Palliative Care for the Medically Complex Child
Supplementary Cases Guide
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Below is a slide-by-slide guide to three supplementary cases with suggested discussion points. The slides are equipped with
animations that can be triggered when you see the word [click] in brackets.
Before facilitating the cases, we recommend you thoroughly review these slides and notes, and practice the presentation
with the animation.
Key teaching points are highlighted in yellow.
Suggestions for discussion during the presentation are provided and are shaded in pink.
SLIDE
DISCUSSION POINTS/NOTES
Case 1:
The patient is a 12 year old girl with a history of brain injury from non-accidental trauma.
She is severely developmentally delayed, has spastic cerebral palsy, seizures and is fed solely
through a gastrostomy tube. She had a tracheostomy placed as an infant. She was weaned
off the ventilator, however continues to need the tracheostomy for airway protection given
her impaired neurological status.
She is cared for by her grandmother who is her legal guardian. She went to school until a
year ago when she had a difficult time recovering from an orthopedic surgery on her legs,
developed an ileus, and took a long time to recover and tolerate feeds again. Since then, the
grandmother notes that she frequently has abdominal distension, requires frequent enemas
for stooling, and is often uncomfortable with feeding. She has severe scoliosis and the
orthopedic surgeons and pulmonologists have been evaluating her for surgery within the
next few months. This concerns the grandmother given her recent post-operative course.
[click] The multi-disciplinary palliative care team is consulted when she is admitted to the
hospital for pneumonia and again develops an ileus and cannot feed.
Suggestions for Discussion: What else would you want to know about the patient, i.e.; her
quality of life? Other symptoms? Family support system? How was the previous decision for
surgery made and how is it reflected on now? Did anyone discuss goals of care or consider
introduction of palliative care during that difficult hospitalization?
Due to the severe ileus and difficulty feeding her feeds are held and a peripherally inserted
central catheter is placed to give parenteral nutrition. Attempts at initiating feeds cause
abdominal distension, pain and retching. Her seizure and spasticity medications have to be
changed frequently due to her inability to tolerate enteral medications, making management
more difficult and more invasive, and making seizures and spasticity more difficult to control.
After a couple of weeks, she develops an infection in her central line which needs to be
removed. A peripheral IV is placed after several attempts.
At a family meeting the grandmother says “I just don’t think I can do this anymore, she is in
so much pain when we feed her, and her life over the past year just hasn’t been the same.
She used to at least enjoy going to school and be comfortable most of the time. Now she is
uncomfortable so much and spends too much time in the hospital. This isn’t the life I want
for her”.
Suggestion for Discussion: Has everything possible been done to make her more
comfortable?
The medical team evaluates the case to ensure that everything has been done to try to feed
successfully. Different formulas have been tried, trans-pyloric feeding has been attempted
while venting the gastrostomy tube without much difference, and medications for reflux and
constipation have been maximized. Medications contributing to constipation/ileus were
minimized, however could not be eliminated due to need to control spasticity and seizures.
Radiologic evaluation revealed no obstruction or anatomic abnormalities. The team had
tried gabapentin for visceral hyperalgesia and maximized the dose. Despite all these
interventions, she was still unable to feed without abdominal pain and distress.
During a meeting with the grandmother and extended family, options are discussed. The
risks and benefits of continued parenteral nutrition are reviewed, including continued risk of
infection, risk of anesthesia to replace the central line, risk of liver disease, and need for
frequent lab monitoring. Also, the team acknowledges they cannot predict when or if she
would be able to tolerate feeds again, and although a very slow introduction could be
considered, so far all attempts to feed have been painful and distressing for the patient and
family. After consideration of these options, the grandmother says, “I just want to stop
everything and make her comfortable”.
Suggestions for Discussion: The grandmother expresses her wish to withdraw all nutrition
and hydration. Is this ethically permissible? What arguments for/against this approach can
you imagine would come up on the medical team? Are there other options you could
consider?
Review from presentation:
No ethical difference is recognized between withholding an intervention and withdrawing it
once it has been initiated. In fact, often the concept of a “time-limited trial” is applied to
determine if an intervention will be effective before deciding not to continue with it.
This does not mean they will be viewed equally by families (or staff), and often withdrawing
an existing intervention is much more difficult for the family (or staff) than to withhold
initially.
Review from presentation:
In the child with a life-limiting illness, artificial nutrition or hydration becomes a medical
intervention, distinct from feeding the hungry or thirsty child. In the majority of patients,
artificial nutrition or hydration is of clear benefit, but in some cases it may actually cause
harm and prolong suffering.
Enteral feeding can cause pain, and increase risk for aspiration.
Intravenous hydration can exacerbate pulmonary and cerebral edema.
[click] In addition, prolonged parenteral nutrition can carry significant side effects including
electrolyte abnormalities, liver disease, and risk of infection.
The grandmother decides to allow natural death. No further attempts at feeding are made
and IV nutrition is not restarted. She continues to get some hydration from IV medications
for seizures, and to control spasticity and pain. She is admitted to inpatient hospice, kept
comfortable, and dies several days later.
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Neurologically impaired children are at risk for dysmotility and gastrointestinal
dysfunction that can make feeding challenging and often cause pain and suffering
Withdrawal of Artificial Nutrition and Hydration (ANH) is ethically permissible in
certain cases
ANH can have harmful side effects and benefits don’t always outweigh risks
References:
Artificial nutrition and hydration Narrative and Statement. National Hospice & Palliative Care
Organization, 2010. Accessed online February 19.2103 at:
http://www.nhpco.org/i4a/pages/index.cfm?pageid=4673
Diekema DS; Botkin JF. Forgoing Medically Provided Nutrition and Hydration in Children.
American Academy of Pediatrics. Committee on Bioethics. Pediatrics. 2009; 124(2): 813-22.
Klick JC, Hauer J. Pediatric Palliative Care. Curr Probl Pediatr Adolesc Health Care. 2010; 40:
120-151.
Case 2:
The patient is a 16 month old boy with history of birth asphyxia and has spastic cerebral
palsy, developmental delay, and is fed through a gastrostomy tube.
[click] Palliative care was introduced and hospice suggested after birth given a poor
neurological prognosis, but the parents felt his prognosis was unclear and wanted all
measures taken to sustain life. He is followed closely by his primary pediatrician with whom
the family has a very close relationship. They live over two hours from the nearest tertiary
care center and have two other young children, so follow-up with specialists has been
difficult. They did not maintain contact with the palliative care team due to their belief that
this service was only for kids who were about to die.
Suggestions for Discussion: What are some common misperceptions of “palliative care”?
How could the pediatrician help to explain the role of the palliative care team in the child’s
care? How could a team support this patient even if the parents do not want any limitations
of care at this time?
Since about six months of age the parents have recognized how severely developmentally
impaired the child is (compared to their two healthy children) and have had concerns about
uncomfortable symptoms like constipation and spasticity. The pediatrician has seen him
multiple times for vomiting and resulting poor weight gain. During these visits, they have
expressed to their pediatrician their wish to focus on keeping the child comfortable. They
have decided to avoid any surgeries or procedures, and do not want CPR in the event of
cardiac arrest.
[click} They would like for their son to live comfortably as long as possible and they continue
to get much joy from having him in the family.
Suggestions for Discussion: What complications can be foreseen from the child’s symptoms
if not better controlled? What interventions might be curative, palliative or both?
Medications for reflux and a bowel regimen are tried with some improvement. However, he
is still vomiting a few times a day and not gaining weight. He intermittently has breathing
difficulty and is now on a pulmonary toilet regimen. In addition, he vomits his baclofen and
so his spasticity is poorly controlled.
[click] He develops an aspiration pneumonia from vomiting and is admitted for two days to a
local community hospital for oxygen and antibiotics.
The patient can smile, turn to sound or touch, make some sounds in response to parents,
and recognize his parents. They used to get more joy from these interactions but now feel
he is always uncomfortable.
The parents are very worried about his quality of life. However, they are afraid to follow-up
with the specialists at the tertiary care hospital because someone once told them he would
probably need a surgery to “close his stomach” (a Nissen fundoplication) and they do not
want that. The parents recall the palliative care consult after birth and wonder if it is the
right time to consider hospice and comfort care only.
Review from presentation: In the medically complex child, most decisions will fall in a grey
zone, where the benefit is marginal or unclear. In these cases, the family’s wishes should be
honored.
Suggestions for Discussion: Are there other options to consider? How can the primary care
doctor advocate for the patient? What are some roles of the primary doctor vs. the palliative
care specialty team in this case?
Due to the parents’ transportation difficulties and reluctance to seek specialist care, the
primary physician consults with gastroenterology team by telephone who suggests a trial of
trans-pyloric feeding with a gastro-jejunal tube that can be placed at the hospital without
significant risk or pain. The parents agree to do this, and following the procedure, he is able
to tolerate feeds, gain weight, has minimal vomiting, and is able to keep down medications
so his spasticity is better controlled. During his post-operative stay, medical management of
GERD, constipation and secretions is also maximized. The parents reconnect with the
palliative care team and specialists and the parents’ goals of care are communicated and
understood.
Review from presentation:
Pain is only one symptom in the neurologically impaired child that affects comfort.
[click] Controlling all of these symptoms is needed to ensure the comfort of the child.
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It is often difficult for parents to accept poor neurological prognosis at birth. Goals
of care may change over time.
Misperceptions of palliative care are common. Education is needed to ensure
families can benefit from available services.
Decision-making: When benefit/burden of procedures is unclear (such as surgeries)
family wishes should be honored.
Always ensure that all measures have been taken to make the patient comfortable
and relieve suffering.
References:
Assessing Benefits and Burdens of Life-Sustaining Treatments. International Pediatric
Palliative Care Curriculum. http://ippcweb.org/mod3_act2.asp. Accessed online Feb 9, 2013
Honoring Parental Values When Benefits Are Marginal or Uncertain. International Pediatric
Palliative Care Curriculum. http://ippcweb.org/mod3_act3.asp. Accessed online Feb 19, 2013
Klick JC, Hauer J. Pediatric Palliative Care. Curr Probl Pediatr Adolesc Health Care. 2010; 40:
120-151.
Case 3:
The patient is a 9 year old ex-premature infant with h/o grade 4 IVH, severe developmental
delay, spasticity, seizures, and severe chronic lung disease. She is currently fed through a
gastro-jejunal tube as her Nissen fundoplication failed and she had vomiting and aspiration
with gastrostomy feeds. Worsening scoliosis has also caused restrictive lung disease. She
has had multiple orthopedic procedures in the past and the parents are reluctant to move
forward with the scoliosis surgery due to the risks involved. They have been worried about
increasing pain/distress, difficulty positioning, and more time in the hospital due to recurrent
pneumonias and surgeries.
[click] She is admitted for pneumonia and is unable to be extubated so a tracheostomy is
placed. She is discharged home on oxygen via trach collar. She previously had eight hours a
day of private duty nursing, and this is increased at least temporarily to 16 hours a day due to
the new tracheostomy.
Subsequently, she is re-admitted for pneumonia and respiratory failure. She requires
mechanical ventilation, and then is able to wean back to trach collar after multiple attempts.
However, after three days a decompensation leads to transfer back to the ICU for continued
positive pressure ventilation.
Despite maximizing treatment of her spasticity, seizures, secretions and pulmonary regimen,
the scoliosis and contractures still cause pain. She has had multiple wounds due to skin
breakdown, and she has had increasing hospital admissions. Her family feels her quality of
life has deteriorated significantly. They do not want to continue escalating respiratory
support, and do not want her to “live on a breathing machine” as they feel it is just
prolonging her suffering. They hope they can avoid being admitted so frequently and keep
her comfortable at home.
Suggestions for Discussion: What are some considerations for discharge? What options can
be presented to the family?
The palliative care team is consulted to assist with disposition and coordination of care. The
option of inpatient hospice is presented, however there are limited facilities close to their
home and they have other children to care for. Also, the life expectancy cannot be
accurately determined so they don’t know how long she would be there. Discharge with
hospice support is then presented, and advantages to being at home (including increased
control and more space for family) are reviewed. However the parents say they knew a
family who brought their child home many years ago with hospice but lost their private duty
nursing. Since the father works and they have other children to care for, they are very
worried about losing the shift nursing because of the care needed including for the
tracheostomy.
Suggestions for Discussion: How have options for discharge planning been impacted by the
Concurrent Care Act? What is the ideal discharge situation for this child? What problems or
barriers might still exist?
The palliative care team informs the family of the Concurrent Care legislation and the ability
for Medicaid to cover both the shift nursing and hospice services.
Review from presentation:
With the passage of the Affordable Care Act in 2010, a new provision entitled Concurrent
Care for Children was enacted, requiring Medicaid to pay for both curative and hospice
services.
While this legislation helped overcome a significant barrier to providing hospice care,
limitations still remain. Unless amended at the state level, children still must be deemed to
have a six month life expectancy. In addition, the legislation did not expand available
hospice services, nor does it regulate the services provided by private payers.
The child is discharged home with continued nursing, as well as hospice services that help
with symptom control, comfort and emotional support for the family. The parents and team
complete an out-of-hospital durable Do Not Resuscitate order for the patient. The nurses
who have cared for the child at home for many years are educated on the current care plan
and decisions to limit interventions. The child dies at home peacefully surrounded by family.
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Many children ultimately die in a hospital setting. Discharge home with hospice
is an alternative that can be considered.
The Concurrent Care Act requires that Medicaid support both hospice care and
routine or curative care, including home nursing.
Barriers continue to exist to providing pediatric hospice care and to
implementation of Concurrent Care in practice.
References:
Moody K; Siegel L; Scharbach K; Cunningham L; Cantor M. Pediatric Palliative Care. Primary
Care Clin. 2011; 3: 327-361.
National Hospice and Palliative Care Organization. Concurrent Care for Children
Requirement: Implementation Toolkit. Accessed online Feb 19. 2013.at
http://www.nhpco.org/resources/pediatric-hospice-and-palliative-care