To live well is a gift and a privilege. To die well is still a work in progress. When I wrote my first book on case management (Powell, 1996), the Nancy Cruzan case was the landmark "right to die" news. Ms. Cruzan was 25 years old in a persistent vegetative state due to a motor vehicle accident in 1983. In 1990, the state of Missouri deemed that "substituted judgments" of surrogates are not clear and convincing evidence of a patient's intent. Her parents and close friends knew that Nancy did not want to be kept alive through artificial means, but without a signed document, her wishes could not be upheld. Do Not Resuscitate (DNR) forms eventually became common practice and the passage of the Patient Self-Determination Act occurred in 1991.
Decades later, DNR determinations have remained problematic and do not always champion their initial intents of providing patient autonomy and preventing nonbeneficial treatments. Cited reasons include (Yuen, Reid, & Fetters, 2011):
* Patients' preferences regarding resuscitation are neglected.
* DNR discussions are delayed until it is too late for the patients to participate in decisions regarding resuscitation.
* Physicians do not provide adequate information to allow patients to make informed decisions.
* Physicians inappropriately extrapolate DNR orders to limit other treatments.
Yuen et al. (2011) suggested that changes to these shortcomings are primarily due to systemic factors and proposed strategies to target them, including changing the hospital culture, reforming hospital policies on DNR discussions, mandating provider communication skills training, and using financial incentives. "These strategies could help overcome existing barriers to proper DNR discussions and align the use of DNR orders closer to their intended purposes of supporting patient self-determination and avoiding non-beneficial interventions at the end of life" (p. 791).
Another poignant case occurred toward the end of 2014, when Brittany Maynard took lethal drugs prescribed by her physician. Maynard was a terminally ill, 29-year-old, diagnosed with a stage 4 malignant brain tumor and spent her final days advocating for death-with-dignity laws. Maynard had much to live for, being newly married, having a bachelor's degree from the University of California at Berkeley and a master's degree from the University of California at Irvine; she spent time teaching at orphanages in Kathmandu, Nepal, working in Costa Rica, traveling to Tanzania, and climbing Mount Kilimanjaro. She was a very different kind of person from the average, publicized patient seeking physician-assisted suicide. However, near the end, Maynard's symptoms worsened; she suffered frequent seizures and stroke-like symptoms. Her choice to take lethal drugs is authorized under the Oregon "Death With Dignity Act." And, please see this issue's Legal and Regulatory Department, titled, "Advocacy: The Key to Dignified End of Life" (Muller), for important up-to-date legal information.
This brief history demonstrates an "all or nothing" approach to end of life. Recently, though, something more middle-of-the-road emerged: Code Comfort (Phipps & Phipps, 2014). In some ways, Code Comfort is like a Code Blue, but the aim is to provide immediate, aggressive relief of suffering. Like Code Blue, it consists of a clearly defined process that requires rapid-response teamwork. Hospital staff responding to a Code Comfort may include palliative care physicians, nurses, respiratory therapists, chaplains, and others who are prepared to rapidly address the patient's physical symptoms, as well as the suffering and concerns of family members. Initially, the nurse is present to actively treat the patient's symptoms; other team members are called in as needed.
From a staff perspective, Code Comfort empowers front-line staff to proactively manage patient symptoms. It reduces the stigma of "DNR" by focusing on what can be done, rather than what staff will not/cannot do (as in a Code Blue). It spares patients and loved ones from having to choose between "all or nothing." And, above all, it relieves suffering.
From a patient's family perspective, even when nature is taking its course, it is a crisis for patients and their families when their loved ones suffer from pain, trouble breathing, or panic. Patients and their loved ones often feel that they are faced with the impossible choice of either accepting unwanted aggressive interventions or suffering without treatment. During this time, the patient and family have a sense of urgency that only those who have experienced this can fully understand. Families may reverse a patient's DNR or "do not intubate" order when the patient was in distress, just to relieve their loved one's suffering.
A palliative care manager at Novant Health, Cynthia Coleman, drew on her prior experience as a hospice nurse and worked with colleagues to develop a novel approach to suffering patients who urgently need relief. Novant Health calls it "Code Comfort." They chose the term because it sends a clear message that when a patient is suffering, it is everyone's top priority. Code Comfort provides a response for patients whose code status is DNR and who desire only comfort measures. It is a compassionate way to manage pain and suffering-including emotional suffering-during an acute crisis without providing unwanted care.
As is true for CPR efforts, teamwork matters to relieve the suffering of dying patients. Code Comfort protocols include an algorithm-driven method for assessing and addressing symptoms such as pain, agitation, and dyspnea. For example, a patient suffering from severe, acute dyspnea would be given morphine and increased oxygen, her head would be elevated, a fan might be used to provide a comforting breeze, and she'd receive other measures to reduce anxiety. Importantly, Code Comfort ensures that no patient or family suffers alone.
Three Code Comfort resources are cited later for case managers interested in this approach:
1. Novant Health has Code Comfort resources. Their website states that "Code Comfort is for patients with a DNR order who desire comfort measures. Use of the order set will promote comfort for patients at risk for symptom crisis nearing end of life" and can be accessed at http://www.novanthealth.org/home/patients-visitors/legal-ethical-decisions/choic
2. The "Code Comfort Order Set" is in a PDF format and can be accessed at: http://www.novanthealth.org/Portals/92/novant_health/documents/patients_visitors
3. The "Code Comfort Policy" is the "working DRAFT" in a PDF format and can be accessed at: http://www.novanthealth.org/Portals/92/novant_health/documents/patients_visitors
End-of-life is an emotionally charged issue: one we will all face. Each step in the road of self-determination brings a public range of emotions from acceptance to moral outrage. This journal takes no sides. However, this is one more tool in your toolbox that can potentially ease suffering.
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