#62: Pediatric Palliative Care – Everything You Wanted to Know, But Were Too Afraid to Ask

September 7, 2022 | By Sam Masur

Summary

Confused about pediatric palliative care? Dr Priyal Patel sheds light on this much misunderstood specialty, teaches you which children should be referred and why, what palliative care teams really do and how you can have challenging conversations.

Credits

• Producer: Jennifer Chisholm MBBS, Christle Nwora MD, 
• Executive Producer: Nicholas Lee MD
• Showrunner: Sam Masur MD
• Writer: Jennifer Chisholm MBBS
• Infographic: Jennifer Chisholm MBBS
• Cover Art: Chris Chiu MD
• Hosts: Justin Berk MD, Chris Chiu MD, Christle Nwora MD 
• Editor:Justin Berk MD; Clair Morgan of nodderly.com
• Guest(s): Priyal Patel DO

Palliative Care Pearls

1. End of life (hospice) care is only a small area under the ‘umbrella’ of palliative care
2. Palliative care teams can help with communication within a large complex treatment team, managing symptom burden and decisional support for children with chronic, complex or potentially life-limiting conditions
3. Earlier pediatric palliative care involvement leads to better outcomes for kids and should not be delayed until a child is at the end of life
4. Important techniques for effective communication with patients and families include prioritizing listening, asking open-ended questions, utilizing an “empathetic pause” rather than rushing to fill silence and using non-judgmental language 
5. Using medical interpreters is mandatory if there is any possibility that a family member may not fully comprehend English. 
6. When using interpreters, clinicians should ensure that they speak the correct dialect and brief them beforehand. 
7. When using interpreters, clinicians should speak directly to the patient and their family, not the interpreter and avoid euphemisms as they are especially likely to be misunderstood through translation. 
8. A ‘good death’ for a child is highly individual and it is important to not impose personal views and biases regarding death onto a child and their family.

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Pediatric Palliative Care Notes

What Does Palliative Care Do?

Pediatric palliative care is a widely misunderstood specialty, even amongst clinicians.

Role of Palliative Care

• Dr Patel’s expert opinion is the work of palliative care can be best understood as falling within three categories: communication, decisional support, and symptom management
• Communication needs can be complex for a child who requires multiple specialists and multidisciplinary team members for their care. Dr Patel describes palliative care physicians as adept at communicating with a large treating team, each member of which may have a narrow focus, to clarify common goals and bring everyone “on the same page”. 
• Most major decisions made for a child with a chronic, complex, or potentially life-limiting condition do not have clear cut answers. Palliative care can help families understand the goals they have for their child and the benefits and burdens of the options they have in order to support decision making.
• Symptom management entails reducing anything that causes distress. This includes pain, delirium, and emotional distress. Palliative care teams are multidisciplinary and are thus equipped to treat symptoms with a variety of modalities, for example using massage therapy and psychotherapy alongside pharmacological approaches to treating pain.

Common Misconceptions 

• Palliative care physicians are not “death doctors”, end of life care is only one part of their work
• Referring a child to palliative care does not guarantee their family will decide to change their status to DNR
• Although palliative care teams can provide families with a great deal of multidisciplinary support, they remain constrained by the systems they operate in and may not be able to give a family access to all desired resources

Referral to Palliative Care Services

• Any palliative care referral for any child who has a condition with:

•  Significant symptom burden 
• Large treatment team 
• Complex decision-making needs 
• Bone marrow transplant or solid organ transplant 
• Severe cardiac defects (e.g. single ventricle)
• Trisomy 13 and 18
• Malignancies such as: high risk sarcoma, high risk neuroblastoma, high grade gliomas 
• Expert opinion: For children with potentially life-limiting conditions, Dr Patel stresses the importance of not referring at “the 11th hour” when they are close to death, as this does not provide palliative care teams with the time they need to establish rapport and develop a deep understanding of the patient and their goals of care. 
• Many institutions offer multidisciplinary outpatient palliative care services 
• Unlike adults, children enrolled on Medicaid can access ‘concurrent care’ which means they can simultaneously receive hospice care and curative care. An example of this is a child simultaneously receiving chemotherapy and hospice care. 
• In Dr Patel’s expert opinion, trigger consults are an important component of ensuring children have timely and appropriate access to palliative care services. An example of this having automatic palliative care consults for any child undergoing bone marrow transplant or solid organ transplantation. 

Communication With Patients and Families 

• Dr Patel recommends beginning initial conversations with open-ended questions to ascertain a family’s understanding of their child’s condition and management, for example “tell me what you have been told so far”
• When sharing difficult news, Dr Patel suggests utilizing a technique known as an “empathetic pause” (October et al. 2018) – counting to 20 silently rather than filling gaps in the conversation. This encourages families to communicate further. 
• Dr Patel encourages taking an empathetic rather than didactic approach to communication. For instance, if a parent expresses a seemingly unrealistic hope, an empathetic response would be “I hope for that too. However, I worry that with the evidence we have that doesn’t seem likely. What are some other hopes you have for your child?”
• Studies have shown physicians are not able to reliably predict prognosis (Glare et al. 2003). Dr Patel advises communicating estimated prognosis as a range – “hours to days”, “days to weeks”, “weeks to months”, and also acknowledging uncertainty. 

Communicating With Interpreters 

• Professional medical interpreters should always be used if there is uncertainty regarding a family member’s English comprehension 
• Family members should never be put in an interpreter role
• Prior to a difficult conversation, interpreters should be briefed to ensure they feel prepared and comfortable with the conversation (NCP Guidelines, 4th edition)
• Clinicians should not direct their conversation towards the interpreter rather than the patient and family
• Euphemisms  should be avoided; they are unlikely to be translated clearly. For instance, the euphemism “passed away” could be more clearly expressed as “died”. Expert opinion: Even when explicit language is used translators may change the verbiage 
•  Many words and concepts cannot be perfectly translated, Dr Patel notes that the terms “palliative care” and “hospice” do not exist in several languages

Goal

Listeners will explain the role of pediatric palliative care, which children can be referred and strategies for effective communication.  

Learning Objectives

After listening to this episode listeners will…  

1. Recognize the importance of early referral to palliative care
2. Be familiar with the role of palliative care providers
3. Describe which patients may benefit from palliative care services beyond end-of-life care
4. Feel comfortable with best practices for utilizing medical interpreters

Disclosures

Dr Priya Patel reports no relevant financial disclosures. The Cribsiders report no relevant financial disclosures. 

Citation

Chisholm J, Nwora C, Priyal P, Lee N, Masur S, Chiu C, Berk J. “#62: Pediatric Palliative Care – Everything You Wanted to Know, But Were Too Afraid to Ask”. The Cribsiders Pediatric Podcast. https:/www.thecribsiders.com/ September 7, 2022.