Clinicians involved in palliative care are inclined to be sensitive to the humanistic aspects clinical practice – foremost among them being good communication.
For both children and their families choosing the time, manner, environment and context into which communication about care that is oriented towards optimizing the quality of their days throughout a disease trajectory is extremely important.
Dr. Carter is here to discuss the verbal and non-verbal communication that clinicians should be aware, as well as strategies around active listening, reflection and an effort to engage in relational communication with an allowance for timely silence, acknowledgment of suffering and emotional validation.
Finally, the importance of key words – those that may be easily taken out of context, or heard differently than intended – will be addressed.
Selected Podcast
Communication in Palliative Care: Words Matter
Featured Speaker:
Dr. Carter is Professor of Pediatrics in the School of Medicine, University of Missouri at Kansas City. He received his medical training at the University of Tennessee, completed his pediatric residency at Fitzsimons Army Medical Center and his Neonatal-Perinatal Fellowship at the University of Colorado Health Science Center. Dr. Carter is board certified in Pediatrics and Neonatal-Perinatal Medicine and is a Certified Neonatal Network Neurobehavioral Scale (NNNS) Provider, 2010, re-certified 2013 (Women & Infants Hospital, Brown University).
Learn more about Dr. Carter
Brian Carter, MD
Dr. Carter is a board certified clinician-educator trained in pediatrics, neonatal-perinatal medicine, bioethics and palliative care. His clinical practice focuses on providing intensive care to critically ill newborns and serving as a consultant neonatologist in the Fetal Health Center and for former NICU patients seen in the NICU Follow-up Special Care Clinics until age 3 years – where he is the local PI for a multi-site study of the neurobehavioral outcomes of premature infants born under 30 weeks’ gestation. He publishes, lectures, and teaches in biomedical ethics – including as Co-Director of the Children’s Mercy Certificate Program in Pediatric Bioethics and is engaged in efforts to advance pediatric palliative care generally, and neonatal-perinatal palliative care in particular. He has authored more than 100 peer-reviewed publications on pediatric and neonatal care, ethics and palliative care; and was a contributing author and editor for the 8th edition of Merenstein & Gardner’s Handbook of Neonatal Intensive Care (Mosby/Elsevier, 2015) and a textbook on pediatric palliative care, Palliative Care for Infants, Children & Adolescents (Johns Hopkins University Press, 1st Ed. 2004 & 2nd Ed. 2011). He enjoys mentoring graduate students, residents and fellows locally and across the country. In 2003 he was honored to receive the National Hospice & Palliative Care Organization’s Research Award, and in 2008 the William A. Silverman Lecture in Ethics at the Pediatric Academic Societies Meeting. He currently attends in the NICU, the Fetal Health Center, and the NICU F/U Special Care Clinic at Children’s Mercy Hospital in Kansas City, MO, as well as consults in issues of palliative care and pain management for newborns, and serves as an ethics consultant at Children’s Mercy. He is the immediate past chairman of the AAP’s Section on Hospice & Palliative Medicine.Dr. Carter is Professor of Pediatrics in the School of Medicine, University of Missouri at Kansas City. He received his medical training at the University of Tennessee, completed his pediatric residency at Fitzsimons Army Medical Center and his Neonatal-Perinatal Fellowship at the University of Colorado Health Science Center. Dr. Carter is board certified in Pediatrics and Neonatal-Perinatal Medicine and is a Certified Neonatal Network Neurobehavioral Scale (NNNS) Provider, 2010, re-certified 2013 (Women & Infants Hospital, Brown University).
Learn more about Dr. Carter
Transcription:
Communication in Palliative Care: Words Matter
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic today is “Words Matter: Communication in Palliative Care.” My guest is Dr. Brian Carter. Dr. Carter is Professor of Pediatrics in the School of Medicine, University of Missouri, Kansas City. Dr. Carter, welcome to the show.
Dr. Brian Carter (Guest): Thank you and good morning to all.
Dr. Smith: In the context of palliative care, how important is it to know what to say, when to say it and how to say it?
Dr. Carter: Arguably, those questions and the import of addressing those questions really prevail throughout all of medicine. It’s always incumbent on the physician to be able to know what to say, how to express it and when, perhaps, to bring certain things into consideration. This is, perhaps, doubly so in the context of critical care medicine and in palliative care. The reason being is that we are oftentimes contending with the limits of what medicine may have to offer and the end goals, perhaps, moving away from curative goals to comfort and quality of life goals. Interjecting those concepts into a narrative of a clinical diagnosis, a trajectory of an illness, the length of a hospitalization can be very dicey. Perhaps clinicians and parents alike would not be ready to receive such a redirection or a reconsideration of goals. So, it’s very important.
Dr. Smith: In the setting of an ICU, when is it best then to discuss palliative care options with the patient and the family?
Dr. Carter: In an intensive care setting, one has to look at the reason for admission to the intensive care unit. Generally, the reasons are life sustaining, cure-oriented intervention to rescue a patient who has a life-threatening condition or perhaps a threatened loss of vital function. Intensive care medicine often starts towards those goals and is quite accomplished in being able to achieve those goals across a broad age spectrum in pediatrics from the neonate all the way up to the college-aged young adult or adolescent. When such goals are being pursued and the interventions are meeting with frustration; that is, treatments that are offered are now not quite able to accomplish those goals, it is very important to introduce them as a consideration for what we can and what we cannot achieve. This happens in critical care medicine across the age spectrum variably from 10-20% of the time.
Dr. Smith: When we are about to discuss palliative care, do you have some advice on maybe things not to say, initially, to a patient and family members?
Dr. Carter: Oftentimes we say things because we’re wanting to be able to offer hope or some consolation. The things that really are untimely or poorly received by parents have been expressed by parents when surveyed and these include words like, “I know how you feel.” Because oftentimes a parent would express that unless you have been in my circumstance and dealt with a child having the same condition, no, you don’t know how I feel. So, wariness about that. Another consideration is the use of terms that we use every day in particular context. Oftentimes we may say, “The labs look better” or “She looks better today”. Better connotes improvement, perhaps along the lines that the hopeful parent is expecting cure to result from. But, improvement isn’t necessarily what we mean as clinicians in discussing a lab result being better or the patient’s chest x-ray looking better. So, being careful about the use of such terms as those. A third would be the phrase “doing everything”. When someone asks that you do everything for their child, I consider that an invitation to explore what everything means. Everything conceivable? Everything that you would want your child to have? Everything that is beneficial? Everything that is reasonable but not everything that might include bringing about more complications, more suffering, a protracted hospitalization that ultimately results in the child’s death. Finally, a word that would also be highly charged is when physicians use the word “futile”. To say something is futile suggests that it can’t accomplish the goal for which it is being directed. Parents might ask, “Well, it’s futile to who? When and how? It’s not futile to me if my child is still alive.” The clinician might be expressing a thought that something is physiologically futile or cannot be accomplished in a strict clinical or medical sense while the parent or family is more concerned about relationship; the fact that their child is still present and the value of that presence.
Dr. Smith: We’re not just talking about verbal communication here either, are we? What are some of the nonverbal cues that doctors should be aware of?
Dr. Carter: Nonverbally, we all stand to improve our position in communication. Facial expressions, we oftentimes don’t even realize may be conveyed unless we engage in simulation practices in which we videotape and then go through a debrief and a feedback session and see exactly how we come across in such situations. But, body posture is something we can certainly attend to. Sitting rather than standing over a patient, the use of hands, the use of silence and pause in a conversation that allows for some reflection and perhaps even digesting what was just said. Leaning into a conversation, perhaps across a table or a body posture that leans forward and looks eye to eye suggests that you are engaged in the communication process and you are hearing what is being said. Remembering that it is important to listen far more than it is to speak oftentimes in these conversations. There are some nonverbal cues. Eye movement may be something that we need to attend to. Looking into the parent or patient’s eyes is very important as opposed to shifting eye movements that really convey a sense of distraction.
Dr. Smith: At Children’s Mercy, are you providing medical students, residents, Fellows this type of training in verbal and non-verbal communication skills?
Dr. Carter: Yes, we do engage in communication training and some of that is done through the School of Medicine at UMKC. Other training exists for residents and many of the fellowship programs at Children’s Mercy have simulation labs in which such conversations are undertaken and the use of video feedback, peer feedback as well as mentoring takes place.
Dr. Smith: Last question: when it’s time to have the conversation about palliative care with the patient and the family, how important is it to bring in other people into that conversation, maybe a counselor, a social worker? Do you find that to be helpful as well?
Dr. Carter: Yes and, to be honest with you, the practice of pediatric medicine, especially in a tertiary care hospital such as Children’s Mercy is oftentimes very much team based and not solo physician based. Many clinicians will, in fact, work together in an interdisciplinary team even in the ICU or on the general inpatient wards. That meaning that there is a utilization of social workers, nurses, psychologists sometimes, child life specialists in addition to the physician him or herself. Beyond the team that might be unit or serviced based in a clinic or a ward, as mentioned, there are often added values in bringing in experts in communication through the palliative care team and sometimes when things become difficult, even utilizing an ethics consultant.
Dr. Smith: Dr. Carter, I want to thank you for all that you’re doing. I want to thank you for coming on the show today. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Thanks for listening.
Communication in Palliative Care: Words Matter
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic today is “Words Matter: Communication in Palliative Care.” My guest is Dr. Brian Carter. Dr. Carter is Professor of Pediatrics in the School of Medicine, University of Missouri, Kansas City. Dr. Carter, welcome to the show.
Dr. Brian Carter (Guest): Thank you and good morning to all.
Dr. Smith: In the context of palliative care, how important is it to know what to say, when to say it and how to say it?
Dr. Carter: Arguably, those questions and the import of addressing those questions really prevail throughout all of medicine. It’s always incumbent on the physician to be able to know what to say, how to express it and when, perhaps, to bring certain things into consideration. This is, perhaps, doubly so in the context of critical care medicine and in palliative care. The reason being is that we are oftentimes contending with the limits of what medicine may have to offer and the end goals, perhaps, moving away from curative goals to comfort and quality of life goals. Interjecting those concepts into a narrative of a clinical diagnosis, a trajectory of an illness, the length of a hospitalization can be very dicey. Perhaps clinicians and parents alike would not be ready to receive such a redirection or a reconsideration of goals. So, it’s very important.
Dr. Smith: In the setting of an ICU, when is it best then to discuss palliative care options with the patient and the family?
Dr. Carter: In an intensive care setting, one has to look at the reason for admission to the intensive care unit. Generally, the reasons are life sustaining, cure-oriented intervention to rescue a patient who has a life-threatening condition or perhaps a threatened loss of vital function. Intensive care medicine often starts towards those goals and is quite accomplished in being able to achieve those goals across a broad age spectrum in pediatrics from the neonate all the way up to the college-aged young adult or adolescent. When such goals are being pursued and the interventions are meeting with frustration; that is, treatments that are offered are now not quite able to accomplish those goals, it is very important to introduce them as a consideration for what we can and what we cannot achieve. This happens in critical care medicine across the age spectrum variably from 10-20% of the time.
Dr. Smith: When we are about to discuss palliative care, do you have some advice on maybe things not to say, initially, to a patient and family members?
Dr. Carter: Oftentimes we say things because we’re wanting to be able to offer hope or some consolation. The things that really are untimely or poorly received by parents have been expressed by parents when surveyed and these include words like, “I know how you feel.” Because oftentimes a parent would express that unless you have been in my circumstance and dealt with a child having the same condition, no, you don’t know how I feel. So, wariness about that. Another consideration is the use of terms that we use every day in particular context. Oftentimes we may say, “The labs look better” or “She looks better today”. Better connotes improvement, perhaps along the lines that the hopeful parent is expecting cure to result from. But, improvement isn’t necessarily what we mean as clinicians in discussing a lab result being better or the patient’s chest x-ray looking better. So, being careful about the use of such terms as those. A third would be the phrase “doing everything”. When someone asks that you do everything for their child, I consider that an invitation to explore what everything means. Everything conceivable? Everything that you would want your child to have? Everything that is beneficial? Everything that is reasonable but not everything that might include bringing about more complications, more suffering, a protracted hospitalization that ultimately results in the child’s death. Finally, a word that would also be highly charged is when physicians use the word “futile”. To say something is futile suggests that it can’t accomplish the goal for which it is being directed. Parents might ask, “Well, it’s futile to who? When and how? It’s not futile to me if my child is still alive.” The clinician might be expressing a thought that something is physiologically futile or cannot be accomplished in a strict clinical or medical sense while the parent or family is more concerned about relationship; the fact that their child is still present and the value of that presence.
Dr. Smith: We’re not just talking about verbal communication here either, are we? What are some of the nonverbal cues that doctors should be aware of?
Dr. Carter: Nonverbally, we all stand to improve our position in communication. Facial expressions, we oftentimes don’t even realize may be conveyed unless we engage in simulation practices in which we videotape and then go through a debrief and a feedback session and see exactly how we come across in such situations. But, body posture is something we can certainly attend to. Sitting rather than standing over a patient, the use of hands, the use of silence and pause in a conversation that allows for some reflection and perhaps even digesting what was just said. Leaning into a conversation, perhaps across a table or a body posture that leans forward and looks eye to eye suggests that you are engaged in the communication process and you are hearing what is being said. Remembering that it is important to listen far more than it is to speak oftentimes in these conversations. There are some nonverbal cues. Eye movement may be something that we need to attend to. Looking into the parent or patient’s eyes is very important as opposed to shifting eye movements that really convey a sense of distraction.
Dr. Smith: At Children’s Mercy, are you providing medical students, residents, Fellows this type of training in verbal and non-verbal communication skills?
Dr. Carter: Yes, we do engage in communication training and some of that is done through the School of Medicine at UMKC. Other training exists for residents and many of the fellowship programs at Children’s Mercy have simulation labs in which such conversations are undertaken and the use of video feedback, peer feedback as well as mentoring takes place.
Dr. Smith: Last question: when it’s time to have the conversation about palliative care with the patient and the family, how important is it to bring in other people into that conversation, maybe a counselor, a social worker? Do you find that to be helpful as well?
Dr. Carter: Yes and, to be honest with you, the practice of pediatric medicine, especially in a tertiary care hospital such as Children’s Mercy is oftentimes very much team based and not solo physician based. Many clinicians will, in fact, work together in an interdisciplinary team even in the ICU or on the general inpatient wards. That meaning that there is a utilization of social workers, nurses, psychologists sometimes, child life specialists in addition to the physician him or herself. Beyond the team that might be unit or serviced based in a clinic or a ward, as mentioned, there are often added values in bringing in experts in communication through the palliative care team and sometimes when things become difficult, even utilizing an ethics consultant.
Dr. Smith: Dr. Carter, I want to thank you for all that you’re doing. I want to thank you for coming on the show today. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Thanks for listening.