By: Linda Dayton-Kehoe, COTA/L, Kellie Drake-Lightfoot, PT, MPT, Beatrica Kovacova, LPTA, and Colleen Manion, MS, OTR/L

1. What is pediatric palliative care?

Our pediatric palliative care team is an interdisciplinary group of medical professionals that provide emotional, spiritual, physical, and psychosocial care to help manage chronic and critical conditions that cause distress and distraction from a child’s enjoyment of life. Treatment includes care for patients and support for their families from the time of initial diagnosis of life-threatening or complex/chronic illness through death and bereavement, if that occurs.

2. Why are therapists involved with palliative care patients?

Physical, occupational and speech therapists are important members of the palliative care team. We encounter this patient population in the acute care setting of the hospital and/or the outpatient clinics in which we work. Our goals are to help improve quality of life, maintain or improve function, restore independence with activities of daily living, manage pain, and provide motivation and opportunities for leisure activities even in these difficult situations.

3. What types of treatments do therapists provide to patients on the palliative care service?
   • Therapeutic exercise is used to improve endurance, strength, and flexibility so that patients can perform functional activities of daily living.
   • Therapeutic activities are used to include training for functional mobility, transfers, ambulation, and age-appropriate functional skills.
   • Passive and active assisted range of motion and positioning programs are provided for patients who are unable to complete these tasks independently. It is important to help keep joints moving so the joint stays healthy and contractures do not develop. We also help monitor and maintain skin integrity in more medically fragile patients.
   • Therapists assist with pain control through therapeutic exercise, positioning, modalities, massage, and education on compensatory and relaxation techniques.
   • Splinting is provided to protect joints when patients are unable to move or position them effectively on their own. Splinting can also help improve function by helping a patient hold a spoon or a toothbrush.
   • Therapists assess for the need for adaptive equipment. We then provide the adaptive equipment and train patients and families on its use.
   • Therapists provide instruction on compensatory techniques, relaxation techniques, and breathing techniques. This can be very helpful for patients who are experiencing high stress, high anxiety situations. Compensatory techniques may allow a child to return to an activity he/she previously enjoyed despite physical limitations.
   • We provide assessment and treatment of communication deficits or feeding issues.
   • All treatments are provided through age-appropriate activities that are focused on facilitating patient enjoyment in participation. In this way, we are able to help with the psychological well being and motivation of the child and family.
   • Therapists educate families regarding all of the above treatments that we provide. We make sure they are comfortable carrying out a home exercise program and make referrals for continued therapy services as needed.
4. Do you feel it is therapeutic for therapy services to be involved with an actively dying patient? Why?

We respect the wishes of our patients and their families. We feel our services are greatly beneficial to all patients, including an actively dying patient. If the family is open to the idea, we strongly recommend our intervention techniques. We are able to provide comfort, pain control alternatives, return of some level of independence, and leisure activities that are appropriate for the patient’s ability level and age. We also feel that sometimes these types of needs for an actively dying patient can go unrecognized by families and other medical care team members. We feel therapists are uniquely qualified to assess provide treatments specifically for the individual that can help improve the patient’s quality of life.

5. What kind of patients are appropriate to refer to palliative care? Who can refer a patient to palliative care?

Our palliative care team receives consults for any child with a complex or chronic illness who is in a need of spiritual, emotional, physical, or psychosocial support. In our hospital, the child does not have to be a current inpatient of our hospital in order to be referred to palliative care. Palliative care is provided in any setting – home, outpatient clinic, long-term facility, or hospital. Our palliative care team provides around-the-clock consultations in the hospital or at home.
Anyone involved in the patient’s care can refer the child to our palliative care team. This would include any health care provider or the parent or a care giver.

6. What kind of support do you expect palliative care to provide to
   • Families?
     • Provision of the best coordination of care
     • Advocacy for the child and family
     • Recommendations of appropriate intervention
     • Spiritual and emotional support
     • Empowerment
     • Home care services
     • Guidance and assistance with obtaining funding and equipment
     • Family needs (transportation, financial support resources)
     • Nutritional support
     • Bereavement support services
     • Assistance with coordination and reintegration to school as appropriate
     • Our palliative care team also helps provide memory-making for their patients
   • Staff?
     • Help with funding of equipment
     • Provide information on prognosis
     • Inform staff of specific family situations
     • Education on how to talk to families about their child’s condition
     • Stress management advice
     • Helping to keep open communication between staff
     • Inform staff about recently bereaved patients and information regarding calling hours and funerals
     • Emotional and spiritual support

This Months Featured Organization: The Haslinger Pediatric Palliative Care Center at Akron Children’s Hospital.

We thank our authors and The Haslinger Pediatric Palliative Care Center at Akron Children’s Hospital for providing us with this Q&A article for our Monthly newsletter.
Kellie Lightfoot, PT, MPT is a pediatric physical therapist working at Akron Children’s Hospital in Akron, Ohio. She graduated with a Bachelor’s degree in Applied Health Sciences from Bowling Green State University and received her Master’s degree in Physical Therapy from the Medical University of Ohio.
Beatrica Kovacova LPTA, is a pediatric Physical Therapist Assistant working at Akron Children’s Hospital in Akron Ohio. She graduated in 1992 from the School of Physical Therapy in Trencin, Slovak Republic, earning a Physical Therapist degree. In 1999 she graduated from Stark State Collage of Technology in Canton, Ohio with a Physical Therapist Assistant degree.
Colleen Manion MS, OTR/L is a pediatric occupational therapist working at Akron Children’s Hospital in Akron, Ohio. She graduated from Duquesne University in Pittsburgh, Pennsylvania, with a Master’s of Science in Occupational Therapy in 2006.
Linda Dayton-Kehoe, COTA/L a pediatric occupational therapy assistant working at Akron Children’s Hospital. Graduated 1995 from Kent State University in Kent, Ohio.
All four therapists are members of the Palliative Care team at Akron Children’s Hospital and work together to serve the needs of the palliative care patients.
The Haslinger Pediatric Palliative Care team at Akron Children’s Hospital focuses on children, prenatal to young adult, with complex, chronic or serious conditions and their families, enhancing quality of life in partnership with cure-directed care. The palliative care team works in collaboration with the patient’s other health care providers and specialists, helps to provide seamless care coordination and communication, and aids in making informed choices about difficult medical decisions. Palliative care patients receive comprehensive, multidisciplinary care to control pain and other symptoms. Patients receive support for emotional, psychological, practical, spiritual, educational and developmental issues which may contribute to suffering or interfere with healing. Care is customized for each patient and family, by allowing them to choose from a variety of available services, according to their needs. When a child faces a chronic condition or a serious illness, families often feel as if life has become a roller coaster ride. Palliative care is there to provide support along the journey, no matter what the outcome may be.
Akron Children’s Hospital is a not-for-profit organization established in 1890, and is the largest pediatric health care provider in northeast Ohio. With a staff of more than 4,000, we care for nearly 600,000 patients each year at our two freestanding hospitals and offer services to families throughout the region at more than 80 locations. Our pediatric specialists care for children of all ages, treating a wide range of conditions from routine primary care to the most complicated injuries and illnesses.