Holistic Palliative Care Program
We help kids living with medical complexities live as long and as well as possible. Hearing the word “palliative” for the first time may invoke confusion and fear. Many believe that this means “giving up” or “end-of-life” care, but palliative care promotes hope and improves the quality of life for your child. Both pediatric palliative care and pediatric hospice care can be provided alongside curative treatment. At Children’s Minnesota, we are committed to helping patients and families understand the benefits of palliative care.
Palliative care vs. hospice care
Palliative care: managing symptoms and instilling hope
If your child is referred to our palliative care program, it does not mean they are nearing the end of life. In fact, most patients receive palliative care and disease-directed treatments at the same time. Our palliative team provides multidisciplinary, holistic care and additional support for kids with serious illnesses – appropriate at any age and any stage of illness. We collaborate with parents to provide individualized treatment plans for pain and distressing symptoms, as well as support for coping with the stress of the illness. Our team will work closely with you and your child to achieve their best quality of life both in the clinic and at home.
Hospice: finding meaning and creating memories
For children or teens whose physicians are concerned that they may not live beyond the next year, Children’s Minnesota offers hospice care. Hospice is support provided when a patient’s serious disease is no longer responding to medical treatments.
However, pediatric hospice care, unlike adult hospice care, can be provided alongside curative treatment. We are a pediatric-specific, interdisciplinary hospice program ensuring your child’s utmost comfort in the hospital, in the clinic and at home. Our goal is to promote family-centered healing, goal setting and legacy-building tailored to your child’s needs. Hospice also provides a bereavement follow-up plan for the entire family.
Comprehensive palliative care: standing by your side at times of uncertainty
The palliative care team offers comprehensive care for pediatric patients living with serious illnesses. Palliative care complements the cure-specific medical care your child is already receiving. Our program uses a model designed so families and kids have the comfort of seeing familiar faces as they receive care from the same team in the hospital, clinic and at home. Additionally, we act as a bridge between specialties, communicating your child’s needs to other care teams. Together, our multidisciplinary team treats distress using a combination of pain and symptom control, integrative (non-pharmacological) medicine, psychological support and spiritual care.
You have a voice: We are here to listen and act
We work to ensure all children, from infants through young adults, with complex conditions receive individually tailored treatments for symptom management and support for coping with the stress of the illness. We also guide families in making difficult medical decisions during this journey. The goal of palliative care is to achieve the best quality of life for both the patient and family.
Pediatric palliative care summary:
- Appropriate at any age and at any stage, alongside curative treatment
- Specialized medical care for children with serious or complex conditions
- To live as long as possible, as well as possible
- Matching advanced treatment to patient goals
- Focused on relieving pain, distressing symptoms and stress of a serious illness
Your child may benefit from our palliative care program if:
- They are being hospitalized more often than usual and their condition is declining
- There is a need for advanced pain and symptom treatment
- Your family needs help choosing medical options that reflect personal values and cultural or religious considerations
- You need effective communication between multiple care teams
- You need expert advice in navigating the health care system and want your voice to be heard
Holistic palliative care frequently asked questions (FAQ)
Many people confuse palliative care with end-of-life care, or hospice care. Hospice care and palliative care programs share a similar goal of providing symptom relief and pain management. But they’re not the same:
Palliative care can happen at any time during a person’s illness, from diagnosis on. It does not depend on prognosis (a patient’s outcome) and can be given along with life-prolonging or curative care. Palliative care can be provided in hospitals, outpatient settings, and at home.
Hospice care is a specific type of palliative care. It focuses on providing care to patients who are not expected to recover. It is intended for people who are no longer getting treatment for their medical condition and who are expected to live for 6 months or less. Hospice care may be provided at home, in the hospital, or in a hospice facility.
The Concurrent Care Act allows pediatric patients to continue with palliative or curative therapies including chemotherapy, blood transfusions and experimental medications. In the adult hospice world, cancer–directed or cure-directed therapy is not allowed when in hospice. However, children under the age of 21 do not have to give up their other medical treatments in order to add hospice services to their care.
Admission to hospice means that we would expect the child to die within 6 months to a year. However, given the flexibility of our program and the complexities of the child’s condition if they survive past this length of time our team is able to assess their condition/needs and continue to provide support for the child and family as long as it is deemed appropriate. There are instances where a child may live well beyond what we expect or their condition may improve in which case we would graduate them from our hospice program.
No, palliative care is designed as an added layer of support for patients and families that are facing a life–limiting or serious illness. While hospice is included in palliative care, many children and families will enter palliative care for added support during periods of complicated illness and treatments. We have had many patients graduate from palliative care and no longer need that added layer of support. We do have a population of palliative care patients who will enter hospice at some point.
Yes, hospice care can often be provided within the hospital or within a family’s home. We are the only hospital-based and pediatric-focused hospice in the state of Minnesota. Our patients enter home hospice for added support as end-of-life approaches. Some families will elect to stay at home for their child’s end of life, and some families prefer to receive end-of-life care in the hospital. Families often adjust their plans for where their child dies, and the Children’s Minnesota’s hospice program is very flexible in how we support families in the most distressing of times.
Homecare: Skilled nurse visits to support interventions, skills and education for the care of infants and children in the home setting.
Home palliative care: Involves an added layer of support in the home with a smaller team of nurses who are specially trained in pain and symptom management, and perform the same functions as the nurses from homecare. Our nurses focus on the whole person and support families as they work to provide some level of care at home. Our mission is to help keep our pediatric patients to be as comfortable as possible, while supporting the family’s goals of care, treatment and interventions while we balance outside effects and interventions that could be causing some distress for the child and the family. Our psychosocial team visits families in the home as part of our program. Our licensed clinical social worker focuses on the family and offers support and resources to help the family live their best life possible. In addition, our child life specialists and spiritual care providers offer another layer of support and work with parents, siblings and the child to create plans to help work through common challenges that patients and families often encounter.
Home hospice care: Our home palliative care team provides support to patients who are at the end-of-life or have medical conditions that may lead to an end-of-life event within the next few months to a year. The same team members continue to offer support when patients transition from the palliative care program to hospice. Your primary provider group and palliative care physicians will assist you in making these decisions. It’s important to note that many of our pediatric hospice patients can continue receiving therapies, interventions, treatments, and medications while in hospice. This unique feature is specific to pediatric hospice programs. Our program has had patients in home hospice for short periods of time and patients supported in home hospice for years.
A palliative care provider can meet with parents or guardians within our clinic, by telehealth or in the hospital to discuss what is most important to them as a family to help develop their individualized goals of care. This can help families to make decisions for their child based on those goals, and the current and future disease process trajectory.
