End of Life & Palliative Care

How To Tips

Values Guided Decision Support Framework (Not a script but possible framework):

From University of Michigan Palliative Care Group

1) Tell me about "Johnny." Tell me about your understanding of how he is doing ? 

2) How does he let you know how he is feeling? How does he respond to your voice, touch, etc?

3) What are you hoping for (Often parents will respond "For Johnny to get better"- "We are hoping for that too"). If that hope doesn't happen, what are your other hopes? What else is important (ie being outside, meeting his grandmother, etc)

4) What are you most worried about? What are others in your family most worried about?

5) Based on what you've told me about Johnny, your hopes and worries, and what we know about Johnny's situation...

        - Would it be alright if I make a recommendation?

        - It sounds like what we should plan to do is.....

        - It seems like the best decision to be made is.....

6) Give a period of silence to listen for questions, agreement, concerns etc...

Code Status Discussions

Don’t Say:

Do Say:

Futility/Medically Ineffective Care Discussion

Don’t Say:

Do Say:

Introducing Palliative Care to Patients

Do Say:

Goals of Care Discussions

Additional Pearls:

1) In regard to asking parents/guardian about autopsy (mandatory at UM):  "Autopsy is something the hospital offers as a service to all families. It is free of charge, does not affect the funeral or prevent an open casket viewing, and sometimes families find it helpful to learn more about what happened. It is completely optional."

2) In responding to "How do you know for sure that he/she is going to die?"  We can never be 100% sure and we know he has beaten the odds many times but in our experience, we haven't seen children in Johnny's situation survive. Based on how he is doing and this experience, we have no expectation that he will survive. 

3) Using the word "naturally" sometimes helps (ie the body naturally stops processing nutrition, the body naturally stops breathing etc)

4) Regarding concerns about the "death rattle": If it does occur, it is a minimal amount of fluid causing that sound and while it may be distressing to us, is not distressing to Johnny. He will not feel like he is drowning. It is something like when you are drinking from a straw and there is only a tiny bit of liquid left. That little bit causes a lot of sounds as you try to drink and it is the same...a tiny bit of fluid around the back of his throat causes that sound.

Symptom Management at End of Life


1) Get Palliative Care: For Clinicians

2) Grief and Bereavement in the PICU (Presentation by Dr. Tsovic Arutyunyan)

3) Pediatric Death Toolkit (Courtesy of Christina Turn, MD) 


1) Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-lifecare in the pediatric intensive care unit: parents' priorities andrecommendations. Pediatrics. 2006 Mar;117(3):649-57.

2) Truog RD, Campbell ML, Curtis JR, Haas CE, Luce JM, Rubenfeld GD, Rushton CH, Kaufman DC; American Academy of Critical Care Medicine. Recommendations forend-of-life care in the intensive care unit: a consensus statement by theAmerican College [corrected] of Critical Care Medicine. Crit Care Med. 2008Mar;36(3):953-63.

3) Sykes N, Thorns A. The use of opioids and sedatives at the end of life. LancetOncol. 2003 May;4(5):312-8. Review. PubMed PMID: 12732169.

4) de Vos MA, Bos AP, Plötz FB, van Heerde M, de Graaff BM, Tates K, Truog RD,Willems DL. Talking with parents about end-of-life decisions for their children. Pediatrics. 2015 Feb;135(2):e465-76. doi: 10.1542/peds.2014-1903. Epub 2015 Jan5. PubMed PMID: 25560442.

5) Tucker Edmonds B, Torke AM, Helft P, Wocial LD. Doctor, What Would You Do? An ANSWER for Patients Requesting Advice About Value-Laden Decisions. Pediatrics.2015 Oct;136(4):740-5. doi: 10.1542/peds.2015-1808. PubMed PMID: 26416929.

6) McGowan, T. Will you forgive me for saving you? NEJM 2018

7) Temel et al, Early Palliative Care For Patients with Metastatic Non-Small Cell Lung Cancer, NEJM 2010.

8) Is it Always Wrong to Perform Futile CPR, R Truog, NEJM 2010