Medical Futility: An Ongoing and Evolving Challenge
Published on: January 16, 2024
Case Presentation
A 78-year-old woman has been admitted to the Neurocritical Care Unit. She arrived following a cardiac arrest in the setting of a Hunt and Hess 5 subarachnoid hemorrhage due to a ruptured basilar artery aneurysm. She has remained comatose despite cerebrospinal fluid diversion and ongoing aggressive care. Unfortunately, her course has also been complicated by diffuse bilateral infarcts from delayed cerebral ischemia related to severe vasospasm noted on brain MRI. She is now developing worsening renal function and will likely require hemodialysis soon.
On exam she is comatose, GCS score is 3T, pupils are nonresponsive, oculocephalic reflex is absent, there is no blink to threat, cough reflex is present, and gag reflex is present but weak. There is no noted grimace nor motor response to pain.
The family is requesting that all medical measures be continued, and are requesting tracheostomy, PEG tube, and, if necessary, CPR. The caring team has expressed concerns with continuing restorative care for this patient and are requesting invocation of the hospital’s “medical futility” policy.
Futility
Futility, as related to medical care, remains a vague and often legally and ethically ill-defined concept—something we frequently discuss on rounds or during multidisciplinary team conferences but rarely at a systemic or societal level.
While terms such as “potentially inappropriate care” or “non-beneficial” care have been introduced as a means to soften the language, all commonly refer to a medical prognostication that a patient’s condition will not improve due to permanent illness or injury, and as such, further therapies that will not improve said condition should not be attempted, such as in the case described above. This definition, however, is not consistently used, and the term has also been associated with other meanings, such as a physician’s prognostication that a therapy may produce no physiological effect; a physician’s prognostication that a therapy may produce a physiological effect, but the effect will provide no medical benefit to the patient; and, in a self-serving manner, used to pronounce a proposed therapy as ineffective because they do not wish to prescribe it (1).
Several major aspects of futility of care discussions surround the need to make value-based judgements about what is beneficial or meaningful to individuals for whom we might apply this term, the unconscious biases we bring to the table as clinicians having these conversations, and the inexact science of prognostication. As medical technologies continue to become more advanced, life-sustaining measures improve, and advancements in neuroscience continue, healthcare professionals anticipate an indeterminacy in the resolution of these ethical dilemmas (2).
Our aim here is to promote individual exploration of this meaningful but often difficult topic for families, clinicians, and society.
Futility in the Literature, the Law, and Hospital Policy
Meta-analysis studies in the literature reveal a diverse and often conflicted view of futility of care. Indeed, individual states and hospital systems approach futility of care differently, and some may not address futility of care at all in their hospital policies (2). Many hospitals have opted to create policies with few specifics. For instance, in one of our hospitals there is an approved policy for addressing concerns of “potentially inappropriate medical care,” though it ultimately provides limited guidance as to what might constitute futile care and instead directs the invoking medical team to obtain an ethics consult with potential for further discussions with hospital leadership and legal counsel.
Requests for resuscitation against medical recommendation and clinician directed code-status changes (also referred to as “unilateral DNR”) are the most commonly addressed areas of futile care. It is the societal norm in the United States to perform CPR on all patients admitted to the hospital unless a “Do Not Resuscitate” (DNR) order has been discussed and signed, though each state has different requirements for initiation of DNR for patients without legal surrogates. In Georgia, for example, “unbefriended” patients—that, is those without legal surrogates—require two physicians to agree that the patient is a candidate for non-resuscitation in the setting of cardiac arrest. The two physicians must agree that one of the following applies:
- The patient has a medical condition that can reasonably be expected to result in their death; OR
- The patient is in a comatose state with no reasonable possibility of regaining cognitive functions; OR
- The patient is someone for whom cardiopulmonary resuscitation would be medically futile in that such resuscitation will likely be unsuccessful in restoring cardiac and respiratory function or will only restore cardiac and respiratory function for a brief period of time, so that the patient will likely experience repeated need for cardiopulmonary resuscitation over a short period of time.
In many states, the order of surrogate decision maker stops after adult sibling, while in Maryland a “friend or other relative” who presents an affidavit to the clinical team documenting a maintained close relationship with the patient will suffice, enabling them to make decisions regarding code status. However, this example is very limited in scope as many discussions related to futility of care do not necessarily focus purely on code status or resuscitation.
The concept of medical futility is inherently a deeply personal assessment of meaningful benefit, and yet one that is ensconced in societal and cultural norms. Concerns that performing CPR despite the belief that it is futile in certain patients has been noted as a driver of moral distress among healthcare workers in the US, whereas in the United Kingdom guidance on enacting DNR orders is bound by that which is known to be medically feasible (3).
Regional Differences in Perception of Medical Futility
The term “Persistent Therapy,” used primarily in Poland and some other Eastern European cultures in lieu of “medical futility,” is defined as “the use of medical procedures to maintain life function of the terminally ill in a way that prolongs their dying, introduces excessive suffering, or violates their dignity (4).” While this term may convey the concept of “medical futility,” it can be confusing as “dignity” varies from individual to individual.
Others have advocated a focus on education, healing, and understanding when addressing goals of care. In the Middle East, the terms “Sabr” and “Shukr” – “Patience and Thankfulness” – are emphasized in discussions between healthcare providers and patients and their families. This concept values patients’ and families’ principles, and reinforces education, understanding, and appreciation for the heroic efforts towards preservation of life, while also underscoring the severity of illness (5).
Cultural viewpoints greatly influence regional views on the concept of medical futility. Regional differences exist across the United States. For example, healthcare teams in the southeastern United States must contend with the dark history of the Tuskegee Syphilis Study. This has led to a legacy of inherent distrust of healthcare amongst many patients and families. Medical literacy and socioeconomic factors also influence how a patient’s family may view conversations regarding goals of care. Healthcare systems and physicians have to adapt and recognize regional and historical influences when discussing patient care.
Conversation Goals for Clinicians, Patients, and Families
It is important to be cognizant that different people may interpret the term “medical futility” differently. These differences often emerge as conflicting views between members of the healthcare team, patients, and their families.
Patient autonomy as a pillar of medical ethics may sometimes challenge the personal beliefs and biases of the healthcare team when balancing viewpoints. It is important to recognize that everyone involved may need some level of support (6). Pragmatism and dogmatism often must be put aside.
As clinicians and healers, we must remember that acceptable, or meaningful, clinical benefit is a “moving target” and defined differently for every individual and their family. Healing for a patient or family may mean more time. A compassionate viewpoint and discussion go a long way in the healing process.
When the care of a patient has ultimately reached the point where the team is discussing medical futility, it is important to note that communications have often broken down, and that the patient or family may feel mistrust toward the caring team. It will be essential to attempt to restore this trust to open the two-way communications that are necessary for successful navigation of patient autonomy.
Practically, when meeting with patients and their families to discuss care that is viewed by the medical team as futile, it is often simplest to return to the basic tenets of shared decision making: identifying the patient’s and family’s values and goals for medical care, acknowledging their expertise in understanding these values, and providing our expertise in the realm of medical possibilities. Every patient and family are unique and we as healthcare providers must tailor our discussions to each situation (6). Framing conversations in terms of goals and goal concordant care often obviates the confusion that a focus on providing or stopping an intervention can create (7).
In some clinical scenarios there may also be differences of opinion amongst the healthcare team. Here, as in conversations with family, the focus should remain on respectful dialogue, an understanding of each other’s views, and ultimately providing goal concordant care for the individual we are all treating. When the impasse is too wide to cross, hospital ethics committees may provide a forum for conflicting viewpoints to be equally shared, respected, and discussed while recognizing that ultimately the guiding principles of ethics, hospital policy, and legal precedent will determine the final decision for how care is provided.
In the case above, more detailed conversations led us to learn that the patient had previously expressed that her goal was to spend more time on this plane of existence, no matter the cost, but family also expressed significant concern with mistrust, stating that “different providers said different things.” Conversations were ultimately not able to be reach a consensus, and the caring team requested a unilateral DNR. The patient underwent tracheostomy and PEG tube placement and was discharged to a subacute rehabilitation facility.
Summary
Our chosen specialty of neurocritical care finds itself at a crossroads where emerging technologies and the evolution of our understanding of consciousness offer unbounded possibilities for the care we provide to those faced with severe acute brain injury. The concept of medical futility remains dynamic and evolving, leading to frequent experiences where what can be done “to” a person and what might be done “for” that person must be sorted out. During that process, we ought to remain realistic, humane, and supportive of our patients, their families, and ourselves
References
1) Bernat JL. Medical Futility. Definition, Determination, and Disputes in Critical Care. Neurocritical Care. 2:198-205. 2005
2) Mueller R, & Kaiser S: Perceptions of medical futility in clinical practice – A qualitative systemic review. Journal of Critical Care. (48) 78-84. 2018.
3) Bishop JP, Brothers KB, Perry JE, Ahmad A: Reviving the conversation around CPR/DNR. The American Journal of Bioethics. 10(1): 61-67. 2010
4) Ferdynus M: Why the term ‘persistent therapy’ is not worse than the term ‘medical futility’. J Med Ethics (48) 350-352. 2022
5) Riaz S: Sabr & Shukr: doing justice to medical futility. J Med Ethics (0) 1-2. 2023
6) Ulrich. C: End of life futility Conversations: when language matters. Perspectives in Biology and Medicine (60)433-437. 2017
7) Kopar PK, Visani A, Squirrell K, Brown DE. Addressing futility: A practical approach. Critical Care Explorations 4(7). 2022
Author Affiliations
- Division Neuroscience Critical Care and Stroke, Emory University School of Medicine
- Neurocritical Care Division, Northwell Health
- Division of Neurosciences, ChristianaCare
- Division of Neurocritical Care, Department of Neurology, Ayer Neuroscience Institute, Hartford Hospital