Palliative Care in the ICU
I became a physician because I love being able to help people recover from illness. I became a critical care physician because I love taking care of the sickest patients in the hospital, from the time they are brought into the emergency room up until the time they are safe enough to go to a regular medical floor. As an ICU physician, I have the unique privilege of guiding patients through their critical illness, and this is truly something that brings me great satisfaction and joy. Unfortunately, I also have the distinct pain of recognizing when my patient will not get better from their critical illness despite the best effort of everyone in the ICU.
In these cases, you as the ICU physician must be comfortable in leading the very challenging “goals of care” discussion. Navigating your patient through their ICU course sometimes involves making recommendations to family that include stopping aggressive therapies and focusing on patient comfort only. It also can be useful to clarify things like resuscitation orders or decisions regarding intubation or other aggressive treatments. These conversations are inherently very awkward to have, but it is a vital skill that every ICU physician must master. Knowing how to have these conversations is just as important as knowing how to place central lines in crashing patients, or any of the other ICU level therapies we offer. We humbly submit the following tips to help you, your patient, and their families navigate these challenging conversations.
The SPIKES protocol was developed for use in oncology patients; however, it has been adapted by numerous specialities as the gold standard for breaking bad news. In the ICU setting, the SPIKES protocol can be useful, but we are often not fortunate enough to have time to build rapport/trust with our patients and their families. We often must make phone calls when a patient is very unstable. This decompensation is often not expected by the family, so we catch everyone at the worst moment of their lives. The aforementioned tips use the SPIKES framework, but with some modifications that I’ve found useful in the critical care setting.
- Set the scene:
Ideally, you want the patient’s family to meet with you, face-to-face, in a private consultation room. Often when we are having these discussions, the patient is too critically ill to participate in the conversation, so you’ll just be meeting with family, some of whom may not have seen their loved ones in their current state. The room should be private, quiet, and have some supplies (like tissues) readily available if needed. You also need to set yourself up – turn your pager off or hand it off to someone who can take calls for you. Turn your cell off too, or at least put it on silent.
Unfortunately, during this pandemic, the majority of these discussions now happen over telephone or video chat, which can present additional challenges. Many hospitals have very strict visitation policies in order to try and keep people safe. I have had far too many end of life discussions via phone or video chat now; however, I try to keep to the same rules – go to a quiet place and minimize as many distractions as you can. I also will try to have a colleague or another member of the ICU team present on the call as well to help with witnessing verbal consent for code status changes, or to help provide more information to families.
The first step in initiating the conversation is to try and get a working knowledge about what the family or patient knows. I usually will start my conversations with something like
“Thank you all so much for being present for this meeting. I really wish we were meeting under better circumstances. I wanted to start by just asking you all what you know about what’s going on with ____?”
Doing this allows you to gain some insight into how much the family knows and it can help you address any misconceptions they may have right away.
In the SPIKES mnemonic, this is where you ask for permission to relay information to the patient or to the family. I usually will say something like “Thank you for sharing what you know about ____’s condition. Is it OK if I give some more information?”
- Knowledge sharing:
Fairly self explanatory, however this is the most challenging portion of the conversation. You absolutely have to find a way to communicate your concerns about the patient in a very easy to understand way. There is a fine line between being condescending and effectively communicating difficult medical concepts in simple terms, but this is a skill that is vital to developing trust and a rapport with the patient or family. If you start throwing medical terms and jargon around, you risk the family not understanding what is actually happening to their loved one. If you come across as blatantly “dumbing it down,” you risk offending people.
“He’s on norepinephrine, vasopressin, and his MAP is still barely scratching 60. His LFTs and Cr keep rising and the urine output is nothing.
“He’s on a lot of different, powerful medications to keep his blood pressure up, but he’s so sick that even with all this help, his pressure is barely enough to sustain his organs. Sadly, his organs have started to shut down.”
“She’s on 15 PEEP with 100% FiO2. Her P/F ratio is 80 even when proned. When we supinated her, she desatted to the 60’s and went brady to the 30’s.”
“She’s on very high settings on the breathing machine, almost the highest we can go. We’ve tried advanced techniques like proning, which is turning her on her stomach to try to help the lungs out, but despite that she isn’t improving. When we turned her on her back again, she nearly died.”
Another aspect of the SPIKES acronym that is very easy to say but difficult to master. You are meeting these people at the worst moment of their lives, and oftentimes are delivering devastating news. You must find a way to let the patient or their family know that you truly do care and that you and the team are doing everything you possibly can to get the best outcome for the patient.
Every physician/clinician will have their own style and personality when it comes to showing empathy, so this is not something that can be generalized. Personally, I really try to convey with my tone how sorry I am. I generally start my conversations with a phrase like “I’m really sorry that we have to meet under these circumstances.” When having conversations about potential end of life scenarios, like when a patient is on max support and still not doing well, I’ll often say “I’m really worried that _____ is suffering right now. What do you think he’d say if he were able to talk?”
Using these phrases will hopefully help families focus on their loved ones and how they would react to being so critically ill. When leading these conversations, I really try my best to actively listen to family members. I’ll sometimes ask “tell me what _____ is like at home.” I’ve had families tell me about 40 years of marriage, trials, struggles, joy, and sorrow. It is a unique honor that we have as ICU physicians to be able to gain this level of insight into a patient’s life. Actively listening also helps build rapport and shows family that you truly do care about their loved ones.
ProTip: Do not underestimate silence. Silence is golden. There will be a lot of awkward pauses in these conversations, and our natural tendency is to fill this with speech, but sometimes people need time to reflect. Do not fear silence.
This is where you make a mutually agreed upon action plan. This can take many forms. If the conversation is about withdrawal of care, you should explain (in as much detail as the family would like) what the order of events will be and what medications will be given to make sure that their loved one is not suffering or in pain. If the conversation is about conversion of a code status from full code to DNR/DNI, you should let the family and patient know that you will take care of all the paperwork right away. You should also include how you plan to keep the family/patient updated as things develop.
ProTip: Do not underestimate faith, despite your personal beliefs. I always ask families if they would like a chaplain or priest to be present or administer last rites. If a family asks me to pray for their loved ones, I tell them that I will gladly do so. For some patients and their families, this is vitally important, so please make sure to offer this.
*”Do everything you can, Doc”*
If the decisions made still include aggressive ICU level care, then assure the patient and their family that you will do everything in your power to have a good outcome. Sometimes this can entail keeping a full code status on a post arrest 97 year old patient with end stage dementia, maxed out on 3 pressors. When this decision is reached despite you effectively detailing how sick the patient is and how they are very unlikely to recover any semblance of a normal life, it can feel like you let your patient down. It can feel like you failed. Sometimes, every instinct you have as a physician is to say “This is not realistic! It is not reasonable! Your loved one is suffering and will never recover!” But you cannot do this. You must maintain the therapeutic relationship and build trust. Sometimes, a family is just not ready to say goodbye – and that’s ok! You, as the ICU physician, must find a way to respect their decisions while still advocating for your patient. If it means taking more time to arrange future meetings with family, so be it. If it means sitting down and readdressing goals of care frequently, so be it. You must be the best advocate for your patient.
When a family elects to have full ICU level support, please make sure to make sure that the family knows that, despite our best efforts and maximal support, critically ill patients may still code and die. In these cases, after our best efforts, we still may have to make the difficult decision to end the code, after exhausting our efforts at resuscitation.
End of life and goals of care discussions are vital to every ICU physician. Mastering these conversations is just as important as learning how to manage difficult airways or differentiating shock. The SPIKES protocol gives a great framework to build on, with the additions mentioned in the article. As a final word of advice: be kind. This is often the worst moment in a family’s life. You are forever going to be associated with the death of their loved ones. With your words and actions, you have the power to make this experience as atraumatic as possible. It is an incredible privilege to have, and I hope the article above gives you good suggestions to develop your own method of having these difficult conversations.
In the next post, we will go over end of life medications and strategies to minimize end of life discomfort for the patient, their family, and for the staff caring for the patient at the bedside.
- Every ICU physician needs to be comfortable dealing with the end of life
- SPIKES is a great framework for the end of life/goals of care conversation, with some important caveats
- You often do not have the luxury of time in creating therapeutic bonds with your patients or their families; you must find a way to be empathetic, warm, understanding, and still deliver complicated clinical information in a simple way for everyone to understand
- Actively listen to what is being said – if a family member wants to share a story, let them!
- Do not fear silence
- Always follow through on the mutually agreed upon strategy
- Be kind. This is often the worst moment in a family’s life. You are forever going to be associated with the death of their loved ones. You have the power to make this experience as atraumatic as possible if you approach the conversation in the right way
- These conversations can be traumatic for you, your trainees, the nurses, and all other members of the ICU team. Take time to debrief and reflect if you have it. Promote open communication and don’t shame anyone who feels emotional about these conversations.
- Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-11. doi: 10.1634/theoncologist.5-4-302. PMID: 10964998.
- von Blanckenburg P, Hofmann M, Rief W, Seifart U, Seifart C. Assessing patients´ preferences for breaking Bad News according to the SPIKES-Protocol: the MABBAN scale. Patient Educ Couns. 2020 Aug;103(8):1623-1629. doi: 10.1016/j.pec.2020.02.036. Epub 2020 Feb 27. PMID: 32151521.