[Sent – 2 February 2019 to the 170+ surgeons et al of our Surgical Ethics (Education) Consortium]
Greetings from St. Louis and WashU. For my ‘Surgical Ethics Education Resources #12’ communication, I have inserted below two sections – i.e., ‘Definitions’ and ‘Conceptual Considerations’ – from a larger set of guidelines for navigating ethically conflicted cases re the withholding or withdrawing of life-sustaining technologies. This set of guidelines was created by the ethics committee for a North St. Louis community hospital I have been privileged to lead since July 2011. We developed this set of guidelines in 2011-12 in response to a needs assessment we conducted, in which we asked the hospital’s various services/staffs to identify the cases they faced that posed the most difficult and/or the most recurring ethical challenges. After working through numerous drafts over many months (including seeking feedback from the hospital’s surgeons, hospitalists, and intensive care attendings), we sought and received from the hospital’s board and executive leadership the formal approval for the set of guidelines. We use the set of guidelines both for ethics consults and for hospital staff education. Among the definitions and the conceptual considerations, the most unexpected and yet reassuring particulars have been (1) the differentiation between ‘physiological futility’ and ‘value-based futility’ (‘Definitions’ #9-10) and (2) the reminder/explanation that refusing an intervention is a patient’s absolute right, but that requesting/insisting on an intervention is not a patient’s absolute right (‘Conceptual Considerations’ #5).
I have found these definitions and conceptual considerations to be useful in ethics education conferences for residents and for medical students. I will welcome your feedback.
Doug
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DEFINITIONS:
- Life-sustaining treatment: any treatment that keeps the patient alive but does not cure the patient. A treatment is considered life-sustaining when the patient will die imminently due to the underlying illness or injury if life-sustaining treatments are withheld or withdrawn.
- Advance Directive: a living will, a durable power of attorney for health care, and other written or oral sources that express a patient’s health care preferences, goals, and values.
- Decisional capacity: the ability (1) to receive information regarding the risks, benefits, and alternatives of a specific treatment, (2) to understand and process this information, (3) to deliberate, and (4) to make, communicate, and explain choices. Decisional capacity is determined by a physician, whereas competency is a legal determination rendered by a judge. An individual’s decisional capacity can fluctuate and can depend on the complexity of the decision being made.
- Emancipated minor: an individual under the age of 18 who is married, who is the parent or guardian of a minor child, or who has been declared emancipated by a court.
- Surrogate: a person with decisional capacity who makes decisions on behalf of a patient who does not have decisional capacity.
- Substituted judgment: a decision based on what a surrogate has reason to think under the present circumstances would have been the patient’s choice, based on knowledge of the patient’s preferences, goals, and values.
- Best interest: decisions that are made based on a surrogate’s and a physician’s judgment about what is best for the patient under the present circumstances or what a hypothetical ‘reasonable patient’ would want under the present circumstances.
- Futile treatment: medical treatment provided to a patient with a life-threatening illness that will do no more than prolong the dying process. Conflicts about the delivery of care thought to be futile should be resolved by a due process approach.
- Physiological Futility: The utter impossibility that the patient’s condition can be improved by continuing and/or increasing restorative interventions (i.e., ‘only prolonging the dying process’).
- Value-based Futility (or Quality-of-life Futility): The recognition that continuing and/or increasing restorative interventions conflicts with the patient’s preferences, values, and goals of care.
- Non-beneficial treatment: treatment that, in the best professional judgment of the treating physician(s), will not have a reasonable chance of benefiting the patient. Physicians are not ethically obligated to deliver care that is non-beneficial.
- Cardiopulmonary Arrest: A cardiopulmonary arrest (also known as a cardiac arrest or circulatory arrest) is the abrupt cessation of normal circulation of the blood due to failure of the heart to contract effectively during systole. Patients in cardiopulmonary arrest do not have enough circulation to maintain blood flow to the brain. Irreversible brain damage and death will usually occur within a few minutes of the onset of cardiopulmonary arrest.
- Cardiopulmonary Resuscitation: A set of techniques designed to restore circulation and respiration in the event of acute cardiac or cardiopulmonary arrest. Advanced CPR techniques include closed-chest compression, intubation with assisted ventilation, electroconversion of arrhythmias, and use of cardiotonic and vasopressive drugs. CPR is an indicated procedure to reverse the effects of cardiopulmonary arrest. CPR is not indicated when a clinical judgment is made that the procedure is unlikely to do so.
- Do Not Resuscitate: In the event of cardiopulmonary arrest, no cardiopulmonary resuscitative measures or endotracheal intubation and mechanical ventilation are initiated.
- Comfort Measures Only: The patient receives only therapeutic treatments that are specifically intended to optimize the patient’s comfort. In the event of cardiopulmonary arrest, no cardiopulmonary resuscitative measures or endotracheal intubation and mechanical ventilation are initiated.
CONCEPTUAL CONSIDERATIONS:
- The ethical obligations of beneficence, non-maleficence, autonomy, and justice are all compatible with an informed decision to continue or to discontinue any life-sustaining intervention.
- It is the responsibility of the treating physician/s to ensure the patient (or surrogate) has the appropriate information and support required to assist the physician/s in making decisions and recommendations (including but not limited to life-sustaining treatments). It is the responsibility of the patient (or surrogate) to thoughtfully consider and convey to the treating physician/s the preferences, values, and goals that are hoped to be achieved from the patient’s medical care. These preferences, values, and goals may need to be periodically re-evaluated as the patient’s medical condition and prognosis change.
- Foregoing life-sustaining treatments includes both the withdrawing and withholding of any life-sustaining treatment (including, but not limited to, mechanical ventilation, bi-level positive airway pressure, vasopressors, oxygen, dialysis, antibiotics, blood transfusions, artificial hydration and nutrition). Withholding or withdrawing artificial nutrition/hydration from a patient without decision-making capacity by a surrogate requires clear and convincing evidence of the patient’s wishes.
- There is no ethical or legal distinction between withdrawing and withholding of life-sustaining treatments. The same rationale and justification should be applied to withholding and to withdrawing of life-sustaining treatments. Decisions to forego life-sustaining treatments should be based on medical indications in relation to feasible goals of care and should be consistent with the patient’s advance medical directives and/or other documented expressions of the patient’s preferences, values, and goals (or lacking such guidance, consistent with the best interests of the patient).
- Patients with decisional capacity have the right to participate in decisions about the life-sustaining medical treatments they receive, especially by clearly conveying to the medical team their goals of care and their values. They have the right to be informed of their diagnosis and their prognosis, to be involved in their care planning and treatment, and to request or refuse treatment. They have the right to refuse or to discontinue any medical treatment even if doing so will hasten their death. However, as per CMS Standard 482.13(b)(2), pp. 66-67, “this right must not be construed as a mechanism to demand the provision of treatment or services deemed medically unnecessary or inappropriate”.
- If a patient lacks decisional capacity, an appropriate surrogate (usually but not necessarily a close family member) should assist in the decision making (1) ideally/preferably by representing the patient’s known preferences, values, and goals or (2) if such are not know, then by promoting the patient’s best interests.
- Discussions with the patient (or surrogate) should be conducted in private, with ample time for questions. Discussions should follow our ‘Goals of Care Communication’ template and should include:
- Diagnosis, prognosis, and potential outcomes for the patient.
- Outcomes that are acceptable and/or unacceptable to the patient and the likelihood of those outcomes.
- Treatment options available and clinical implications of each option.
- The treating physician/s and healthcare team are under no ethical or legal obligation to offer, implement, or continue medically inappropriate (i.e., futile or non-beneficial) treatments, including life-sustaining treatments and CPR. Note: every intervention is a ‘trial of treatment’. Patients should not be encumbered with treatments that cannot be reasonably expected to achieve meaningful goals of care (such as return to pre-injury/illness status, discharge from the hospital to home, discharge to non-acute care). Should a patient’s life-sustaining management become futile in this sense, the treating or consulting physician -- following an institutionally approved protocol for futile (non-beneficial) care resolution -- may enter appropriate orders restricting or withdrawing life-sustaining treatments. At all times, pain relief and comfort measures should be provided.
- When the decision is made to forego life-sustaining treatments, it is ethical and it may become necessary to provide treatments to control symptoms including narcotics with the sole purpose of alleviating symptoms and suffering, even at the risk of accelerating or contributing to death.
- When the decision is made to forego life-sustaining treatments, the emotional, physical, and spiritual care of the patient should continue. Withholding or withdrawing life-sustaining treatments in no way implies withholding or withdrawing care for the patient. Maintaining the patient’s dignity is paramount.
