PEDIATRIC INTEGRATIVE MEDICINE AND PEDIATRIC PALLIATIVE CARE

Written By Ana Maria Verissimo

This article from Dr. Ana Maria Verissimo, MD, MA was published by the American Academy of Pediatrics in the Fall of 2023

I appreciate the opportunity to write a brief article on two topics quite important to me: Pediatric Integrative Medicine and Pediatric Palliative Care. These two disciplines have similar philosophies, both being grounded in the desire to decrease pain and suffering. They strive to promote healing of the mind, body, and spirit within context of the patient’s family, his or her wider support system, and the greater community. My hope is to highlight the ability of integrative medicine modalities to assist in the healing of palliative care patients and their families. I have focused on five integrative modalities. Of course there are others which could be offered within palliative care setting.

Palliative care is a philosophy, fostered within the hospice ideology, that aims to bridge potential gaps when treating seriously ill and dying patients. The goals of pediatric palliative care include improving quality of life, providing symptom relief, and ensuring communication and coordination of care within the context of the patient’s physical, emotional, developmental, social, and spiritual parameters.

Palliative care is an area that, in my view, is ideally suited to the application of Integrative Medicine techniques. The larger goal of Integrative Medicine is to pursue an equilibrium state of health, combining conventional medicine with complementary modalities that are safe and beneficial in promoting health and healing. It seeks to prevent disease, preserve health and vitality, manage symptoms, and establish inner peace. In addition, it strives to engage the patient and his or her support group as active partici- pants in the healing process. Palliative care and integrative medicine have similar philosophies focused on the importance of the mind, body, and spirit in unison with the patient’s support system and community.

It is important to understand the depth and breadth of pediatric palliative care in order to appreciate this complex subspecialty and the importance of an integrative approach to it. It is estimated that each year 50,000 children less than 20 years of age die in the United States, and that another 500,000 live with life threatening conditions.1 Palliative care consultations necessarily involve complex medical conditions. The results of a multicenter prospective study published in 2011 found that “The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8), respiratory (12.8%), and gastrointestinal (10.7%) Almost thirty-one per cent of patients were experiencing pain at initial interview.” 2

This same prospective study revealed the primary reasons for palliative care consultation included assistance with symptom management (58.1%), communication (48.5%), decision making (42.1%), coordination of care (35.3%), home transition (14.4%) and do-not-resuscitate orders (11.8%). In addition, the palliative team was asked to assist with parental and sibling bereavement support. The major symptoms described in this study population included cognitive impairment, speech impairment, non-restorative sleep, fatigue, somatic pain, and dyspnea. In addition, patients involved in the study expressed anxiety due to medical procedures and their “unknown” medical path.3 Other common symptom burdens in the population receiving palliative care include poor appetite, nausea, vomiting, and constipation.4

Integrative Medicine and palliative care share the same health and healing philosophy. The preceding survey of the landscape of pediatric palliative care offers the opportunity for providers to introduce a variety of integrative medicine therapies that may facilitate health and healing for patients and their families. This is particularly true in the context of symptom management. Certain integrative medicine modalities have a substantiated and promising basis for alleviating distressing symptoms such as pain, anxiety, nausea and poor sleep. Therefore, these therapies should be available in order to support patients and their families at this most delicate time. Some examples follow.

Pain is influenced by developmental stage, prior experiences with pain, anxiety, and other physical and emotional stressors, in addition to the patient’s innate temperament. Unfortunately, many studies indicate that there is sub-optimal pain relief during the last days of life. The need to improve pain relief and decrease distressing symptoms including nausea, poor sleep, dyspnea, and anxiety is far-reaching. The ability to achieve this goal affects not only the patient, but all those involved with the patient’s care. Pain assessment can be done using well established pain scales that are developmentally appropriate.

In addition to use of traditional medicine, it is well established that non pharmacologic supportive modalities play an integral role in pain management. These may include physical touch such as swaddling, rocking, massaging, and application of warm or cool compresses. The use of transdermal electrical nerve stimulation (TENS unit), physical and occupational therapy may also provide pain relief.5

Massage

To my knowledge there have been no pediatric massage therapy studies conducted for children in palliative care. However, we can postulate that this may be an effective treatment given pain reduction in adult studies.6 There are encouraging results in pain relief from massage therapy for children with a variety of chronic illnesses. However, the studies have been of small sample sizes, varying massage sessions, and individuality of treatment (i.e., frequency, depth of massage, duration of session, use of aromatherapy, type of massage and placement of massage). They have also been non-blinded studies with no control group. In addition, studies should include parentally delivered massage if possible. This may defray costs while also advancing the greater goal of enhanced healing for the patient and family member.7

In a 2007 analysis of several randomized, controlled trials of pediatric massage, Beider and Moyer found that massage therapy can be useful to decrease pain and anxiety in a palliative care setting. Massage therapy can also provide comfort through touch. The authors emphasize, however, that massage therapy at end-of-life needs to be gentle and mindfully focused on patient’s needs and those of the family.8

There certainly seems to be a place for pediatric massage in the palliative care treatment plan. The application of “gentle, compassionate touch” for end-of-life symptom management and healing seems to be indicated. Furthermore, empowering the patient’s family by learning and providing “touch therapy” to their loved one has immense value.

Clinical Aromatherapy

Clinical aromatherapy is the use of plant essential oils by qualified providers in order to improve healing and/or treat disease. The integration of aromatherapy in the hospital setting, either with massage or independent of massage, is considered safe. In addition there is growing literature, primarily in adults, suggesting its benefit in decreasing anxiety and pain, and promoting restorative sleep.9 There are limitations to the studies thus far, however, including small sample size and combination with massage treatments and variety of essential oil blends.

In a study of 288 adult cancer patients who were randomly assigned to aromatherapy massage and usual care, Wilkinson found a significant decrease in anxiety for up to two weeks after the intervention. However, no long term benefits were found.10

Mind-Body

Mind-body techniques such as diaphragmatic breathing, guided imagery, cognitive behavioral therapy, hypnosis, biofeedback, and distraction are well supported in the literature for pain relief. Furthermore, these techniques have virtually no side effects and promote self control with active participation in patients’ medical treatment plans. These are also therapies that families can implement for their child, thereby enabling members of the patient’s support system to become “active” participants in the healing process. Extensive randomized controlled trials: published by Uman et al found that hypnosis may alleviate pain and anxiety in needle related procedures.11 They also found that hypnosis reduces the incidence of chemotherapy induced nausea and vomiting.12

Art Therapy

Art Therapy is a complementary therapy that focuses on the premise that producing art can enhance the healing process. It is used to increase a patient’s self awareness, ability to cope with distressing symptoms, and ability to adapt to stressful situations. It provides a means whereby patients can increase self esteem and sense of control. The theory implies that through the process of making art, a person can express emotions that are difficult to articulate. Research in this field is growing, and suggests that art therapy may improve adverse symptoms seen in adult and pediatric oncology patients.13

For example, in a study involving 50 adult hospitalized cancer patients who participated in 1 hour of Art Therapy, ninety per cent of participants stated the art therapy session distracted them and allowed them to focus on something positive. The Edmonton Symptom Assessment Scale (ESAS) and the Spielberger State-Trait Anxiety Scales (STAI-S) were used prior and immediately after the art session. There were improved symptoms in 8 of 9 measured categories using ESAS scale and improvements in most areas of STAI-S. The researchers were surprised to find that there was an improvement in “tiredness” after the 1 hour art session. Most patients described feeling tired at baseline, but some patients reported feeling “energized” after the session. Despite several limitations, this study will hopefully encourage future research on the effects of art therapy for chronically ill patients.14

Music Therapy

There is a growing body of literature that advocates the benefit of music therapy within a children’s hospital. The available research suggests that music therapy may decrease anxiety and pain. In addition, it encourages the patient to express themselves through music (Lindenfelser). Musical expression can provide a therapeutic release of emotions within a supportive environment. Furthermore according to Aagaard children’s songs “were interplays of loveable acts between patients, parents and music therapist.” One can imagine how powerful this therapy can be to provide support in the grieving process.15

Summary

The objective of Integrative Medicine is for patients to develop coping skills and to regain a sense of control and empowerment in their treatment. In addition, it offers the opportunity for the patient’s family and support system to contribute to the care of their loved one. I believe Integrative Medicine favorably contributes to the healing process, particularly in the palliative care setting. It should therefore be discussed and encouraged at diagnosis.

Endnotes:

  1. Himmelstein,B,et al. Pediatric Palliative Care. NEJM. 2004;350:1752-1762. http://www.nejm.org/doi/full/10.1056/NEJMra030334

  2. Feudtner,C,et al. Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study. Pediatrics. 2011;127:1094-1101. http://

    pediatrics.aappublications.org/content/127/6/1094.long

  3. Ibid. http://pediatrics.aappublications.org/content/127/6/1094.long

  4. Shaw,T. Pediatric Palliative Pain and Symptom Management. Pediatric Annals. 2012:41:329-334. http://www.healio.com/pediatrics/

    journals/pedann

  5. Friedrichsdorf,S and Kang,T. The Management of Pain in Children with Life-Limiting Illnesses. Pediatric Clinics of North America. 2007;54:645-672, x. http://www.sciencedirect.com/science/article/pii/S0031395507001162

  6. Buttle, S et al. Commentary Massage for pain relief in pediatric palliative care: Potential benefits and challenges. Pediatric Pain Letter. 2011;13:24-29. http://childpain.org/ppl/issues/v13n3_2011/v13n3.shtml

  7. Ibid. http://childpain.org/ppl/issues/v13n3_2011/v13n3.shtml

  8. Beider S,et al. Pediatric Massage Therapy: an overview for clinicians. Pediatric Clinics of North America. 2007:54:1025-1041, xii-xiii.

    http://www.sciencedirect.com/science/article/pii/S0031395507001435

  9. Fitzgerald,M and Halcon,L. A Pediatric Perspective on Aromatherapy. Integrative Pediatrics by Culbert T and Olness K. (2010), New York:Oxford Univ. Press, 123-145. http://books.google.com/books? id=h2hCd4YZRtgC&pg=PA123&lpg=PA123&dq=A+Pediatric+Perspective+on+Aromatherapy.+Integrative+Pediatrics&source=bl&ots=a hL0lU61z1&sig=EU6q3iA_qVpHTPBN_Jyze7zcxjA&hl=en&sa=X&ei=af9nUu6OA4LdkQem3YDIBA&ved=0CDAQ6AEwAA#v=onepage& q=A%20Pediatric%20Perspective%20on%20Aromatherapy.%20Integrative%20Pediatrics&f=false

  10. Wilkinson,SMetal.Effectivenessofaromatherapymassageinthemanagementofanxietyanddepressioninpatientswithcancer:a multicenter randomized controlled trial. Journal of Clinical Oncology. 2007;25:532-539. http://jco.ascopubs.org/content/25/5/532.long

  11. Uman,Letal.Psychologicalinterventionsforneedlerelatedproceduralpainanddistressinchildrenandadolescents.CochraneData- base of Systemic Reviews. 2007:CD005179. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD005179.pub3/ abstract;jsessionid=3DA8A2E808ED1616F33A08C067E1969E.f03t04

  12. Ibid.http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD005179.pub3/ abstract;jsessionid=3DA8A2E808ED1616F33A08C067E1969E.f03t04

  13. Nainis,Netal.RelievingSymptomsinCancer:InnovativeUseofArtTherapy.JournalofPainandSymptomManagement.2006;31:162 -169. http://www.sciencedirect.com/science/article/pii/S0885392406000066

  14. Ibid.http://www.sciencedirect.com/science/article/pii/S0885392406000066

  15. Lindenfelser,K. Parents Voices Supporting Music Therapy within Pediatric Palliative Care. Voices: A World Forum for

    Music Therapy. 2005;5(3). https://voices.no/index.php/voices/issue/view/38

Ana Maria Verissimo
Next

POSTOPERATIVE PAIN OUTCOMES AFTER NUSS PROCEDURES