Frequently Asked Questions and Terminology
What is Pediatric Palliative Care?
Palliative care is the holistic approach to a person’s care that has a condition that may be life limiting, though they may also be receiving treatment and still working to maintain the best quality of life possible. Pediatric palliative care is the care of patients whose disease is not responsive to curative treatment, where pain control and control of other symptoms is paramount. Pediatric palliative care aims to enhance the quality of life of children and young people with life-limiting conditions. In addition to managing pain and symptoms, its focus is also on offering emotional and spiritual support, providing respite care and supporting the family through bereavement. The care that will be provided at the Crescent Cove Respite & Hospice Home is palliative care, providing comfort, and pain and symptom management as needed.
What is Respite Care?
Respite is short term care when necessary to relieve the child’s family or other persons caring for the patient. Families often provide extraordinary, round-the-clock, continuous care to their child for days, weeks and years without any “time off” or a “full-night's rest.” Crescent Cove will give families a chance to physically and emotionally recharge so that they can continue to provide the high level of care their child needs.
What are Life-Threatening or Life-Limiting Conditions?
Life-threatening and life-limiting conditions are often used interchangeably. They often refer to a diagnosis or condition that is not responsive to curative treatment and often mean that a child has a shortened life expectancy. Some conditions may include:
- Various malignancies/cancers.
- Rare genetic or chromosomal disorders.
- Heart/lung conditions
- Rare neurological conditions and complex chronic conditions such as:
- Cystic Fibrosis is a recessive genetic disease that affects the entire body, causing progressive disability. Difficulty breathing is the most serious symptom resulting from frequent lung infections.
- Duchenne Muscular Dystrophy is a hereditary disease that weakens the muscles that move the body that more commonly affects males.
- Neurodegenerative Conditions affect children in varying degrees but lead to an unfortunate progressive decline and loss of previously gained milestones. This usually progresses to intractable epilepsy (seizures) and loss of interaction with the outside world.
- Rett Syndrome is a neurological disorder of the grey matter of the brain which affects head growth, loss of hand use, stagnation and regression of previously acquired skills. Affects females more commonly and are prone to gastrointestinal disorders and seizures.
- Spinal Muscular Atrophy is a neuromuscular disease that results in progressive muscular atrophy (wasting away) and weakness. Requires comprehensive medical care and therapies.
What services does Crescent Cove provide?
Our vision is to offer an optimal caring and healing environment with skilled professionals providing palliative and end-of-life care to children, including pain and symptom management, massage and hydrotherapy, play, music, pet and art therapies. Crescent Cove does not replace the child’s primary care team, but collaborates with those professionals.
We will be dedicated to not only caring for children and young adults, but also provide a foundation of support and appropriate services to their families. This includes on-site accommodations so that the family may remain close yet still receive physical and emotional respite. This nurturing home environment will have open gathering spaces for children and families to spend rejuvenating time together as well as revered space for end-of-life care.
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How does the hospice/respite home you envision compare to a hospital hospice?
Not all hospitals have palliative care/hospice rooms available for patients and families. Palliative care rooms typically have more space and amenities for family members who wish to be near their child, whereas typical hospital rooms are usually tighter on space. Even though hospitals often have a larger room to accommodate a child who is dying and his/her family, they are typically near other hospital rooms where children are receiving care and treatment. Hospitals are necessary for urgent, acute care and treatments, but not always ideal or necessary for respite or end-of-life care unless the child is in need of, or desiring hospital-level, acute care and/or treatments.
Crescent Cove bridges the gap between home and hospital for families needing respite or as a comforting and sacred place at the end-of-life, with space for the family to stay as desired and for their family to be supported as well. Daily cares that would otherwise be provided at the child’s home are provided at Crescent Cove, as we offer a home-like environment that differs from the hospital environment.
What will be the criteria for children/families to stay at Crescent Cove?
The home will be available for children diagnosed with a condition that is considered to be life-limiting; meaning, the child has a shortened life expectancy and will most likely not live to adulthood. Specific admission and enrollment criteria as well as the referral process are currently being determined and defined by the Clinical Advisory Committee. Each Crescent Cove child and family will be welcome to 15 nights of respite per year and may utilize that time in various increments. There will be no limit to the length of stay for children being cared for while they are actively dying through death, and their families.
How is Crescent Cove different from Ronald McDonald House?
Crescent Cove and Ronald McDonald House (RMH) are two independent, non-profit organizations governed by two separate Boards of Directors, and have distinct missions and visions for serving children with life-limiting conditions and their families. Both organizations provide unique environments and services for children and their families, which make it important to distinguish the differences between the two organizations.
RMH offers families a place to stay that is near the hospital where their child is receiving treatment, providing a home-away-from-home for families who live farther distances from the medical facilities where their child receives treatment. It is a home available to family members who have a child actively receiving treatment in the hospital. Children may not stay at RMH without their parents and the house is not licensed to provide any medical care or intervention.
How do you plan to work with the hospitals? Will they have a stake in this?
Clinicians and clinical teams at Gillette Children’s Specialty Center, University of Minnesota Masonic Children’s Hospital, Children’s Hospitals and Clinics of Minnesota, Pediatric Home Service and Bayada Pediatrics all agree that there is a great need for this pediatric hospice and respite care home. It is our goal to work collaboratively with all of them.
Crescent Cove has actively met with with professionals from the pediatric palliative care departments to determine the best care that can be provided at this free-standing, community-based children’s respite & hospice care home. As part of our governance structure, we have a Clinical Advisory Council that represents an interdisciplinary team of professionals from various pediatric healthcare organizations in the Twin Cities, and we aim to have pediatricians and pediatric palliative care physicians on our Board.
At this time, our local hospitals have not contributed financially, but it is our hope and plan that over time, each hospital may be able and willing to contribute a portion of the operational costs, as this home will serve children cared for by each organization.
How does reimbursement work? What will the operational model look like?
Currently, there is no reimbursement available for respite stays through Medicaid or private insurance providers, but Crescent Cove has been working with the Minnesota Department of Human Services and CMS to implement a new waiver accessible through Medicaid. We received approval in March 2018 that the waiver was approved, and we will continue to work to implement this new form of reimbursement, the first of its kind in the U.S.
Because this home and the model for this home has not existed in our state, there were many details to be understood, including the most appropriate state license for the home, so that children can stay for both respite and, as needed, at the end-of-life. In order for this model of care to be sustainable in the future, we thought it essential to access reimbursement through Medicaid or private healthcare insurance plans and we are proud to say we are moving down that path.
Crescent Cove learned from "like houses" like Ryan House in Arizona, George Mark Children’s Home in California and Dr. Bob’s Place in Maryland as we navigate this discussion on an individual, case-by-case basis. All homes similar to Crescent Cove, including those in the United Kingdom, Canada and Australia, are funded by philanthropic funds.
It is our goal to offer respite and end-of-life care to children and families at no cost. This is because we do not want to turn families away and know that many families who have a child with a life-limiting condition have often exhausted all of their financial resources and have tapped into their long-term savings to look after their child.
What will be Crescent Cove's annual operating budget?
Wipfli LLP accounting firm has reviewed and refined our operating budget projections and capital campaign goal. Once open and operating, our annual budget will be approximately $2 million, depending on a low or high census. In order to be sustainable into the future, Crescent Cove is working to understand a reimbursement model from third party payers like Medicaid or health insurance plans to support the ongoing operations. Ultimately, philanthropic funds will be needed to primarily support the ongoing operations of the home.