Pediatric E-Journal | Pediatric Hospice and Palliative Care in the Community ISSUE #69 | NOVEMBER 2022
Renee Bledsoe, LPN, CHPLN
Adaira Green, RN, BSN, CHPN
Julie Sayre, MA, LSW, LMFT
Social Work Manger
Pediatric patients with terminal illnesses often have a team of pediatric specialists who have seen this patient
from diagnosis through treatment. They have been there to provide education, treatment options, and emotional support for the patient and family through their journey. Why does it often feel that once a patient or family chooses hospice this team of specialists is not as involved in the patient’s care? Why does the patient and family have to lose these relationships and the support they have provided to them usually over many years? Communication between hospice teams and pediatric specialists doesn’t often happen as well as it could, but establishing and maintaining good communication between them can be the crucial element to a smooth transfer of care, maintaining continuity of care, and for promoting optimal outcomes. While hospices are the experts at providing palliation of symptoms and optimizing quality of life, pediatric patients are often medically-complex and can still greatly benefit from good collaboration with the child’s specialists.
Hospice of the Panhandle in Kearneysville, West Virginia is a predominantly adult hospice in a rural/suburban area two hours or more away from pediatric hospitals and specialists. This distance places barriers to patients and families seeking specialized treatment for pediatrics close to home. It also places barriers for providers who may want to send their patients home with hospice but are unfamiliar with the options for care that our community hospice can provide or the quality of care the patient would receive. Hospice of the Panhandle has worked to build the confidence in providers, patients, and families that we can be that missing link. While Hospice of the Panhandle (HOTP) does serve pediatric patients, it is a fraction of our patient population. In the last three years, HOTP has cared for 12 pediatric patients compared to over 3,000 adult patients. We recognized the special attention that pediatric patients and their families need and that this was an area of needed growth for the organization, as it is for many adult-focused hospices in the community.
We received specialized training through the PANDA Cubs Primary Palliative Care Training Program from our closest children’s hospital, Children’s National Hospital, in Washington, DC. We then formed a small group focused on pediatric care at our hospice. This group focused on creating a policy for our organization specific to pediatric hospice care. We used the NHPCO Standards of Pediatric Care (National Hospice and Palliative Care Organization, 2022) as a guide, as well as our combined experience of successes with past pediatric patients. One of the most important pieces of this policy is the focus on collaboration between the patient’s pediatric primary care physicians, specialists, and the hospice team. Although our pediatric census is small, we have seen many positive differences since prior to implementing the pediatric policy.
When a pediatric patient is admitted to a community hospice, in addition to getting consents to receive records, you should receive permission from the family to openly communicate with their primary care provider and other specialty providers and hospitals, etc. For the community hospice, understanding the journey of a patient’s disease from time of diagnosis and throughout treatment can help the team in many ways. To learn about the patient and family’s relationship and the level of trust with their providers, allows the hospice team to understand the dynamics and challenges providers have faced and what strategies were and weren’t helpful in addressing these concerns. This also gives the hospice a fuller understanding of how the patient and family came to the decision to choose hospice care.
Knowing why the patient and family chose hospice helps the team begin to form conversations about the plan of care. For example, conversations with patients and families signing into hospice because their primary providers suggested it while continuing chemotherapy will be different than conversations with those whose treatments have not been effective and the patient and family are simply “tired.” It is also important to know if their providers have had detailed conversations about prognosis prior to hospice admission. Gaining this history from primary care providers and specialists to help navigate these issues can prove to be vital to a successful hospice experience. It is also known to increase satisfaction and quality of care when the pediatric specialists and community hospice continue to communicate and build trust as the patient seeks treatment and care from both providers (Lindley et al., 2022).
Communication between providers should be initiated at the start of the patient’s care with hospice. This allows for communication methods to be established and a rapport to be built between providers prior to any pressing issues or concerns that arise. Hospices should reach out to the primary care providers and pediatric specialists on how each would prefer to communicate. In our experience, email has been successful because of the ability to alert the whole team through one platform. We use email encryption software so that we can communicate via email with full disclosure. This way, the community hospice can send providers regular updates on the patient after visits, and vice versa, to maintain an open dialogue. The hospice team can use this communication to reassure the patient and family that information is being shared between all providers which can relieve the burden for parents who feel the need to do this themselves (Boyden et al., 2021). This also builds confidence between providers and the hospice that quality care is being provided in addition to ensuring consistent messaging between the providers and the patient and family.
Concurrent care laws allow pediatric patients to continue to receive care from specialists for aggressive care alongside comfort care with hospice services, but conversations about concurrent care are vital and must always be carefully negotiated between the hospice and the providers. This is not only to determine who will be paying for individual treatments and medications, but from the hospice perspective as to what might be considered too aggressive based on the patient’s current condition and goals. The hospice team must always know the full scope of treatment the patient is receiving from specialists, but when this is reported by families, the hospice is often not given important details of the treatments and the options suggested by their providers. Consulting directly with the provider gives the hospice staff the opportunity to ask important questions, give congruent education to the patient and family, and to ensure hospice philosophies of care are being supported throughout treatment.
Working together, the whole care team can often come up with a plan that is easiest on the patient, that carries the most benefit versus any burdens of treatment, and that agrees with the patient’s wishes.
For the pediatric specialists who continue to treat the patient, it is important to note that the hospice team members are constantly having conversations regarding goals of care with the patient and family and these goals can change frequently. We must always consider and navigate the wishes of both the patient and family, and then communicate this to the pediatric specialists as these goals change. This sharing of information between providers can help both teams address all concerns and any conflicts between caregivers to streamline the patient’s goals and wishes.
Terms such as aggressive, curative, and palliative, are sometimes defined differently by specialty providers and hospice providers which can also create a point of conflict. For example, a Radiation Oncologist may recommend palliative radiation which could simply mean to them that it is not intended as a curative treatment but is intended to extend life for a few to several months. To a hospice provider, the goal of palliative radiation would be to target challenging symptoms that would help provide the patient with a better quality of life. Hospices value true informed consent and share with the patient and families all known potential risks and benefits of any treatments being considered. For some hospice patients, this can be as basic as discussing the risks and benefits of traveling to their primary provider’s offices for appointments or getting frequent/routine blood work and other diagnostic tests that they may no longer want or that have little benefit. At times when families choose to forgo any further testing and treatments, the hospice team might be the one to communicate this to specialists to relieve the burden of the family feeling like they are “disappointing” a provider. When hospices and providers have open communication, hospices can have more meaningful risks and benefits conversations, as well as practice more consistent messaging with less chance of the family feeling like their hospice team and their providers are in conflict. We have also found that increased communication between the specialists and the hospice team has decreased the number of pediatric patients that revoke from hospice care to seek treatment, sometimes dying shortly thereafter in a hospital far from their home and their family/community support systems.
Helping to align patient goals with ongoing treatments provided by the specialist is another benefit of care coordination. Oftentimes there are interventions that can safely and more comfortably be completed in the home setting or at a local facility instead of the patient and family having to travel. Below are two simple, yet very impactful examples of where good coordination of care between providers resulted in a positive patient outcome.
A patient in our program required intravenous anti-emetics via her implanted port. Her primary pediatric physician had scheduled the family come in to the clinic 1.5 hours away to have this completed. The physician’s office was not aware that we could complete this intervention safely in the home and save the patient and family from driving 90 miles to have the port accessed. In addition, we suggested to the specialist that a thoracic Pleurx drain be placed so that we could drain Pleural Effusions in the home to help relieve debilitating respiratory symptoms. The specialist took some time to research the intervention and then responded that this was a “brilliant idea.” The nurse was able to take information and even samples of the catheter and drain kits to show the patient and the patient’s mother what the procedure would entail, and they both agreed to the procedure. The outpatient procedure was quickly scheduled by the provider, and during the journey home the patient felt such relief and joy that she requested to stop at a favorite restaurant and was able to enjoy a meal for the first time in weeks. She was equally happy that she could receive regular draining’s in the comfort of her own home, whenever she requested them, instead of having to schedule appointments and make a 3-hour round-trip drive to do so. One of the goals of pediatric hospice care is to reduce hospitalizations and increase “normalcy” as much as possible. We must always strive to bring joy to the child’s life and demonstrate that we are helping them to have a life they feel is worth living (ELNEC Project Team, 2021).
Hospice teams observe patients in their home environment which adds a whole new dynamic and point of view that the team can share with specialists who do not see the patient and family in their living environment. Psychosocial or environmental barriers may be more evident when visiting a patient and family at home and can greatly impact their ability to participate in and successfully continue certain types of treatments. Sharing this insight can be very helpful to the pediatric specialist as they continue to coordinate care and discuss treatment options. Since the patient and family are often more at ease and more open in their home environment, the hospice team can observe the family as a whole unit, and learn their likes and dislikes, hobbies, etc., during these intimate home visits. Hospices can explore more thoroughly events the patient wishes to attend or a goal they may wish to accomplish and can dedicate more time and energy to help bring them to life. Coordinating and sharing these experiences with the specialists also allows them the satisfaction of seeing a child’s end-of-life goal met and is yet another advantage of close collaboration.
In summary, careful coordination between community hospices and the child’s providers allows the hospice team to better understand the patient’s journey and how to navigate challenges as the child’s disease progresses. Prior to the creation of Hospice of the Panhandle’s Pediatric Care Team and pediatric hospice care policy which includes the importance of close communication between providers, this was not prioritized. As a result, it was often very challenging trying to communicate with primary care and specialist providers. Focusing on open communication with the other specialists and care teams, who have been caring for the patient for what is often years prior to hospice admission, allows the providers to still be able to follow, share their experiences, and to have the opportunity for their own closure and this should be prioritized. Even once the patient enters their last days, hours, and following death, the hospice team should be reaching out to provide updates to the specialists who have continued to be involved throughout their hospice journey. This way, providers can hopefully begin to view their young patients dying comfortably in their own home, or closer to home, as an optimal outcome instead of simply as a “failure of treatment.” Concurrent care can be challenging, but it is a beautiful provision, especially when artfully negotiated between hospices and pediatric specialist providers. With providers sharing information and having a united front with a consistent message, the patient can remain at home with goals that can be met that allow the pediatric patient to have a life worth living for the time that they have remaining.
Boyden, J. Y., Ersek, M., Deatrick, J. A., Widger, K., LaRagione, G., Lord, B., & Feudtner, C. (2021). What do parents value regarding pediatric palliative and hospice care in the home setting? Journal of Pain and Symptom
Management, 61(1), 12–23.
ELNEC Project Team (2021). ELNEC Pediatric Palliative Care Modules. Accessed from https://hospiceotp.training.reliaslearning.com/
Lindley, L. C., Svynarenko, R., Mooney-Doyle, K., Mendola, A., Naumann, W. C., & Keim Malpass, J. (2022). Patterns of health care services during pediatric concurrent hospice care: A national study. American Journal of Hospice & Palliative Medicine, 39(3), 282–288.
National Hospice and Palliative Care Organization. (2022). Standards of practice for pediatric palliative care and hospice. Alexandria, VA: Author. Available at: https://www.nhpco.org/regulatory-and-quality/quality/nhpcohospice-standards-of-practice Accessed September 1, 2022.