Let’s imagine a child with a neurological disorder who has recently developed severe feeding intolerance and belly pain. She is crying all the time with zero relief. In addition to her pain and underlying condition, she also needs oxygen, has endocrine issues, and has developed painful muscle spasms. Her pediatrician thinks it is time to refer her to a team that can help relieve her discomfort and coordinate her care.
If you were this child’s parent, which would you choose, palliative care or complex care? And when is the right time to consider getting one of these teams involved? This article will describe the two types of programs, and help you determine which team is appropriate for your child.
What is a Complex Care Program?
Complex care programs are typically based in children’s hospitals, and treat children who require multiple specialists or have conditions that affect multiple organs. In many cases, they are designed to help treat “frequent fliers,” the children who are repeatedly hospitalized, often for the same condition. They are intended to coordinate care among specialists, treat the child holistically, and create a single point of contact for families.
Complex care programs may be for inpatients only, both inpatients and outpatients, or for outpatients only. Most commonly, the teams treat children while they are inpatient, and continue care on an outpatient basis. Some provide all primary care to the children they treat, while others retain the child’s pediatrician to provide primary care. Some are more consultative in nature, while others are heavily involved in all of the care a child receives.
In addition, some hospitals also offer comprehensive outpatient clinics for conditions such as cerebral palsy or muscular dystrophy. While these are not true complex care programs, they may serve a similar role for certain families. Similarly, some individual pediatricians or pediatric practices may specialize in treating complicated children, and may develop an outpatient program similar to a complex care team.
Complex care teams usually consist of one of more physicians, one or more nurses (who are often advanced practice nurses), and support staff such as social workers to assist with care coordination, paperwork, and billing. Some programs at teaching hospitals also include resident physicians, who are training in complex care as a part of their residency program.
One of the most important roles of a complex care team is to coordinate care. The teams develop comprehensive plans of care for each child by coordinating input from various specialists, as well as the family. The team’s goal is to oversee your child’s care, but they may also provide additional services, such as setting up appointments with specialists, coordinating care conferences, and providing resources for your child and family. Many teams often provide services that are traditionally considered to be more palliative in nature, such as helping families to make decisions, and providing pain control or treatment for debilitating symptoms.
Each program has different eligibility criteria, but most use three general elements to determine which children should enter their program:
- Children who use a large number of specialists
- Children whose condition affects two or more organ systems or who have multiple conditions
- Children with frequent hospitalizations or home nursing care
Children in complex care programs often have life-shortening conditions, though some may be expected to live a normal or near-normal lifespan. Some have stable conditions with multiple medical problems. Children with genetic disorders, chromosomal disorders, metabolic diseases, and neurological conditions are common participants.
Because reimbursement systems are not designed for children with complex medical needs, many of these programs are underfunded and under-reimbursed. For example, many insurers will not reimburse complex care physicians or nurses for care provided by phone, care provided by telemedicine, or care consults they participate in with your child’s specialists. As a result, they may restrict the number of spots in their program. Some programs have extensive waiting lists.
What is a Palliative Care Program?
Despite the common misperception that palliative care is end-of-life care, true palliative care programs are designed to care for children from the time a life-limiting condition is diagnosed until the child either is cured or dies. The primary goal of a palliative care team is to improve a child’s quality of life using medical, nonmedical, and even spiritual therapies. Palliative care services are appropriate for any child with a life-shortening condition who is experiencing any type of negative, painful, uncomfortable, or debilitating symptoms.
Palliative care teams may be hospital-based, community-based, or a combination of both. Hospital-based teams tend to consult on inpatients and see children in a clinical setting as needed. Some provide services in the community or refer to separate community palliative care agencies to provide services in the home. Community palliative care teams work primarily in children’s homes, using visiting nurses and providing additional home-based services, such as expressive therapies (music and art therapy), massage, or child life visits.
Palliative care teams are usually headed by one or more physicians, and use a team of nurses to provide much of the home-based care. Other team members typically include social workers, chaplains, music or art therapists, child life specialists, massage therapists, and similar individuals.
Since quality of life is the primary goal for palliative care, services are often designed to keep children at home instead of in the hospital. A child’s care plan will be created to maximize his or her quality of life, as well as the family’s quality of life, while reducing pain and debilitating symptoms. Families are permitted to pursue curative treatment through most comprehensive programs, but the teams are available to help families decide which interventions are and are not appropriate for an individual child.
Some programs provide some level of care coordination, but most programs do not provide or replace primary care services. Palliative care teams may help treat a variety of both acute and longterm medical problems, however, especially those that are impacting the child’s quality of life.
Any child with a life-limiting condition is eligible for a comprehensive palliative care program, from the time of diagnosis until the child is cured or passes away. Children who may be good candidates for palliative care include the following:
- Any child with a terminal disease, whether it is complex or not
- Any child with a progressive disorder that is likely to be life-limiting
- Any child with a likely life-shortening condition experiencing pain or uncomfortable symptoms
Children who are not considered particularly complex, such as a child with an eventually fatal congenital heart defect or a tumor, may be served by palliative care programs. On the other hand, palliative care programs often treat children with so-called stable but severe conditions, such as very complicated children with cerebral palsy, or children with Down Syndrome who have multiple complex medical problems. Presumed fatal diseases, including Spinal Muscular Atrophy and certain cancers, are common diagnoses as well.
Palliative care is also very poorly funded and reimbursed. In most cases, palliative care teams will take any family who requires services. Some of the less comprehensive programs restrict their services to children who are actively dying or likely to die.
Complex Care or Palliative Care?
There is considerable overlap between complex care and palliative care programs, and different programs may incorporate elements of both into their practices. In order to decide, a family must investigate the programs available in their area, and find which can serve their family appropriately.
While programs vary, there is often a difference in the goals of care between complex care and palliative care programs. Palliative care programs, while allowing curative care, are much more focused on the child and family’s quality of life, above all else. As a result, these programs try to keep kids out of the hospital, living comfortably at home, and providing them with care and services to maximize the entire family’s physical and emotional well-being.
While some complex care programs provide palliative services, in general, the goal of these programs is to coordinate or streamline medical care for a child. In this regard, they are more focused on medical systems of care, though obviously the child and family’s quality of life is of critical importance.
The types of children treated by both types of programs overlap significantly. While there are certain children in palliative care programs who are not complex, and certain children in complex care programs who do not have life-limiting diseases, a large percentage of children in both types of programs are both complex and have potentially life-limiting conditions.
In reality, many families will not have a choice between types of programs. Complex care programs are not yet available at every hospital, and when they are, they often have a limited number of spots or may only treat inpatients. Palliative care programs are more widely available, but not very many of them are truly comprehensive throughout the child’s lifespan (most are still more oriented toward end-of-life care) or are not pediatric programs. Few hospitals or regions have both options available.
To find programs, contact your child’s hospital and ask whether a complex care or palliative care program is available. You can also Google your city or state and the terms “pediatric palliative care” to find a community-based palliative care program. Often, word of mouth is the best way to find either type of program, as they may not be well advertised due to poor funding or a limited number of available spots.