A pattern emerged which captures two contrasting strategies and thereby exposes inter-physician variability in end-of-life decision-making in cases where uncertainty and doubt prevail:
The proactive strategy
One group of physicians described their strategies for mitigating uncertainty and doubt and dealing with challenging ethical dilemmas as proactive. They emphasized their duty to secure that their treatment did not lead to a life with unbearable suffering. They initiated discussions, took leadership in clarification and deliberation processes, were open to discuss the issue of treatment limitations in all stages after an injury, but were also humble, and aware of potential fallibility. Nevertheless, they believed that through collaboration within the multidisciplinary team, communication with the patient´s family and sufficient time to evaluate the medical situation, they could reach decisions on whether to continue life-sustaining treatment or whether to consider the withholding or withdrawing of some modalities or all life-sustaining treatments.
“The core issue is: What are we rescuing this patient to? Is continued treatment in the patient´s best interest? Every single patient needs an individualized judgement. I feel I am proactive. I often initiate discussions about level of care. Others do not.” 14_I
Our study revealed that “best-interest meetings”/”level of care discussions” /discussions about whether to continue, withhold or withdraw life-sustaining treatment were not conducted on a foreseeable or regular basis. Therefore, initiation of discussions was critical. The proactive physicians described how a trigger for such discussions could be their own or others’, including the family’s, doubt about a patient’s best interest. Other triggers could be lack of improvement despite maximal therapeutic effort, neurologic deterioration or repeated problems such as new infections or breathing problems.
“Whenever there is doubt about a patient´s best interest, I think it is appropriate to open up discussions. I believe a proactive approach is very important. To explicitly address and try to gradually resolve the ethical issues that confront us.” 3_N
“Dr. X initiated discussions. The other physicians that previously had been responsible for her treatment in the neuro-intensive care unit had not made any such initiative.” 3_R
Many of the proactive physicians talked about the need for nuanced decision-making. They advocated the value of preparing for the worst, but working towards the best possible outcome, e.g. rehabilitation may co-exist with limitations of some life-rescuing or life-sustaining treatment modalities. A DNR order is simply a plan for what to do if a cardiac arrest occurs; the goal of treatment is still best possible functional outcome.
“In some devastating cases I believe the right thing to do is to be proactive, set limits, but provide rehabilitation. To limit certain elements of treatment in case of a future deterioration is a very different decision than to withdraw.” 15_I
The proactive physicians tried to anticipate future developments, especially with regard to imminent threats but also long-term consequences, and to prepare. In their view, no plans should be seen as static, but rather open to adjustment as the situation evolved.
“The difficult question is for how long should we continue, if the patient fails to respond? I think we need to have an ongoing discussion the first year after the injury. Re-evaluate regularly.” 12_R
The proactive physicians, regardless of specialty, considered dialogue with the family as a crucial way to build a common situational understanding and as an integrated part of the physicians’ professional role.
“We talk with families about the situation at hand, about what can be expected and the uncertainty of our prognostication. By having repeated talks, we develop a relationship and can gradually build common ground. In my experience to develop this common situational understanding with families is usually possible, although with some families it just isn´t.” 3_N
The proactive physicians described how they tailor communication, pay attention to emotional aspects in the team-family interactions and try to contribute to empowerment. The process involves gradually puzzling the pieces together, making sense of conflicting facts or signs and striving to find a coherent story.
“I tell families; this is a process, we will walk with you step by step.” 1_I
Some physicians described personal techniques when approaching and supporting families.
“I think they need an understanding about what really happened. I use a technique when I talk with the family: I go back. I go back to search for the story. I try to walk them through what happened. Try to puzzle the pieces together one by one.” 4_N
They accentuated the importance of listening skills and good verbal as well as non-verbal – and individualized – communication.
“I try to evaluate what the families are able to absorb and what they are interested in. I try to be selective. What matters most for the family right now? What is the most important thing I would like to address today? I think they need to develop their own concepts, be able to retell the story with their own words. I use a kind of challenge and response technique. If I understand that they are not able to absorb more I focus on working on a relational level.” 7_I
The “wait-and-see” strategy
The decision-making processes among the ones who preferred to wait and see were dominated by prognostic uncertainty and their commitment to avoid any self-fulfilling prophecies, with focus on not to withdraw too early. In circumstances of doubt they emphasized their duty to treat. Especially with young patients, they found even discussions of treatment limitations to be inappropriate.
“Treatment limitations are not an issue we discuss in relation to young patients, unless we approach a situation of possible brain death” 1_I
Professional experiences seemed to influence their strategy. They shared stories of patients who had obtained a quality of life far beyond what anyone, including themselves, had ever expected during the acute phase.
They considered just a small chance of improvement sufficient in order to continue aggressive treatment. Neurologically injured patients need months and sometimes years to reveal their true recovery potential, they argued. Given the level of uncertainty concerning long-term outcome, they perceived a focus on short or intermediate goals to be more appropriate. Why rush? Who am I to make decisions to limit or withdraw treatment in this phase?
“We must admit that our ability to be sure about whether a patient will regain consciousness or not is limited.” 16_I
These physicians believed that it was respectful to wait, let the consequences of the injury gradually unfold, remain vague and simply accept the uncertainty of the situation, rather than to force a premature resolution or prepare for all kinds of different scenarios.
“If we need to consider the issue of death and dying the discussions occur late, if they occur at all.” 5_N
In cases with physiological instability, the postponing of sensitive discussions and absence of plans for potential deteriorating was problematic as staff working night shifts who did not know the patient might have to make decisions based on insufficient knowledge.
“When the patient was transferred from the intensive care to the intermediate rehabilitation ward it was unclear what we were expected to do if we were faced with a new deterioration. The injury was devastating, with no signs of significant clinical improvement. The patient was weaned off the ventilator and was given nutrition via a PEG, but he was not reliably stable with regard to his airway and breathing. There was a risk he would need a new intubation, but was a re-escalation of life-sustaining treatment really in this patient´s interest? No explicit plan existed.” 2_R
In some cases the wait-and-see physicians experienced moral ambiguity, but without sharing their thoughts with colleagues or the patient’s family. They did not allow themselves to act on, or even communicate their doubt.
“Even though I worried about the patient´s outcome, I could not allow myself to think about treatment-limitations” 8_I
Moreover, the physicians felt that they could only take responsibility for a limited part of the complex treatment chain. They emphasized their lack of knowledge about what happened to their own patients after discharge and were uncomfortable with giving advice to colleagues responsible for the next chain of treatment.
“I am responsible for the patient in the neuro intensive care phase. How patients are dealt with in the rehabilitation phase is beyond my expertise. I work toward stabilizing the patient, work towards giving him or her access to specialized rehabilitation. What happens after discharge from the neuro intensive care unit is not my responsibility.” 14_I
Like the proactive, the wait-and-see physicians were committed to support the patients’ families, however by different means. Both groups described a long path where common ground was built through multiple conversations over time. They believed there were not a need for the same directness now as early after admittance, where death nearly always was mentioned to the families as a possible outcome. When the situation somehow stabilized, they preferred to stop talking about death and dying.
Situational understanding evolves over time. The wait-and-see physicians described how the doubt about the patient’s best interest sometimes paradoxically seemed to increase along the treatment trajectory. Emotional bounds to the family members grew stronger with time.
According to the wait-and-see physicians, the family’s resistance to address “what if” could be the main reason why they were not able to move forward. This sensitivity towards the emotional state of the family partly guided their choices. They chose to delay the process if they felt that the family was not ready, while the proactive believed in their ability to move forward through repeated communication, support and guiding.
“What I find really difficult is the families that hold on to very unrealistic expectations. Some families are just not able to listen or absorb what we are trying to tell them. If e.g. I want to address the issue of what to do if the situation deteriorated even further, but sense I cannot reach the family, I will be afraid to damage the relationship and choose to keep focus on here and now.” 3_N