BWH Clinical Ethics Case Review, a monthly newsletter, is published by the BWH Office of Clinical Ethics. Each issue highlights a BWH case that posed an ethical problem for a patient, family members and/or caregivers, leading to an ethics consultation and BWH Ethics Committee discussion. Some of the details in this case review have been altered in order to protect patient privacy and confidentiality.
“We Want to Do Everything” Understanding the Meaning Behind This Request
This issue of the BWH Clinical Ethics Case Review highlights a case in which the parents of a terminally ill infant asked the care team to continue “doing everything” to keep their child alive.
After prenatal testing, a couple learned their fetus had a fatal disorder of bone growth. Infants with this disease usually are stillborn or die shortly after birth from respiratory failure, although a very small number have lived for a time with intensive support. The care team informed the parents of these facts and prepared them for the birth; the plan was to let the parents hold their baby until he died. The mother ended up having an emergency C-section and, because of the anesthesia, was unable to participate in this bonding experience.
The team made the decision to intubate the baby to give the family some precious time together.
Soon after the birth, the parents learned of three reported cases in which babies with this disorder had survived past the peripartum period. This gave them hope, and they decided they wanted everything done, including full code, which would entail maintaining intubation and mechanical ventilation, and potentially include chest compressions, electrical countershock and medication.
In accordance with the parents’ wishes, the goals of care were redirected to life-prolonging interventions, including intensive respiratory support and a feeding tube. However, after several days the baby began to deteriorate and show signs of suffering. The parents were asked to consider removing life support but had difficulty acknowledging the baby’s distress and wanted to carry on with all care. In keeping with their religious faith, they said they were prepared to accept and care for him, no matter the outcome.
An ethics consult was called to discuss the case with the team.
When a patient (or surrogate) asks for everything in response to an inquiry about setting medical limits, a clinician might reasonably conclude that the patient wants to prolong life at all costs, no matter how harsh, invasive or unbeneficial the treatment (Quill et al. 2009).* On its face, such a request puts the clinician in the difficult position of having to prioritize between two competing ethical obligations – respecting the patient’s right to autonomy in medical decision making on the one hand and upholding the clinician’s duty to “do no harm” on the other.
Instead of taking this request at face value, clinicians should use it as the basis for a broader discussion about what “doing everything” means to the patient.
Patients rarely want to do everything for its own sake; rather, the request is more likely a reflection of underlying emotional, spiritual, family or cognitive concerns.* By striving to understand these concerns, clinicians will be better equipped to make treatment recommendations that honor the patient’s own values and goals while avoiding treatments in which the burdens outweigh the potential for benefit.
Often, asking for everything is motivated by a desire for a specific outcome, such as living until the birth of a grandchild. The patient may be willing to endure considerable pain and suffering to achieve that goal, but wish to redirect the treatment plan afterwards. Inquiring “What are your most important goals?” may reveal the impetus for the request.
In other instances, fear and anxiety lurk beneath the surface. Some patients who ask for everything are really expressing a fear of getting sicker or of being abandoned by their physician if they opt for comfort only. Patients who have experienced discrimination in the health care system may be apprehensive about receiving insufficient care if they agree to any limit setting. Asking “What are your biggest worries?” might help to elicit some of these concerns.
Patients with strong religious convictions may believe that their faith requires them to try everything to stay alive, or that they need to give God time for a miracle. For them, extension of biological life may be more important than the effects of treatment on quality of life.* Asking “Does your religion provide guidance in this situation?” may provide insight into the role of spirituality in their decision-making process.
In other cases, critical family dynamics must be addressed before any major decisions about shifting goals of care can be made.* Perhaps the spouse is insisting that the patient can “beat this thing” or the children aren’t yet aware of the gravity of the situation. Asking open-ended questions, such as “How is your family handling your illness?” may help to identify areas of familial tension.
Some patients may have limited understanding of their prognosis or the ability of medical therapy to influence their illness.* To ascertain what the patient knows, suggested questions are: “What is your understanding of where you are with your illness?” and “What does the future look like?” The clinician should then offer information about treatment efficacy and burdens to ensure subsequent decisions are as informed as possible. It is important to follow up with a question about the patient’s values and priorities, such as “Given what you have now learned about your disease, what is most important to you?”
Once the meaning of “everything” has been explored, the clinician can propose a philosophy of treatment that is consistent with the patient’s values and priorities and the clinician’s assessment of the patient’s medical condition and prognosis.* A suggested way to express this is: “Given what we know about your illness and what I have learned about your priorities, it sounds like you would prefer the following balance of burdens and benefits in your treatment . . .” Within this framework of deeper understanding, clinicians can make more informed treatment recommendations, and patients can make better decisions about what should (and should not) be done to help support their goals.*
In this case, the ethics consultation helped the care team come together to review the information they had and hear one another’s points of view, as well as to coordinate their approach to the parents. After the consultation, the entire team met with the parents and shared their concern that the baby’s decline meant he would not survive much longer and was suffering from the burden of interventions. They listened to the parents’ distress about their child and assured them that they had done everything possible to keep him alive. The team explained that the breathing and feeding tubes were no longer options, and that they would make sure the baby was comfortable. The parents said they understood and the most important thing now was to be with him until he died.
*Citations to this article, (Quill et al. 2009), are marked by an asterisk (*). All conversation prompts are also from this article.
Quill, T et al. “Discussing Treatment Preferences with Patients Who Want ‘Everything’.” Ann Intern Med. 2009:151;345-349.
For guidelines on talking to patients about serious illness, read “Serious Illness Conversation Guide.” 2015 Ariadne Labs and Dana-Farber Cancer Institute, revised April 2017, http://www.ariadnelabs.org.
Zitter, J. “When ‘Doing Everything’ Is Way too Much.” The New York Times, 7 Feb. 2015, https://opinionator.blogs.nytimes.com/2015/02/07/when-doing-everything-is-way-too-much/?_r=0.
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