Pediatric Palliative Care Cases

Pediatric Palliative Care CasesMarch 25, 2010 : 

Pediatric Palliative Care CasesMarch 25, 2010 The Basics & Research An Emotional CaseCommunications?When All Else FailsA “Difficult Parent?” Frank’s Not Here! Evil Morphine Neonatal Care

Principles of Palliative Care : 

Principles of Palliative Care AAP: “promote the welfare of infants and children living with life-threatening or terminal conditions and their families, with the goal of providing equitable and effective support for curative, life-prolonging, and palliative care”. Respect for the Dignity of Patients and Families Access to Competent and Compassionate Palliative Care Support for the Caregivers Improved Professional and Social Support for Pediatric Palliative Care Continued Improvement of Pediatric Palliative Care Through Research and Education

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An Emotional Case : 

An Emotional Case 16 year old athlete c/o headaches of 1 month.Went to pediatric neurologist, MRI showed BSG. Patient was told to see oncology. Very kind patient and mother arrived @ MCCP. Both were calm. Exam showed ataxia. Family wanted information. Oncologist and SW talked amongst themselves, mostly just trying to get the strength to tell the truth. Fleetingly, we considered not to tell them ALL of the truth. Soon we realized that approach doesn’t really benefit the patient & family. Very politely, we told dx of brainstem glioma and average survival of ~ 9 months. Mom and patient hugged each other.

An Emotional Case : 

An Emotional Case What Just Happened? Emotions Sorrow Fears – crying; inept; hurt the family Can’t do anything Professionalism It’s my job Who else can do this? Boundary issues

An Emotional Case : 

An Emotional Case Return to Home Page

The Importance of Medical Communications : 

The Importance of Medical Communications Health care communication is a critical, but generally neglected, component of pediatric and pediatric subspecialty practice and training and is a skill that can and must be taught. Taking time to build rapport and understand the child and family builds trust, leading to increased reporting of the actual reason for the visit. Poor communication, on the other hand, can prompt lifelong anger and regret, can result in compromised outcomes for the patient and family, and can have medicolegal consequences for the practitioner. Marcia Levetown, MD, and the Committee on Bioethics Pediatrics, Vol121, #5, May 2008

Three elements of physician-parent-child communication : 

Three elements of physician-parent-child communication Informativeness: quantity and quality of health information provided by the physician; Interpersonal sensitivity: affective behaviors that reflect the doctor’s attention to, and interest in, the parents’ and child’s feelings and concerns; Partnership building: the extent to which the physician invites the parents (and child) to state their concerns, perspectives, and suggestions during the visit.

Communication Skills : 

Communication Skills

Communications? : 

Communications?

Communications? : 

Communications? Rate this physician’s skills Bad Good How do you think the woman felt?

Better Communications : 

Better Communications Time & Interruptions Acknowledge that the patient is primary Pages & phone calls: defer or avoid Clarify time constraints Plan a continuation of the discussion

Better Communications : 

Better Communications

The Empathic Response --This is your most important skill : 

The Empathic Response --This is your most important skill A verbal technique that acknowledges you have heard the patient’s emotional content. No requirement to feel the emotion. Steps: Identify the emotion – open-ended questions Identify its cause Respond in a way that shows you understand the connection between 1 and 2 Why is this important? - Validation

Techniques - The CLASS System : 

Techniques - The CLASS System Context (Physical Setting) Listening Skills Acknowledgement Strategy Summary

Office Context - Bad : 

Office Context - Bad

Office Context - Good : 

Office Context - Good

Office Context - Good : 

Office Context - Good

Office Context – Support People : 

Office Context – Support People Support Person Patient

Office Context – oops! : 

Office Context – oops!

Bedside Context - Bad : 

Bedside Context - Bad

Bedside Context - Good : 

Bedside Context - Good

Context - Review : 

Context - Review Space - Ensure Privacy & Comfort Sit while talking Your eyes at patient’s eye level, about two feet of unobstructed space Tissues Available Support People Seated next to patient Body Language & Eye Contact Look relaxed Maintain eye contact as appropriate

Clarifying : 

Clarifying Know exactly what the patient is saying Examples: “Let me see if I’ve got this straight…” “So what you’re saying is…” “Do you mean ____ or ___ ?” Use a social worker or other facilitator

Principles : 

Principles A reasonable plan the patient will follow is better than an ideal plan the patient will ignore. Any plan is far better than no plan

Summary : 

Summary Summarize main points Any urgent questions? Plan next contact: Time Setting Return to Home Page

Pediatric Palliative Care Cases : 

Pediatric Palliative Care Cases When All Else Fails 2 year-old boy with hepatoblastoma. Treated with tumor resection, chemotherapy, radiation Rx. Active disease remained. Developed increasing systemic pain. Increasing narcotic requirements, temporarily effective.

When All Else Fails : 

When All Else Fails Weekend Rounds Pt in global, severe pain, screaming frequently. No change with increasing morphine and fentanyl. Mother requested euthanasia. (Maine)

When All Else Fails : 

When All Else Fails Why did the pain increase Narcotic Tolerance The role of NMDA (N-methyl-D-aspartic acid) is summarized: 1. NMDA receptors become activated and when in- hibited, prevent the development of tolerance and OIH (14-16). 2. The glutamate transporter system is inhibited, therefore increasing the amount of glutamate available to NMDA receptors (17). 3. Calcium regulated intracellular Protein Kinase C is likely a link between cellular mechanisms of toler- ance and OIH (16,18,19). 4. Cross talk of neural mechanisms of pain and toler- ance may exist (20,21). 5. Prolonged morphine administration induces neu- rotoxicity via NMDA receptor mediated apoptotic cell death in the dorsal horn (22).

When All Else Fails : 

When All Else Fails What do you do? How long do you wait? Methadone (vs. other narcotics) Rotation if needed Add IV Ketamine Add IV Lidocaine Then What?

When All Else Fails : 

When All Else Fails Euthanasia? DHHS? Palliative Sedation

Barbiturates in the Care of The Terminally ill : 

Barbiturates in the Care of The Terminally ill Barbiturates: Reliably produce sedation and unconsciousness (comfort) Are used in the execution of prisoners by lethal injection Ethical Considerations: The Principle of Double Effect -- Distinction between intended effects and unintended although foreseen effects. If comfort care is the only intended effect, then Truog, Robert D., et. al. NEJM, 1992, Vol. 327, No. 23, 1678-81

Barbiturates Are Justified : 

Barbiturates Are Justified To relieve physical suffering when all reasonable alternatives have failed To produce unconsciousness before terminal extubation Produce deep sedation and unconsciousness as a means of relieving nonphysical suffering

Prescribing terminal sedation : 

Prescribing terminal sedation Adults: Slowly increasing doses of midazolam 0.5 mg – 8 mg/h iv (or other benzodiazepine), aimed at achieving effective symptom control Pediatrics: Anecdotally, most providers use barbiturates: Pentobarbital Barbiturates are capable of producing all levels of CNS mood alteration from excitation to deep coma. Overdosage can produce death. Barbiturates are respiratory depressants. The degree of respiratory depression is dependent upon dose.

Pentobarbital continued : 

Pentobarbital continued Following IV administration, the onset of action is 1-5 minutes The plasma half-life for pentobarbital in adults is 15 to 50 hours and appears to be dose dependent The duration of each IV injection is 15-45 minutes The recommended pediatric dosage ranges from 2 to 6 mg/kg as a single IM injection not to exceed 100 mg Translated to palliative sedation: Dosing is titrated to comfort, and thus the effective dose may vary with the situation 1-3 mg/kg slow IV push X 1 and repeat every 2-5 min until adequate sedation. Further scheduled based on patient responses Consider a continuous infusion based on initial result – 0.5-1 mg/kg/hour is a reasonable starting dose; 1-3 mg/kg/hr is used for barbiturate coma. Ongoing observations & adjustments to maintain comfort

WARNINGS : 

WARNINGS Barbiturates may be habit forming IV administration Too rapid administration may cause respiratory depression, apnea, laryngospasm, or vasodilation with fall in blood pressure. Acute or chronic pain Paradoxical excitement could be induced or important symptoms could be masked. However, the use of barbiturates as sedatives in the postoperative surgical period and as adjuncts to cancer chemotherapy is well established. Use in pregnancy Barbiturates can cause fetal damage when administered to a pregnant woman.. Withdrawal symptoms occur in infants born to mothers who receive barbiturates throughout the last trimester of pregnancy. Return to Home Page

“Difficult Parent?” : 

“Difficult Parent?” 3 year-old boy with Lennox–Gastaut Syndrome, left side tracheal-bronchomalasia, respiratory failure, seizure disorder Received a tracheotomy at 6 months of age Required a gastrostomy tube early in life Multiple seizures Multiple EMMC visits, weakening over the last year Hospitalized at Eastern Maine Medical Center ICU for about one month due to respiratory failure. The child required oxygen at approximately 6 L/min continuously.

“Difficult Parent?” : 

“Difficult Parent?” The mother acts as his primary caretaker, and gets assistance from in-home nursing support. The mother spent a great deal of time outlining the difficulties she has had with the MaineCare system. She found an advocate who has connections to the government, who apparently has the ability to meet the mother's needs. I was unable to determine to what degree these needs were clearly necessary for the patient and what needs might have been marginally necessary or superfluous. She has an in-home “ICU” she manages with help.

“Difficult Parent?” : 

“Difficult Parent?” Present Medications: 1. Keppra, 1000 mg b.i.d. 2. Klonopin, 0.5 mg b.i.d. 3. Zonegran, 300 mg b.i.d. 4. Carnitor, 330 mg b.i.d. 5. Robinul, 0.4 mg b.i.d. 6. calcium carbonate, 900 mg daily 7. Topamax, 50 mg b.i.d. 8. Ativan, 2 mg t.i.d. 9. potassium chloride, 2.66 mL b.i.d. p.r.n. hypokalemia 10. Polycitra, 7.5-ML q.i.d. 11. Lasix, 5 mg daily 12. Prevacid, 15 mg b.i.d. 13. Centrum, one quarter tablet daily 14. melatonin, 3 mg nightly 15. Miralax, 17 g daily 16. p.r.n. medications as follows: Combivent, Tylenol, Flovent, polymyxin eye drops, fleets enemas, albuterol, cortisone ointment, topical nystatin, Diastat 7.5 mg for seizures, Carafate applied to the stoma,

“Difficult Parent?” : 

“Difficult Parent?” Social History The patient has an older sister. Her parents are divorced, and she sees both of them frequently. The patient’s biological father was initially involved, but left the marriage in infancy. One of our staff members felt that they heard that the father left due to conflicting goals for the patient and inability to solve it.

“Difficult Parent?” : 

“Difficult Parent?” Spiritual History The mother is Christian, and raises her daughter in that religion. She discussed her beliefs and her goals for the patient extensively. She is still struggling with deciding her goals. She did state that she would not want cardiopulmonary resuscitation if that were necessary, but was unable to commit to signing a form. We told her that she could tear it up at any time, but that did not change her mind. She also strongly wished that the patient not have an intraosseous needle placed. She felt that that would be an excessively invasive intervention, but later noted that it might be allowed if necessary. We discussed with her the concept of goals of care, and that she can make choices for the patient . The mother acknowledged that concept, but also noted that she feels God will decide what would happen to the patient .

“Difficult Parent?” : 

“Difficult Parent?” Review of Systems During the early part of our visit, the patient ’s oxygen saturations began to drop into the high 80s. I was able to hear good breath sounds bilaterally with faint rales. The mother provided chest physiotherapy numerous times without success. She gave a dose of Combivent. The nurse frequently suctioned the tracheostomy site, without production of secretions. Since that was new to the family, I chose to observe how they operated. The nurse ultimately rechecked the oxygen tanks, and found that the pressure had dropped dramatically in the main tank. She switched to the secondary tank, and the patient 's saturations rose into the high 90s rapidly. He was on 8 L/min of oxygen at that time. Based on certain eye motions, the mother noted that she feels the patient has had periodic discomfort over the past few months that had not previously been as severe. She also noted that recently the patient would develop high fevers and tachycardia of uncertain etiology. They would spontaneously resolve.

“Difficult Parent?” : 

“Difficult Parent?” Physical Examination He was not moving, and had random upward and lateral emotions bilaterally. It was not clear if the eye motions were related to any specific stimuli. He had occasional mouth motions. No definitive smile could be found. the patient has chronic blepharitis Mental Status: Awake with eye motions ? purposeful Sensory: No activity to stimulation Motor Strength: Week throughout. There is approximate 3 beat ankle clonus bilaterally. Somewhat tight ankle cords

“Difficult Parent?” : 

“Difficult Parent?” Why did everyone feel that the mom is difficult? Can we really know the answer? Could early interventions have changes things? Who is suffering? Is the cost “worth it” – what is futile? Is mom’s approach ethical? Autonomy/Beneficence /Non-maleficence

Ethics Can Be Difficult : 

Ethics Can Be Difficult

“Difficult Parent?” : 

“Difficult Parent?” How can we help this situation? Offer mom counseling; spiritual counseling Return and discuss goals of care in more detail. Invite mom’s fiancé. Staff de-briefing Ethic Conference Any other ideas? Return to Home Page

Frank’s Not HereEthics by Fire : 

Frank’s Not HereEthics by Fire Medical Ethics – Principles Case Discussions Holoprosencephaly Spinal Muscular Atrophy Benefit of Using an Ethicist

Principles : 

Principles Autonomy Refers to the capacity of a rational individual to make an informed, un-coerced decision. Beneficence The state or quality of being kind, charitable, or beneficial Non-maleficence "Non-maleficence" is defined by its cultural context. Every culture has its own cultural collective definitions of 'good' and 'evil’ The principle of non-maleficence is not absolute, and must be balanced against the principle of beneficence Eg.: Phase 1 trials, Euthanasia

Ethic Cases : 

Holoprosencephaly SMA Leukemia Ethic Cases

Sarah : 

Sarah

Sarah : 

Sarah Sarah is a 2-week-old infant born with a-lobar holoprosencephaly, a congenital defect involving midline facial and brain development. This defect was seen on several in-uterine ultrasounds. She has a cleft lip and palate and seizures. She also has diabetes insipidis (makes a large amount of urine), because the pituitary is missing and the brain does not make vasopressin (controls urine). Because of this disorder, it is possible she could dehydrate quickly, if she is not drinking or receiving liquid through a feeding tube continuously. This can be controlled with medication. She will likely be severely developmentally delayed and her life span cannot be predicted with accuracy. Her diabetes insipidis and seizures may be difficult, if not impossible, to control.

Sarah : 

Sarah After lengthy, separate post-natal discussions with the family (medical team included genetics, neonatology, chaplain, physical therapy, nursing, and endocrinology), the parents decide they would like to receive palliative care, and they want Sarah to receive therapy for diabetes insipidis. They would like her to receive Phenobarbital (an anti-seizure medication) for the seizures, because it appears to decrease the severity and frequency of seizures, making Sarah more comfortable. The neonatologist ordered a palliative care consult. During the discussion with the palliative care team, the family voices concerns about taking Sarah home. They are fearful of death at home and how their 3-year-old son and 7-year-old daughter would react. They stated that they know Sarah may only live a couple of weeks, but she might live several years.

What do you think? : 

What do you think? Autonomy Beneficence Non-maleficence ? Ethical ? Ethical, but why are they doing this? ? Ethical, but isn’t this neglect? What went wrong with communications? What are negatives / positives for going home?

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Spinal Muscular Atrophy - 1

Artie : 

Artie Artie is an eight-month-old boy with spinal muscular atrophy. Nasogastric tube feedings were initiated due to his increasing difficulty with oral feedings and resultant aspirations. Artie was tolerating his feedings well for approximately three weeks, before increasing secretions and pulmonary congestion led to significant reflux and a decline in his status. The family was approached by a physician and a chaplain to consider discontinuing the feedings to improve quality of life by reducing secretions and relieving dyspnea. Artie’s parents were in agreement, but they expressed a concern that negative judgments would be brought against them by other family members who were adamantly opposed.

Helping Artie : 

Helping Artie What are other options to improve QOL without withdrawing support? Pulmonary Vest Morphine, oxygen, fan for dyspnea control Consider Robinul (dries oral secretions) ? Tracheotomy Why are the other family members opposed to withdrawal? Fear; Spiritual Beliefs; ?Suicide, Misinformation, Control, Ethics, Culture, Denial

Artie : 

Artie Autonomy Beneficence Non-maleficence What do you think about stopping nutrition? Does it improve QOL here?...is it ethical? What could be done to ease Artie’s parents’ concerns and allow them to proceed with their initial decision?

Artie : 

Artie Artie continued to decline. He was now imminently dying. His parents decided before they left the hospital that they wanted him not to undergo fruitless CPR. His DNR status was shared with the extended family, who again were in disagreement with the decision. Artie almost died at home in her mother’s arms. He was unsuccessfully resuscitated by the local EMS after 911 was called by a family member. Artie’s mother showed the DNR to the paramedics, but they ignored her and continued their efforts. Artie endured intubation and chest compressions for over 30 minutes before he was pronounced dead in the ER of the community hospital.

Family Dynamics & Ethics : 

Family Dynamics & Ethics Review the ethical dilemmas Emotions Culture Religious Denial Medical Practices (DNR order ignored)

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision : 

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision A 7-year-old boy had a second recurrence of acute lymphoblastic leukemia. His leukemia was first diagnosed when he was 19-months-old. The first recurrence occurred less than a year after completing the three-year treatment protocol, and the second recurrence occurred 8 months after completing the treatment for relapsed leukemia. As his mother pointed out to the treating team, her son had had very few months in his life of feeling healthy. She conveyed reluctance to continue any curative efforts, preferring instead to have her son discharged from the inpatient unit so that she could take him home.

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision : 

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision The attending physician, an internationally recognized expert in the treatment of leukemia, strongly disagreed with the mother's stated preference and offered her information on the likelihood of cure (admittedly low) and emphasized his desire to continue curative efforts. When the mother firmly declined the option of further treatment, the physician told the mother that he considered the discharge to be "against medical advice" and noted that in the medical record. A nurse on the team later approached the physician and proposed a meeting with the team and an ethicist to discuss the decision. The physician agreed and the full team met a week later with palliative care and an ethicist.

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision : 

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision The physician honestly acknowledged his sorrow about the child's incurable disease, how much he liked the child, and his concern that because the mother disagreed with his recommendation of further treatment, the health care team might think less of him as a physician. The team and the ethicist reacted with surprise at the last admission and conveyed instead their strong respect for him and his efforts to be a good doctor and for the mother's efforts to be a good parent. The physician offered to write a letter to the mother expressing the team's support of her and her child and that the child would always have complete access to all of the care setting's resources. The mother telephoned the physician after receiving the letter to express her relief. Three weeks later, the mother brought her son to the hospital to die.

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision : 

Involving an Ethicist to Assist a Team in Anticipation of, During, or after an End-of-Life Decision Autonomy Beneficence Non-maleficence What positive aspects of this case can be applied to future clinical situations? Was the parents' request within a morally permissible range of options? How can conflicts between parents and health care professionals best be resolved? What measures can be taken to best support parents and professionals when conflicts arise? Do you need an ethicist for this case?

Evil Morphine : 

Evil Morphine Return to Home Page

Neonatal Advanced Care : 

Neonatal Advanced Care

Neonatal Advanced Care : 

Neonatal Advanced Care

Neonatal Advanced Care : 

Neonatal Advanced Care

Neonatal Advanced Care : 

Neonatal Advanced Care

Creation of a Neonatal End-of-Life Palliative Care Protocol : 

Creation of a Neonatal End-of-Life Palliative Care Protocol

Creation of a Neonatal End-of-Life Palliative Care Protocol : 

Creation of a Neonatal End-of-Life Palliative Care Protocol

Creation of a Neonatal End-of-Life Palliative Care Protocol : 

Creation of a Neonatal End-of-Life Palliative Care Protocol

Creation of a Neonatal End-of-Life Palliative Care Protocol : 

Creation of a Neonatal End-of-Life Palliative Care Protocol PLANNING FOR A PALLIATIVE CARE ENVIRONMENT PRENATAL DISCUSSION OF PALLIATIVE CARE FAMILY CONSIDERATIONS TRANSPORT ISSUES WHICH NEWBORNS SHOULD RECEIVE PALLIATIVE CARE? INTRODUCING THE PALLIATIVE CARE MODEL TO PARENTS OPTIMAL ENVIRONMENT FOR NEONATAL DEATH LOCATION FOR PROVISION OF PALLIATIVE CARE VENTILATOR REMOVAL, PAIN AND SYMPTOM MANAGEMENT CULTURAL SENSITIVITY FAMILY FOLLOW-UP CARE ONGOING STAFF SUPPORT

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Jewell Falls, Portland Audubon Sanctuary