PALLIATIVE & HOSPICE CARE

Pediatric palliative care (PPC) is specialized care focused on reducing the overall burden of a child’s medical condition to improve the entire family’s quality of life. These teams are made up of a wide range of professionals including doctors, nurses, social workers, chaplains, and sometimes other specialists such as psychologists, physical therapists and more. Working alongside your child’s other medical teams, they will provide a variety of services to reduce the physical and mental suffering of each member of the family. Who exactly is on your PPC team will simply depend on what is most appropriate for you and your child.

Often confused with hospice services, palliative care is not just for end of life. In fact, many families benefit from palliative care support early on in their child’s medical journey. At many hospitals or medical clinics, you can request these services at any time.

Your child’s PPC team will start by having a conversation with you and your child, if appropriate, to understand your wishes and get to know your family. Then they will make suggestions on how they can provide the most support. This might look like help managing the side effects of treatments. Or they could help you communicate with the medical team and advocate for you and your child.

These services are also not just limited to when your child is inpatient. The PPC team can support you in the hospital, in the clinic and at home. Ultimately, they will do whatever they can to ensure each day is the best it can be for everyone.

Below are just a few ways palliative care teams can help. Talk to your medical provider to find out how their pediatric palliative care department can support your unique child.

 

Your Family’s Needs	Ways Palliative Care Can Help
Care Coordination & Communication	Bring all medical teams together to coordinate care and support interdepartmental communication Help improve communication between the medical team and your family Ensure all involved in your child’s care are on the same page and working toward shared goals
Symptom Relief	Reduce physical pain and suffering Severe symptom management Reduce symptoms that interfere with your goals
Goals of Care & Decision-Making Discussions	Help explore all options, benefits, and burdens Help navigate difficult conversations Facilitate conversations around advanced care planning and goals of care
Support	Connect you with additional services and resources for addressing hardships related to medical care Emotional support for you, your child and their siblings Spiritual support

Hospice services are an extension of palliative care but focus more specifically on end of life. Like palliative care, hospice involves team members (and sometimes volunteers) from a variety of specialties. However, these services have an emphasis on comfort treatments, compassion, and improving quality of life as it nears its end.

To receive hospice services, a physician must put in a request and show that your child meets eligibility requirements, including that they are near end of life. However, in many places, unlike adults, children can still qualify for hospice services while receiving curative treatments. This is called concurrent care.

Hospice teams work to make life as easy as possible for the entire family during this very difficult time. In addition to providing services, they can help manage your child’s medications, medical equipment and supplies. Scheduling is flexible and several services are available 24 hours a day. Besides medical support, hospice offers services related to your entire family’s mental and emotional well-being. These could include music or massage therapy, spiritual support, bereavement services, and care from other mental health providers.

Hospice services are typically provided at home, though they can be provided in the hospital as well. While convenient, this can also be scary for both you and your child. The most important thing to remember is that your hospice team wants to make this the best time possible for everyone. You are the expert on your child and can lead the process.

Hospice workers will likely already be familiar with your child’s medical needs prior to coming over. However, they will rely on you for direction on your family’s routines and preferences . Since you are much more than a diagnosis, it can be helpful to create a brief “fun fact” sheet of things each of you want them to know. This can be a good activity for the family to do together and will help them get to know you and your needs. Additionally, hospice services can be ever evolving. If you do not like the staff member or services provided, you can request a change at any time.

Palliative care and hospice care are often confused and/or used interchangeably. Both are provided in addition to your child’s medical treatments and focus on offering the entire family support. However, each has a distinct role to play at certain times.

Below is an overview of the differences between palliative care and hospice care, as well as their many similarities.

Palliative

Hospice

Purpose: Improve qualify of life with or without curative care Criteria: Life-limiting diagnosis Goal: Relieve suffering, provide patient education, establish goals of care, and offer physical/emotional/social/spiritual support Time Frame: Any stage of illness from diagnosis onwards Location: Typically at the hospital, although some teams may offer outpatient or even home visits Funding: Insurance or self-funded

Purpose: Provide end of life care for patients Criteria: Physician referral indicating eligibility, unlike adults, pediatric patients can qualify while still receiving curative treatments (referred to as concurrent care) Goal: Support through end of life care with comfort and compassion Time Frame: End of life Location: Typically at home with some inpatient options Funding: Medicare / Medicaid / Insurance

Similarities
Quality of life focus Comfort treatments Multi-professional team involvement	Plan-oriented Physical & mental care	Bereavement services Children-specific services Family-centered