Yin And Yang In Palliative Care: When East And West Collide

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Yin and Yang inPalliative Care:When East andWest CollideStacy C Smith MLS BSN RN CHPPNDonald R Cochran MDM Heather Paterson MS RN CPNP-PC CHPPNPalliative Care Program Children’s MedicalCenter Dallas

Case One: Corey Healthypregnancy, 36 week gestation,healthy male Parents from Taiwan, no family support inUSA Parents married, own a home in thesuburbs Parents very educated, both work incomputer and information technologysector

DOL 2: Jaundiced. Phototherapy for 7 days.DOL 11: referred to ED from a local pediatricacute care clinic with one day history offussiness and fever 101, hypoglycemia,neutropenia.In ED: Sepsis work-up done. Began to haveapnea, was given fluid bolus and abx startedAdmitted to PICU.

Conditionworsens, transferred toChildren’s main campus’ NICU. Brain scans show worsening edema,diffuse inflammatory exudates, laminarnecrosis, bilateral temporal and anteriorfrontal empyemas. Dx: E. Coli sepsis and meningitis. Prognosisis very poor.

Hospitalday 15 Palliative Care consulted,discussion includes withdrawal of nonbeneficial life-sustaining treatment. Parents ask to postpone decision untilafter IV abx therapy and follow up brainscan are completed. At this time he is on day 15/21 of abx.

Infant is slowly weaned from ventilator andsuccessfully extubated to NC oxygen onhospital day 17.Tolerating NGT feeding. Vigorous suck. Beginsto take oral feedings over next days but notconsistently able to tolerate full po feeding.MRI on hospital day 21: brain atrophy,encephalomalacia, continued large subduralempyemas.

Care Conference Hospitalday 24 Poor prognosis, likely moderate-to-severeglobal developmental delays. Continues to take almost all feedings bymouth. On room air. ID recommended 21 more days of abx

Baby Doe Regulations Asa precondition for receipt of federalfunds for CPS, Texas certifies that it haspolicies and procedures in place toensure that “medically indicatedtreatment” is provided to infants (up to 12months) “Medically indicated treatment”:treatment needed to maintain lifeSlide created by Thomas W. Mayo, JD, used with permission

Exceptions: When infant is permanently unconsciousWhen treatment would be futile in terms ofsurvivalWhen treatment would be “virtually futile”(in terms of survival) and the treatment itselfwould be inhumane (in terms of pain)Slide created by Thomas W. Mayo, JD, used with permission

Exceptionsto exceptions (i.e., thesetreatments are always “medicallyindicated” (required to be provided)): “appropriate nutrition [and] hydration”“appropriate . . . medication”Slide created by Thomas W. Mayo, JD, used with permission

More information from thecare conference .

Questions Can his parents take him home and not feedhim?If he required a GT for feeding, could hisparents successfully refuse?Can his parents refuse another 21 day courseof antibiotics?Is he a candidate for hospice and OOH DNR?Should parents be allowed to refuserecommendations for medical treatment?

Outcome Discharged33. And home on DOL 44, hospital day

Case Two: Loretta Thirteeny/o female, S/P heart transplant2006 for complex CHD Dx summer 2010 with osteosarcoma inright mastoid Underwent treatment at Children’s andsought treatment at two other facilities Elected to stop treatment in 2011

Parentsare married, educated and bothemployed in communications industry From China, both patient and heryounger brother were born in China

Electedto follow up with easternmedicine and herbal treatments. Loretta was admitted late 2013 in septicshock Pancreatitis Noted to have blasts on peripheral smear,mother declined oncology work-up

Mothercontacted eastern medicinepractitioner to come to Dallas Requested that he be allowed to assessand treat Loretta in PICU Specific treatments to includeacupuncture and herbal tea infusions Chi

Care Conference Parents Easternmedicine practitioner PICU attending Transplant team Palliative Care Support services Pharmacist

Ethics Conference PalliativeCare Ethics committee representing PICU,Oncology, Pastoral Care, communitylegal genius Hospital legal representative PICU nursing Pastoral Care

Questions Shouldmother be allowed to opt out ofheme/onc dx? Should the non-credentialed provider beallowed to Examine the patient?Perform acupuncture?Prescribe herbal supplements?

Ifyou were Loretta’s nurse or resident,would you be willing to participate in thealternative treatment plan? Should parents be allowed to direct care?

Here’s what happened .

Current status

Case Three: Sara Twelveyo female with Gorham’s disease,dx approximately six years ago Recurrent pleural effusions, very fragile Transfusion dependent Pleurovenous shunt placed a year ago Admitted with respiratory distress

Parentsfrom China, divorced One older brother Both parents engineers PTA Sara was attending school

Atleast one parent at bedsidecontinuously Problems with hygiene, painmanagement Parents often declined physical exam,sometimes declined blood products andIVF Sara rarely spoke, looking to parents tocoach answers

Worseningrespiratory distress Continued disease modifying tx despitemedical communication that she wasnearing the EOL Parents wanted radiation therapy,medical team declined. Parents calledradiologist and arranged on their own fortreatment.

Startedpain medication continuous plusPCA, mother would move PCA button outof Sara’s reach. Other disruptive behavior, but no onewanted to separate parents and childwhen she was clearly nearing the EOL.

Questions Howshould pain be managed whenparents deny their child’s pain? Is it acceptable for parents to demandtreatments that the medical team do notbelieve are indicated? What steps should the care team takewhen disruptive behaviors have thepotential for harm?

What happened to Sara?

Dx summer 2010 with osteosarcoma in right mastoid . PICU nursing Pastoral Care . Questions . If you were Loretta’s nurse or resident, would you be willing to participate in the alternative treatment plan?

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