Communication and Decision-Making About End-of-Life Care in the Intensive Care Unit

Laura Anne Brooks, RN, MN; Elizabeth Manias, RN, BPharm, MPharm, MNStud, PhD, DLF-ACN, MPSA, MSHPA; Patricia Nicholson, RN, PhD


Am J Crit Care. 2017;26(4):336-341. 

In This Article

Shared Decision-making

Themes related to shared decision-making include implementation of EOL care plans, multidisciplinary acceptance of EOL care plans, and collaborative decisions involving patients and families. Although nurses and physicians accepted the value of incorporating different people's views in shared decision-making, in actual practice, this was a difficult goal.

EOL Care Plans

The participants discussed the recent implementation of an EOL care plan in their ICU. The plan included a formal documented plan of care for EOL and a specific medication chart, prewritten with opioids and benzodiazepines. The aims of implementing the plan were to improve consistency of patient care and for an individualized documented regimen of care for each patient to be initiated by the physicians. Nurse participants believed the plan was useful as a resource and checklist; however, efficient implementation of the EOL care plan was disputed. One nurse said, "I think we still need a lot of education for correct application of the end-of-life care plan" (NG2, P1). Nurse participants indicated that implementation of EOL care plans depends on the values and opinions of the medical staff leading patient care. "The end-of-life plans we have are somewhat ad hoc and there's not a lot of structure to them. Over recent times, there's been a lot of effort to put some structure to them, but as to how well that structure is adhered to is very dependent on the consultant, medical lead, and your registrar lead, and the nurses in attendance at the time" (NG3, P1).

Overall, physician participants perceived the EOL care plan to be a useful tool that formalized what was often discussed but not documented. The physicians also observed that the plan provides a structure that clearly identifies responsibilities, serving as a reminder that there were certain aspects of care that needed to be attended to following the commencement of the EOL care plan. One physician indicated that the plan is "very proscriptive about aspects of end-of-life care, and leaves little ambiguity about the pathway intended, and I think [that] makes it easier for all team members to manage the patient during that phase of their care" (PG2, P3).

Multidisciplinary Acceptance of EOL Care Plans

The difficulties of reaching multidisciplinary acceptance of the EOL care plan were frequently discussed within the nursing and physician groups. One physician described the challenges of having multiple health care providers caring for 1 patient, stating that it is hard to achieve multidisciplinary acceptance of an EOL care plan when you have "mixed messages from ICU staff, from other units, between doctors, between nurses, when making a final decision to palliate" (PG1, P3). Similarly, nurse participants acknowledged the difficulties in achieving multidisciplinary acceptance of an EOL care plan: "The more treating teams there are, the more difficult it is for everybody to get on the same page. Particularly, we had a long-term cardiothoracic surgical patient last year and it was a very difficult time for him, his family, and for the ICU team because the surgical team were just very stoic about their position despite multiple cardiac arrests" (NG2, P2).

Nurse and physician participants identified that some external medical teams were more willing to collaborate with the multidisciplinary team and initiate an EOL care plan than others. For example, 1 nurse said, "surgical teams are more inclined to keep pushing for active treatment, whereas the medical physicians in the ICU are a little more realistic" (NG3, P4). Another commented, "it's also dependent on the subjectivity of how those clinicians are feeling at that particular point in time, whether it's a personal reflection on them or the organization or the external medical team's inability to successfully see this person through their illness and get them better, as opposed to successfully manage their illness to an end" (NG3, P1).

"Mixed messages between units and various health professionals can occur when making a final decision."

Collaborative Decisions Involving Patients and Families

Nurse and physician participants discussed the challenges associated with EOL care decision-making. Identified challenges included collaborative decision-making, decisions to apply treatment limitations, and decisions to initiate EOL care. Nurses and physicians emphasized the patient's direct involvement in decision-making about EOL care. This view posed a problem because some patients may not have had discussions with their families about EOL care and were often not able to make decisions about their treatment because of the severity of their illness. The difficulties associated with collaborative decision-making involving the family were discussed. Nurses and physicians explained that they believe it is unfair to present such challenging decisions to the family to make. Participants indicated that the key decision maker should be the physicians involved in managing the patient's treatment when the patient's wishes are unknown. For example, a nurse said, "Clearly the family should not be the big decision maker, you take their input and, really, I think the consultant should be the decision maker" (NG1, P3). Another commented, "If I was building a bridge, I'd want the engineer to be deciding how to do it. If I'm deciding medical treatment, it should be the doctors and nurses looking after the patient who do it, and I don't think it's fair on nonprofessionals to be doing it" (PG2, P4).

Another physician described the role of the family, versus the role of the physician staff, in EOL care decision-making: "It's definitely the medical team which should be making the decision. But when we are making decisions in intensive care, we have to give due respect to the parent units who have taken care of the patient for, sometimes, many years. So it has to be a team meeting within the hospital, but it has to be a medical decision rather than a family decision as far as the care is concerned" (PG1, P4).

Nurse and physician participants described the complexity associated with making the decision to apply treatment limitations or to initiate EOL care. The question of when to apply treatment limitations (ie, the decision to limit what treatments will be provided) or to commence EOL care was a complicated one. For example, a physician said, "It's difficult to know where to draw the line, different specialist treating units will have very different ideas of what's feasible and appropriate, and where the line would be drawn" (PG2, P5). A nurse said, "There are health care clinicians who will recognize death, or the processes that are leading towards death, but it's acknowledging those processes are in place and acknowledging when to draw a line in the sand. That line might be somewhat wavy and move, the goal posts move a little bit sometimes, as to when to change or implement alternative therapies and alternative management strategies" (NG3, P2).

"Direct involvement with patients poses many challenges in decision-making."

One nurse described the difficulties of applying treatment limitations and initiating EOL care, and having timely discussions with family to avoid the situation in which "the family brings it up, where do we draw the line? Is enough, enough? I don't think it should go on for so long that the family wonders that" (NG1, P1).