End of Life & Palliative Care

How To Tips


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

  • Do not offer something that is not believed to be of clinical value.
  • Affirm that everything possibly beneficial is being done before an arrest/code status situation. We are not “saving care for a later time."
  • Discuss likely outcomes in a realistic context: i.e. <5% of all inpatients survive a code to pre-arrest function.

Don’t Say:

  • "If your heart should stop, would you like us to restart it/bring you back?” (We can’t guarantee this outcome.)
  • “If your heart should stop, would you like us to do all we can do to help you?” (We should always be doing all we can to help patients.)
Do Say:
  • “Have you thought about how you might want things to be if you were much more ill?”
  • “What do you expect to happen with CPR/intubation?”
  • "What do you think would be done differently after resuscitation efforts that aren’t being done now?"
  • "Our medical experience is that patients with advanced disease like yours do not benefit from attempts to revive them, but instead undergo unnecessary trauma and suffering. We recommend that we provide maximum treatment for your symptoms and pain, but we do not recommend the use of chest compressions, breathing machines or other artificial means at this time. I’d like to get your thoughts and feelings about our recommendations.”

Futility Discussion

  • Care is never futile. Patients are never futile patients.
  • Specific interventions may be futile.

Don’t Say:
  • “There is nothing more we can do.” (We can always provide care.)
  • “We suggest withdrawing care.” (We never withdraw care, we discontinue ineffective interventions.)

Do Say:
  • “Everything that is beneficial will continue to be done.”
  • “We will never stop aggressively caring for you (your loved one).”
  • “What would you like to do in the time you have left?”
  • “What would help you with being comfortable?”
  • “I wish we had the treatment that could give you the outcome we all desire. But we find ourselves at the point at which the disease focused treatments (ventilation, antibiotics, TPN, anti-cancer treatments, etc.) we have to offer stand to do no good and likely may harm you. One option I think we should consider as we continue our aggressive care of you and your family is to stop the ineffective treatment and to actively focus our efforts on doing our best to ensure that you are comfortable, spending time doing the things you are able to do.”

Introducing Palliative Care to Patients

  • Inform your patients of why you are referring to palliative care.
  • Emphasize the positive aspects of what palliative care can do.
  • Address any misconceptions that palliative care is the same as hospice
Do Say:
  • “I’d like to have some consultants from our Palliative Care Team see you. They have particular expertise in treating symptoms you are experiencing and are good at helping you and your family deal with all the changes brought on by your illness and in helping you plan for the care your want now and in the future.
  • “It seems like we need to do some sorting out of some of your goals and what is the best care we can provide for you. I'd like to ask the Palliative Care Team to come and meet with you and your family to give us some assistance. They can address concerns and questions about… ”

Goals of Care Discussions

  • Begin with patient’s goals.
  • Talk about probable outcomes not just “best case” possibilities.
  • Ask about goals before planning interventions.
  • Interventions are not goals; they are tools to reach goals.
  • Golden Question: “Will this help the patient achieve her/his goals?”
  • Shared Decision Making Model
  • Provider and Patient share in finding the best choice based on patient’s values, provider’s medical knowledge and evidence based practice.
  • Avoid Paternalism--Provider decides everything and informs patient.
  • Avoid Unbridled Autonomy –Patient decides everything and demands care that is medically unsound.
  • Avoid speaking Medical-ese. Use common, easily understandable words.
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




Approach to Anticipated Pediatric Death




Resources

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

References

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.
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.