Many healthcare providers are uncomfortable with a patient’s death. When it becomes clear that we are not able to heal a patient, we ask the palliative care team to take over the care. However, a palliative care consult isn’t always the answer. A lot of palliative care can and should be managed by the ICU team directly.
Patients often form deep bonds of trust with the dedicated ICU team during their stays, which can extend from days to weeks or even months. Recognizing the significance of this relationship, it's vital that we approach the transition of care with the utmost sensitivity. Rather than introducing an entirely new team solely due to discomfort with end-of-life situations, we can ensure a seamless and supportive continuity of care. This positive approach allows patients and families to maintain the trusted connections they've developed with the ICU team, even during their most vulnerable moments.
We should work with and support the palliative care team. There is a level of palliative care – what my colleague Dr. Jessica McFarlin calls palliative care 101 – that every ICU provider should feel comfortable with and manage on their own.
Probably the most important part of providing palliative care in the ICU is knowing how to talk to patients and their families and helping them with complex decisions. Six key parts comprise a successful family meeting, where we discuss goals of care with a patient and/or their family. They are the pre-meeting, introductions, asking about a patient’s or family’s understanding of the situation, responding to emotions, highlighting the patient’s voice and debriefing.
Pre-meetings are critical to the success of family discussions. Gather the team, even if not everyone can be present, and discuss the prognosis and what will be said. This procedure ensures that everyone is on the same page and that the family doesn’t receive conflicting information. Include the ICU provider, the patient’s nurse and any specialists. I involve the hospital chaplain, as they provide spiritual support. Prepare an appropriate space for the meeting, which should be in the patient’s room if the patient is able and willing to participate. If not, a quiet conference room is the next best place. You want to ensure seating for everyone who plans to participate and privacy for the discussion. Everyone should sit when having these discussions. We are on our feet all day, so standing seems natural to us, but it may give the impression to the family that you are rushed and have somewhere else to be.
Family Meeting Dynamics
Open the meeting with introductions. Even if you’ve been caring for the patient for a long time and have a relationship with the family, not everyone in the room may know your role. Lots of people come in and out of our patients’ rooms, and it can be difficult to keep track of who is who. Additionally, there may be new family members present who you do not know. Ask specifically how they are related to the patient; never assume. After introductions have been made, take a moment to gauge their understanding of the situation. You could begin by saying, “Please tell me your understanding of your husband’s condition.” This approach not only helps you uncover their knowledge, thereby minimizing the need for unnecessary repetition, but it also provides an opportunity to address any misconceptions. Listening to their narration of the situation will help you identify any learning needs.
Discussions about critical illness and the end of life will bring up some emotions, and it is essential that we respond to their emotions in the best way possible. We can do that by using NURSE statements (McFarlin, 2017). Name the emotion, Understand it, Respect what they’re going through, Support them and Explore the emotion further. Statements such as, “This news seems to have made you sad,” “I can’t imagine how hard it is to see your dad this ill,” “You are doing a wonderful job making sure your mom is so well cared for,” “We will be here for you and your family no matter what,” and “Tell me more about what is worrying you” are examples of NURSE statements that you can use to respond to family members’ emotions.
It is essential to highlight the patient’s voice, especially if they are unable to participate. I often say, “Although I’ve spent a lot of time with your dad, I don’t know him like you do. What would he want in this situation?” Or, “If your wife could speak to us right now, what would she tell us she wants?” It helps if families had these discussions ahead of time, but that is often not the case. We want to make sure the decisions are not what we want, or even what the family wants, but what the patient wants.
Conclusion of the Family Meeting
I end every meeting by restating what has been decided, to ensure there is no miscommunication. “OK, so what we’re going to do is to change your husband’s code status to DNR, so if his heart were to stop, we would not do chest compressions or shock him. We’re going to stop all treatments that aren’t aimed at keeping him comfortable and then remove the breathing tube, taking him off the ventilator and allowing him to die naturally.” These statements help ensure that no one is surprised because of a misunderstanding. If families are having a difficult time making a decision, I will offer my recommendations. Too often we feel that we can’t make recommendations because it takes away their autonomy. But we wouldn’t just ask a patient, “What do you want to do about your high blood pressure?” We would make recommendations. This situation is no different. I always tell families, “I’ll do whatever you feel is best, and I’d like to offer you some recommendations.”
Decisions regarding goals of care are not black and white, and they don’t have to be all or nothing. It is OK for families to limit care in the form of DNR orders, no escalation of care (where we continue as-is without additional therapies), and the use of time-limited trials where we set a specific point to make a decision based on how the patient responds (“We’ll revisit this discussion in the morning”). Families may opt to withdraw life-sustaining therapies and proceed with comfort measures only. It is important not to use the phrase “withdraw care,” as we are going to continue to care for the patient, just in a new way.
Debrief Session With the Team
After any family meeting, take some time with the ICU team to debrief. Go over the plan once more after leaving the room to ensure that all members of the ICU team are on the same page. Discuss how you think the family meeting went and what could have been better. The debrief will help you become more comfortable with these meetings and improve them for the future, both with that particular family and with others.
Once the decision has been made to withdraw life-sustaining therapy or move to comfort measures only, the ICU team should continue to be involved and manage the patient’s symptoms. I start the process by stopping any tests or treatments that aren’t designed to manage symptoms and ensure comfort, including lab tests and routine tasks such as finger sticks for blood sugar.
Hence, it is advisable to have PRN (as needed) orders in place for these medications. This will help mitigate elevated respiratory rates, reduce the effort required for breathing, and address discomfort. Additionally, glycopyrrolate is commonly prescribed to decrease excessive oral secretions, which could otherwise contribute to dyspnea.
One measure that may cause initial discomfort for families is the cessation of IV fluids and tube feeding. Families may feel that patients will become dehydrated or “starve to death.” However, continuing IV fluids can compromise failing respiratory status even further, and continuing tube feeding may cause abdominal pain as gastric motility slows. Family education has a significant role in helping them understand the rationale of the interventions.
Calling Palliative Care
When should you consult palliative care? For some cases, palliative care needs may be greater than what you feel comfortable with managing. Here are some of the events that may serve as indications for a formal palliative care consult:
- Conflict (among family members or among the healthcare team)
- Legal or ethical issues
- Symptoms that are difficult to manage
- Uncertain prognosis
- Complicated grief in either the patient or family.
Also, it may be helpful for the palliative care team to be involved so they can provide continuity of care if the patient’s death is expected to be prolonged. It is not typically feasible for a patient to remain in the ICU for days or weeks following withdrawal of life-sustaining therapy, and the palliative care team can provide continuity between the ICU and the ward. Delivering palliative care to our ICU patients offers a rewarding experience. It grants us the privilege to provide focused patient-centered care. It ensures a seamless continuum of care from a trusted interdisciplinary team. While the palliative care team plays a significant role, every ICU provider should be able to offer palliative care, even if it's at a fundamental level.
- Critical Care Scenarios Podcast: Palliative Care in the ICU Part 1 and Critical Care Scenarios Podcast: Palliative Care in the ICU Part 2
- Critical Care Scenarios Podcast: How do we do end-of-life care?
- End-of-Life Nursing Education Consortium (ELNEC): Advancing Palliative Care
Are you ready to be part of the palliative care team for your patients?