of maximizing a community’s survival rate and limiting the spread of infection. I’ve seen drafts of palliative care plan for adults, yet many administrators cringe at the thought of developing an analogous plan for the pediatric population. Everyone is deeply affected by the death of a child. Infants and children receive the most rapid treatment and transport of all the patients to which we respond. In the face of strained resources, how will we be able emotionally handle the effects of deferring the transport of one child despite the knowledge that this action may save 10 children?
The cultural, religious and ethical debates will be ongoing. In our society, where the public expects immediate and perfect care, all these plans need to include two mandatory elements. First, extensive education of the public about alternative triage and care processes should begin as soon as the plan is developed. A system that waits to inform the community of altered standards of care after the first victim is identified may incite widespread resistance, panic and riots. Secondly, legislated EMS immunity from liability is critical. Recently, healthcare providers have been legally charged with malpractice, negligence, abandonment and even murder following major disasters. In my years in practice, I’ve never met an emergency care provider who woke up in the morning before heading to work thinking, “Hey, I think I m going to kill someone today,” During disasters, we spend endless hours trying to do the best we can with scant resources, and then we dig deep in our souls for strength and fortitude to do more.
Regardless of the hurdles, medicine continues to merge the science of our art with the ethics of human caring. No one likes to ponder about the mortality of mankind, especially of our loved ones, yet death is an unavoidable stage of life each of us will eventually experience. For those who have elected or have been selected to enter this stage of life naturally without acute medical intervention, we, as care providers, can exercise avenues to extend dignity, grace and mercy to them. As we celebrate the holiday season with family and treasured friends, remember that the future is beyond our control. Don’t wait to encircle them with a big bear hug tomorrow, because life can change in the blink of an eye.
In the timeless words of James Taylor, “Shower the people you love with love. Show them the way that you feel.”