The Hospice Clinician Blog

Next week is NHPCO's Annual Clinical Team Conference and Pediatric Intensive. This year's Conference is being held at the Disney World Dolphin Resort in Orlando, Florida, and the Outcome Resources team looks forward to seeing you there! If you have the chance to attend this year, stop by Booth #405 in the Exhibit Hall. We will have a special treat for the first 100 attendees that come by at the Opening Reception on November 5th from 5:00pm - 7:00pm. Also, be sure to enter to win our contests and pick up information to share with your team. If you are not attending, request your Hospice Pharmacy Information Kit or a Free Hospice Pharmacy Consultation to learn more.

We have special resources for hospices with pediatric palliative care programs such as education, and pharmacist support. So whether you currently have a program or are interested in better serving the pediatric population in your community, Outcome Resources can support your needs. Download our handout "Pediatric Palliative Care: A Special Kind of Service" below.

Take a look at some of the benefits available to your hospice through a partnership with Outcome Resources:

• With one contract, your hospice receives one low discounted rate on ALL medications.
• Your patients have their choice of pharmacies (including mail order options) while your hospice receives one clear and concise invoice.
• Unlimited Access to a team of experienced PharmDs for patient consults, drug information, and education programs.
• Easier management of hospice patients in skilled facilities since all closed-door pharmacies are included on your invoice.
• With custom-tailored plan design and formulary control, you are in control of the medications that are dispensed and paid for by hospice.
• Your pharmacies are paid electronically every 15 days and processing claims through our program means fast and easy dispensing along with reduced chance for error.
• Detailed reports, invoices, and patient medication information means you always have management tools at your fingertips.
• Dedicated lines of communication with your Account Claims Manager and Pharmacists to eliminate time-wasting transfers and phone trees.
• Partnership with a company dedicated solely to hospices - we understand your specific complex requirements.

Join us at the Conference, on Facebook, Twitter, or Contact Us directly, and we look forward to speaking with you soon!

Outcome Resources has had the privilege of partnering with Dianne Gray of Hospice and Healthcare Communications in developing an educational presentation entitled “Pediatric Palliative Care: Messages for Your Families.” Dianne Gray is an incredible woman, mother and pediatric palliative care advocate who founded Hospice and Healthcare Communications after experiencing pediatric palliative care through her son, who was diagnosed with a rare neurodegenerative disorder. With Dianne’s first-hand experience and insight, we’ve developed this presentation to help palliative care and hospice providers understand what matters most to pediatric palliative care patients and their families, and to effectively and compassionately address their concerns. This 22-minute presentation is narrated by Dianne and can be downloaded from the “Members” section of our website under “Educational Resources – WebEx”. You will need your members-only log-in credentials to access this portion of the website.

We hope you will find this presentation inspiring and thought-provoking, and will enjoy sharing it with your colleagues and interdisciplinary teams. While you’re on the website, take a moment to browse through some of the other Educational Programs available to Outcome Resources clients, many of which have accompanying continuing education (CE) credit. For our hospice partners caring for pediatric patients and their families, remember that our clinical team stands ready to provide support. We are available 24 hours a day and can help you with opioid dosing, pain and other symptom management, or any other questions you may have.

In addition, take a moment to download the handout "Pediatric Palliative Care: A Special Kind of Service" below.

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The FDA is notifying healthcare professionals that Revatio (sildenafil) should not be prescribed to children (ages 1 through 17) for pulmonary arterial hypertension (PAH).This recommendation against use is based on a recent long-term clinical pediatric trial showing that: (1) children taking a high dose of Revatio had a higher risk of death than children taking a low dose and (2) the low doses of Revatio are not effective in improving exercise ability (see “Data Summary” below for details). Treatment of PAH in children with this drug is an off-label use and a new warning stating the use of Revatio is not recommended in pediatric patients has been added to the Revatio labeling.

Revatio is a phosphodiesterase-5 inhibitor used to treat PAH by relaxing the blood vessels in the lungs to reduce blood pressure. Revatio is approved to improve exercise ability and delay clinical worsening of PAH in adult patients, with a maximum recommended dose of 20 mg three times daily. Revatio has never been approved for the treatment of PAH in children, but has been used off-label for this indication. Sildenafil, the active ingredient in Revatio, is also marketed in the prescription product Viagra, a drug for adult males with erectile dysfunction. At this time, the FDA does not believe that this safety concern applies to the use of Viagra, given the differences in patient population and the different recommended dosing regimens.

Patients and caregivers are advised to not change the Revatio dose or stop taking Revatio without talking to a health care professional. Healthcare professionals are reminded that use of this Revatio, particularly chronic use, in children is an off-label indication, not approved by FDA, and is not recommended. Patients and healthcare professionals are encouraged to report any side effects experienced to the FDA MedWatch program.

Data Summary

In a randomized, double-blind, multi-center, placebo-controlled, parallel-group, dose-ranging clinical trial, 234 patients with PAH, 1 to 17 years of age, were randomized to low-, medium-, or high-dose Revatio (sildenafil; administered three times per day) or placebo for 16 weeks of treatment. Most patients had mild to moderate symptoms at baseline. Actual doses administered were dependent on body weight.

The primary objective of the trial was to assess the effect of Revatio on exercise capacity as measured by the Cardiopulmonary Exercise Test (CPET) in patients who were developmentally able to perform the test (n = 115). Administration of Revatio did not result in a statistically significant improvement in exercise capacity in those patients.

After completing the 16-week controlled clinical trial, patients randomized to Revatio remained on the same dose of Revatio; patients originally randomized to placebo were re-randomized to low-, medium-, or high-dose Revatio. After all patients completed 16 weeks of follow-up in the controlled clinical trial, the blind was broken and doses were adjusted as clinically indicated. Patients were followed for a mean of 3 years (range 0 to 7 years).

A direct dose-related effect on mortality was observed with the highest dose having the worst outcome. The hazard ratio for high dose compared to low dose was 3.5 (p=0.015). Deaths were first observed after about 1 year, then occurred at fairly constant rates within each group.  Causes of death were typical of patients with pulmonary hypertension.

In light of these risks, the use of Revatio is not recommended in children. A new warning against the use of Revatio in pediatric patients is being added to the Revatio drug label.

References
Barst RJ, Ivy DD, Gaitan G, et al. A randomized, double-blind, placebo-controlled, dose-ranging study of oral sildenafil citrate in treatment-naïve children with pulmonary arterial hypertension. Circulation 2012;125:324-334.

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A huge challenge facing parents, caregivers and healthcare professionals who take care of ill children is getting those children to take their medicine. When children won’t take their medicine, optimal care is obviously challenged, whether in a chronically ill child who must take routine medicine to control their disease or in an acutely ill child who must take an as-needed medication to control symptoms. In this article, I’d like to present some strategies, which can be employed by anyone caring for an ill child, for getting kids to take medications.

Dealing with Bad Flavor

Medicines, especially liquids, are notorious for tasting bad. When flavor is an issue, try the following:

• Use the cheek pocket. To avoid the tongue as much as possible, place the medicine between the cheek and lower jaw, toward the back of the mouth. From there, liquid medicine will glide straight down the throat, avoiding the taste buds.
• Offer a “spoonful of sugar”. Combine the medicine with a little sweet-tasting food or drink to mask the bitterness, or offer a “chaser”. Always check with a pharmacist before mixing medicines with food or drink to make sure it is OK, and make sure the child is able to consume the entire food or drink so he or she gets the full dose.
• Ask about FlavoRx. FlavoRx is an FDA-approved medication flavoring system available at many pharmacies, including all Walgreens, Rite-Aid, CVS, Target and Walmart pharmacies. The child’s medicine can be customized with one of 18 available flavors. They also offer “Pill Glide”, which is a flavored spray designed to make pills easier to swallow.
• Rerigerate. Liquid meds are usually more palatable when served cold. Check with the pharmacist first.
• Ask about alternatives. Sometimes another delivery device, formulation, route of administration or brand will be more acceptable to the child.
• Try a pacifier medicine dispenser. This nifty device, which retails for about $5, includes a pacifier equipped with a medication dispensing reservoir inside. The medication is slowly dispensed as the infant or child sucks on the pacifier.

Strategies for Toddlers and Older Kids

Like most things with toddlers and older kids, medicine-taking can quickly become a turf war, resulting in a lot of stress and fighting. To avoid getting to that point, try these strategies:

• Make medicine more enticing and fun. Add food coloring, decorate their medication cup, or have a medication “tea party.”
• Create a routine and reward successes. Toddlers and young children thrive on routine. Create a routine surrounding medications and a designated spot in the house. Use the reward system to recognize each success.
• Explain yourself. Explain how medicine helps kids get well, in terms they will understand, such as "This medicine will help you feel better so you can go back to the playground.“ or "You didn't wake up at all last night. That's because the medicine took your pain away."
• Offer choices whenever you can. Taking medicine is not optional, but some aspects of taking medication can be. For example, ask a child “Would you like apple juice or orange juice with your medicine?” Giving them a choice in any aspect you can will help them feel that they have some control in the process.
• Avoid physical struggles. Sometimes, you may have no choice, but try to avoid physical struggles at all costs. If medicine-taking is associated with a negative experience in the child’s mind, that will only make it that much more difficult the next time around.
• Watch your own demeanor. Children reflect the attitude of the adults around them. So if you treat medicine-taking as a horrible thing, changes are the child will too.

With all children, anticipate and prevent side effects as much as possible. Children make strong and fast associations, so even one negative experience may create a difficult situation where the child no longer wants to take the medicine.

What strategies have you found useful in getting children to take their medicine?

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Currently, pediatric acetaminophen is available in two liquid concentrations: 160 mg per 5 mL (usually labeled as “children’s”) and 160 mg per 1.6 mL (usually labeled as “infants’”, as it is given in drop form).  The availability of two concentrations has resulted in confusion and dosing errors, and has been a long-standing source of concern.

In May of this year, the Consumer Healthcare Products Association (CHPA) announced an industry-wide transition to a single pediatric acetaminophen concentration. Companies are voluntarily shifting to the 160 mg per 5 mL concentration. Eventually, the more concentrated infants’ drops will no longer be available. This shift is consistent with an FDA Advisory Committee recommendation made in 2009.

Pediatric acetaminophen dosing remains 10-15 mg/kg/dose.

Dosing chart for liquid pediatric acetaminophen products 

Outcome Resources is a pharmacy partner exclusively for hospices with experienced pediatric palliative care pharmacists on staff and available for consultation to our hospice clients. If you are interested in learning more about how a partnership with Outcome Resources can benefit your hospice, including your pediatric palliative care program, Contact Us today.

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This final article in our pediatric series will focus on the management of some of the most common non-pain symptoms encountered in pediatric palliative care. Research is notoriously lacking in this area, so much of what is done in pediatric palliative care is derived from the general pediatric population, from adult palliative care, or simply from clinical experience.

Specific symptom complexes that are addressed include: anxiety & depression, agitation, insomnia, anorexia-cachexia, nausea-vomiting, constipation, and dyspnea. Specific medication strategies will be presented for managing each of these troubling symptoms in pediatric hospice patients. 

Download the complete copy of Part 3 of our Pediatric Palliative Care Series: Pediatric Palliative Symptom Management. This article includes common non-pain symptoms such as depression, agitation, and dyspnea.

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The July issue of The Clinician, our quarterly clinical newsletter, will feature the final article in our three-part series on pediatric palliative care. In the upcoming article, Julia Harder, PharmD, will discuss the management of some of the most common non-pain symptoms encountered in pediatric palliative care. Specific symptom complexes that will be addressed include: anxiety & depression, agitation, insomnia, anorexia-cachexia, nausea-vomiting, constipation, and dyspnea. Specific medication strategies will be presented for managing each of these troubling symptoms in pediatric hospice patients. All clients of Outcome Resources receive complimentary copies of The Clinician each quarter. Previous issues of The Clinician can be obtained by contacting Jim Joyner, PharmD, at jjoyner@outcomeresources.com Be sure to check the Blog for the upcoming Part 3 in the series.

Dowload Part 1 of Pediatric Palliative Care Series: Current Concepts in Drug Therapy

Dowload Part 2 of Pediatric Palliative Care Series: Pain Management

Download Part 3 of Pediatric Palliative Care Series: Palliative Symptom Management

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In pediatric palliative care, the first rule of pain management is to always tailor assessment and treatment to the unique needs of the child and his or her family. Many factors will shape a child's pain, including developmental level, emotional and cognitive state, personality traits, physical condition, and past experiences. The meaning of the pain for the child; the child's fears and concerns about illness and death; issues, attitudes, and reactions of the family; cultural background; and the environment are all elements in a child's perception of pain. Getting to know the child and having knowledge of developmental norms and behavioral competencies are important in the assessment and management of pain.

Open communication about pain among the child, the family, and the health care team is critical to successful pain assessment and management. To encourage open communication, determine the language the child uses for pain (e.g., hurt, owie, booboo) and how and to whom the child communicates pain. Often, parents/caregivers are the primary source of information about how the child exhibits and responds to pain and should be encouraged to be active participants in both assessment and management. Parents/caregivers can also contribute important information including prior painful events, previously used methods for pain control and preferences for assessing and treating pain.

Download the complete copy of Part 2 of our Pediatric Palliative Care Series, Pain Management in Pediatric Palliative Care. This article includes Pain Assessment Techniques, Opioids, Side Effects, and Dosing.

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While the elderly constitute the vast majority of patients requiring hospice and palliative care, approximately 50,000 infants, children and adolescents die annually in the United States. Of these, epidemiologic studies estimate that 15,000 might benefit from palliative care. In addition, the National Hospice and Palliative Care Organization has estimated that palliative care would be an appropriate model of care for approximately 1.5 to 2 million children in the United States living with serious medical conditions. As the medical community has become more aware of this need, pediatric palliative care has received increasing attention as an emerging sub-specialty of palliative care focusing on achieving the best possible quality of life for children with life-threatening conditions and their families.

This article is the first in a series of three articles focusing on pediatric palliative care, and will introduce the topic by comparing palliative care of children to that of adults, reviewing pediatric pharmacokinetics, and giving general guidelines for pediatric medication administration. Subsequent articles will focus in more detail on pain management and the management of other symptoms commonly experienced by children at the end of life.

Click Here to Download the full article Pediatric Palliative Care: Current Concepts in Drug Therapy

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