journeycare, inc. - journeycare for children proposal

JourneyCare, Inc. ORGANIZATION INFORMATION

Mission

Make Every Moment Count for those touched by serious illness and loss. Vision

Always be the clear choice as a care provider, community partner, and employer. Constituency

Illinois residents throughout a ten-county area that includes Lake, McHenry, Cook, DuPage, Kane, Kendall, Winnebago, DeKalb, Will, and Boone counties.

Description

We are known for our broad continuum of care and innovative programming. Beyond traditional services, we have the largest pediatric hospice and palliative care program in Illinois, and we embrace non-traditional therapies and open access for patients receiving aggressive treatment.

We have never turned anyone away due to inability to pay. Our promise is to meet the patient where they are, build trust, and share the journey, regardless of reimbursement rates. We seek to put the patient in control of their care—because it’s the patient’s experience and the family’s memory.

Programs & Services

• Hospice Care o 2 In-Patient Units o Open Access

• Palliative Care • Pediatric Hospice & Palliative Care • Complementary Therapies

o Art, Music, Massage, Reiki, Pet Therapy • Grief Support • Community Education

Agency Staff

An expert, interdisciplinary team of 196 full-time and 88 part-time professionals makes our mission possible. We also rely on over 415 active trained volunteers, 200 of which provide direct care to patients.

Board of Directors

JourneyCare is governed by a dedicated Board of Directors—consisting of 22 individuals with a broad spectrum of experience and variety of community affiliations.

The JourneyCare Foundation (established in 1992 as the Hospice Foundation of Northeastern Illinois), also plays an active role in fundraising and helping the agency make lasting connections in the community. The Board of Trustees is comprised of 21 people.

2012 Total Served: 9,241

2,494 adult hospice patients

867 adult palliative care patients

115 pediatric patients

6,116 bereaved family members

Accomplishments

1982 — Hospice for McHenry County is founded in Woodstock by 5 women, pooling resources to offer end-of-life care in the area 1984 — A small group of volunteers establish a not-for-profit program called Hospice of Northeastern Illinois (HNI) in Barrington 1986 — HNI is licensed in Illinois as a volunteer hospice, accepts its first patient, and moves into space donated by Good Shepherd Hospital 1988 — HNI obtains license as a full hospice 1989 — HNI merges with Hospice for McHenry County, becomes Medicare certified, and begins offering grief support services 1991 — Agency moves to a large, freestanding office in Barrington & offers memorial services 1992 — Hospice Foundation of Northeastern Illinois is founded to provide financial assistance to HNI; Northwest Community Hospital’s hospice program dissolves into HNI 1995 — Camp Courage is created for children and teens that have lost a loved one 1996 — HNI receives accreditation from The Joint Commission and provides care to 1,000 patients in a single year 1999 — Hours and triage services are extended to provide 24-hour on-call coverage 2002 — 10,000th patient is served, a Crystal Lake work station opens, and clinical staff receives laptops to chart patient visits 2005 — Hope’s Friends is launched as one of only a few pediatric hospice and palliative care programs in Illinois; art, music, massage, and pet therapies are now offered 2006 — Partnership with Centegra results in opening the Woodstock inpatient unit 2007 — Building a Legacy of Care capital campaign kicks off for the Barrington unit 2009 — Construction begins on the 16-bed, LEED-certified, freestanding hospice home; the campaign reaches $18.1M; a palliative care program is launched 2010 — The Pepper Family Hospice Home and Center for Care opens—a realization of the founders’ dream to build a home 2011 — Open Access hospice program forms and HPNI reaches record census numbers

2012 — Woodstock in-patient unit is renovated, providing a more home-like setting

2013 — Agency changes name to JourneyCare

JourneyCare, Inc. 2013 Request – JourneyCare for Children

EXECUTIVE SUMMARY

Funding Requirements Expertise Need Project Synopsis

JourneyCare requests from a grant of $25,000 to support our pediatric program, JourneyCare for Children, which provided hospice and palliative care to 115 medically-fragile children in 2012. JourneyCare is a community-based non-profit agency committed to make every moment count for those touched by serious illness and loss. As an emerging regional leader, we are known for a broad continuum of care and innovative programming. We have the largest pediatric hospice and palliative care program in Illinois and embrace non-traditional therapies and open access for patients receiving aggressive treatment.

Our mission is carried out by a team of board-certified physicians and highly-skilled professionals from varying disciplines. With 15% of clinical staff currently certified in hospice and palliative care, JourneyCare strategically focuses on continuing education to ensure we are experts in pain and symptom management and end-of-life care. And our business model has been intentionally designed to produce a predictable, sustainable, world-class experience for patients, families, and partners. Three critical factors make it urgently necessary to grow our JourneyCare for Children program. First, JourneyCare is seeing a growing need for this care, evidenced by a steadily increasing patient census. The program is also caring for patients for longer periods of time, many of whom have extremely rare and complex diseases. Second, roughly 40% of our pediatric patients have no insurance and lack the financial capacity to pay for their care, resulting in “charity care” costs of $339,400 in 2012. And third, JourneyCare for Children provides crucial services in the home and addresses needs of the entire family, such as pre-bereavement care and a Child Life Therapist who cares for needs of siblings. Expanding our pediatric program will solve these problems by:

• Reducing pain and distressful symptoms for even more children coping with a life-limiting condition;

• Informing and involving the entire family in discussions about care to develop an appropriate, goal-driven plan of care;

• Eliminating the financial burden for families unable to pay for care; • Providing care in the patient’s home and extending a variety of

services to the entire family; and • Ensuring care team members receive the ongoing training and

education necessary to provide exceptional care. The ultimate benefit of this program is an improved life experience for pediatric patients and their families coping with a serious illness. JourneyCare for Children offers hope for better days and more moments of peace and joy—a purpose that grounds us in our work at JourneyCare.


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Needs Addressed and Population Served The number of children living with life-threatening conditions is increasing due to advances in pediatric medical and surgical care. Similarly, the number of deaths in children with complex chronic conditions has also been declining. Simply put: children with chronic illness and complex health care needs are living longer, which requires more long-term and creative approaches to delivery of care coordination and pediatric palliative and hospice care services.

During the past decade, pediatric palliative care has become an established area of medical expertise. Compared with adult patients, pediatric patients who receive palliative care services have a greater diversity of medical conditions and duration of survival—in fact, a 2008 cohort study found that two-thirds of pediatric patients were alive more than a year after initiating palliative care. This certainly underscores a pronounced need for pediatric palliative care teams to be properly resourced to meet the needs of these patients and families.

For pediatric patients who die, though, one prominent issue is the location of their death. Current studies show that most children are still dying in the hospital—mostly in an intensive care unit (ICU) setting. The actual percentage of in-home deaths in 2003 was 18.2%. Yet historic data indicates 70% of families would choose for their child to die at home if they had adequate support. For JourneyCare in 2012, 90% of our pediatric patient deaths occurred in the home—thanks in part to the care and resources made available to our families.

Receiving the care is not always easy, with most families experiencing a multitude of barriers to receiving optimal pediatric palliative care for their child. These include but are not restricted to limited financial resources for specialized pediatric care, limited access to specialty care in rural areas, communication problems, inappropriate continuation of use of advanced life-saving technology, inadequate assessment and management of symptoms, and professionals’ lack of training and expertise.

One of the most crucial obstacles we have noticed at JourneyCare is the constraint that financial resources can place on a medically-fragile child’s care. About 40% of our pediatric patients require “charity care” because they lack insurance or are receiving Medicaid (All Kids) for medical treatment. Presently for pediatric patients, funding is not available for medical treatment and palliative care concurrently so families must choose one or the other. Unsurprisingly, most parents opt for aggressive, life-extending treatment and so the palliative care goes unfunded.

Having recognized that palliative care is an ideal treatment for the side effects children experience while undergoing new medical testing and curative treatments, our pediatric program, JourneyCare for Children, began in 2005. Patients in this program range in age from birth through 21 and experience a great variety of chronic life-limiting conditions. Approximately 75% of patients receive pediatric palliative care and 25% receive pediatric hospice care. Additional demographic details are as follows:

2012 Pediatric Patient Admission Demographics Age 0-5 32 51.6% 6-12 13 21.0% 13-21 17 27.4%

Sex Female 34 54.8% Male 28 45.2%

County Cook 27 43.5% DuPage 13 21.0% Kane 8 12.9% Lake 6 9.7% McHenry 8 12.9%

Service Location Patient Home 56 90.3% Barrington IPU 1 1.6% Hospital 1 1.6% Other 4 6.5%

Race African American 7 11.3% Asian 2 3.2% Caucasian 35 56.4% Hispanic 14 22.6% Other 4 8.1%

Financial Class Fee for Service 18 29.0% Per Diem 13 21.0% Unfunded 24 38.7% Medicaid Hospice 5 10.3% Undefined 2 3.2%


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Additionally, the 115 patients from last year—as a group—had nearly two dozen different primary diagnoses, which is a testament to our regional reputation as a substantial provider of pediatric hospice and palliative care. Our capacity to care for some of the most complex patients has made JourneyCare for Children one of the largest programs of its kind in Illinois.

The JourneyCare for Children pediatric patient population, or census, has steadily grown since the program began, serving just 5 patients the first year. So far in 2013, our average daily census for the program is 75.8 children. And a multitude of factors are causing patients to stay on service for longer periods of time. In 2012 the average length of stay (LOS) was 337 days, a number that has grown from 253 days when compared to 2011.

A typical child in this program is who was 8 years old when he died. was three when he was diagnosed with a rare neurological disease that gradually caused him to lose the ability to control his body and his ability to communicate. JourneyCare took on ’s care and one of the first things that staff did was provide symptom and pain management, and then education to the family on end-of-life care. They helped ’s family understand how to create an optimal home life routine for him so that he could have the best quality of life possible.

loved when the Music Therapist would come and sing to him, but his favorite person was his Massage Therapist, . Volunteers also came to the home to offer much needed respite from the multiple complex needs of caring for a chronically, terminally ill child like . His short life ended peacefully with his mom and dad holding his hand; everyone was thankful he was able to be in his own home until the end.

For families who are so used to going to doctor appointments and making frequent trips to the hospital, it is a substantial benefit to them that the pediatric team comes to them and provides care in the home whenever possible (currently 90% of patients receive care at their residence). This component, in particular, is one of the key factors that make our program so transformational.

Chronic illnesses not only affect the overall well-being of the sick child but also impact the lives of their (healthy) siblings. A crucial part of a family’s interdisciplinary care team is our Child Life Therapist. One of only 15 Child Life Therapists specific to hospice care and the first employed in the State of Illinois, she creates opportunities for families to cope with the difficulties associated with their child’s illness. She works with siblings, parents, and the patient, encouraging them to share feelings, participate in therapies, and bond as a family.

Program Description JourneyCare for Children provides hospice and palliative care to medically-fragile children who range in age from birth through 21. As needed, support is available twenty-four hours a day, seven days a week and is provided at the patient’s home. Each of our pediatric patients is incredibly unique and an individually-tailored menu of services is provided based on established needs and wishes of the family.

Upon admission, each child and family is assigned an expert, interdisciplinary support team that offers a continuum of emotional, spiritual, and educational support. The team includes a pediatric-trained medical director, nurses, social workers, and chaplains. Some families also benefit from the involvement of a child life specialist, therapists, grief counselors, certified nursing aides (CNAs), and trained volunteers. Our goal is to provide the right care, delivered by the right person, at the right time.

Along with a physician providing medical leadership, our registered nurses coordinate day-to-day medical care that alleviates pain and other symptoms. They also educate and support the family about expectations during the end-of-life process. CNAs help with everyday comfort needs such as bathing and grooming, and social workers and chaplains reach out to patients and families to offer emotional and spiritual support. The accountability our teams demonstrate—for adult and pediatric patients alike—is tremendous. Weekly interdisciplinary group meetings (IDGs) take place for team members to consult one another about their patients, share resources, and seek advice for challenging situations.

Through collaboration each team works to achieve the following: • Reduce pain and distressful symptoms for the child and family as they cope with the difficulties

associated with life-limiting conditions • Inform and involve the entire family in discussions about the child’s care and develop an individualized

plan of care appropriate for that particular person


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• Coordinate continuity of care across each setting—within and outside of the hospital—by interacting and communicating with other facilities

• Facilitate the resolution of family’s practical needs, such as respite, assistance with insurance providers, or arranging for volunteers

• Offer pre-bereavement support early in the disease trajectory as well as grief support to the family after the child’s death (for at least 13 months)

Families often feel scared, alone, and overwhelmed when coping with a child’s serious illness, with stress playing a major role in their lives. For this reason, JourneyCare also employs a Certified Child Life Specialist (CCLS), an emerging specialty in pediatric care who works with overwhelmed parents and siblings who may feel overlooked. Through encouraging various activities like journaling, art therapy, games the specialist helps to decrease stress and anxiety, as well as strengthen the bond between family members as they go through this difficult journey.

When appropriate, JourneyCare offers complementary therapies to its patients. These holistic methods (art therapy, massage, music therapy, pet therapy) can also achieve comfort and pain management when traditional pharmacological approaches might fail. Such a collective approach helps achieve the ultimate goal of JourneyCare for Children: to relieve and control all dimensions of suffering that accompany the advanced illness of a child. We want to create the best day possible—every day—for each patient and their family.

Specific and Measurable Goals

Goal 1: The pediatric Average Daily Census (ADC) will grow to a total of 64 children. Baseline: The ADC for the 2012 calendar year was 59, meeting the projected goal. This number has grown

steadily—from an average of 49 children per day in 2011 and 35 children per day in 2010.

Goal 2: JourneyCare will increase our quality of care and compliance in bi-annual surveys, achieving 87% or greater positive response among our pediatric patient families.

Baseline: In 2012, 86% of families responded that the overall quality of care received while on hospice was “excellent.” JourneyCare is routinely meeting or outperforming state (74.4%) and national (75.6%) benchmarks for overall patient and family satisfaction.

Goal 3: JourneyCare pediatric nurses will maintain their Certified Hospice and Palliative Care Nurse (CHPPN) certifications and JourneyCare will ensure that any non-certified staff acquires this distinction. Additionally, hold one retreat to encourage learning, trust, team building, processing of experiences, and rituals to assist in healthy grieving.

Baseline: In 2012 all nurses were working towards their CHPPN certification, and one was maintaining her certification. A staff retreat to the NHPCO conference yielded a multitude of benefits.

Goal 4: JourneyCare will establish relationships with 5-10 new potential healthcare partners to create greater awareness of the program and bringing pediatric patients onto our care sooner.

Baseline: Out of 62 pediatric admissions in 2012, 10 were from hospitals and another 6 came from community and organizations, home health agencies, physicians or specialty clinics.

Program Staff & Collaborations As a regional leader in this type of care, JourneyCare employs an expert, interdisciplinary team of clinicians and also values the dedication of trained patient care volunteers (an area we are expanding this year). As you can imagine, the care provided to pediatric patients differs from our adult patients and so a different staffing model has been developed.

The pediatric care team is led by two people with the education and experience to care for this fragile population—a highly-credentialed physician and a managing nurse certified in pediatric hospice and palliative care (CHPPN). The Medical Director for JourneyCare for Children, , has more than 40 years of experience in pediatric care at Lutheran General Hospital where he led the Department of Pediatrics for 15 years. Prior to that, he was their Director of Neonatology, and throughout his impressive career,

has published and presented more than 215 documents.

The nurse in charge of our pediatric services is . She has been a member of the JourneyCare staff since 2001 and joined the pediatric team in 2009. A graduate of Elmhurst College, she worked


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for several years at Resurrection Medical Center in Chicago and subsequently held positions in the home health care field and at Advocate Good Shepherd Hospital in Barrington.

Not including , the current pediatric daily census (77 children) necessitates five (5) registered nurses (4 full- and 1 part-time), two (2) social workers, and one (1) home health aide, pediatric chaplain, and administrative assistant. We are also proud to employ , one of only 15 Child Life Therapists specific to hospice care in the country and the first employed in the State of Illinois. Clearly, qualified candidates for this specialized field are rare, yet in seeking additional team members JourneyCare does require experience working with the pediatric population and gives preference to those with hospice experience.

With regional recognition as a leader in pediatric palliative care, JourneyCare facilities serve as a training ground for students obtaining degrees or certifications (some through Lutheran General Children’s Hospital). JourneyCare for Children is proud to offer clinical rotations for Advance Practice Nurses and Child Life Specialist interns, in particular. The agency is currently affiliated with five nursing programs, two medical assistance programs, and a health information program.

We are a member of the Illinois Respite Coalition (IRC) and continue to collaborate as a member of the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC)—the goal of which is to further education, advocacy, and clinical improvement projects. JourneyCare for Children team members also assisted in authoring the Certified Hospice and Palliative Pediatric Nurse Exam, available for the first time ever in March 2011.

The many collaborative relationships established through the 8 years of this program help strengthen our services and help make JourneyCare for Children more attractive to new partners, potential employees, donors, and, most importantly, patients and families.

Evaluation We rely on several best-practices to ensure family satisfaction, including but not limited to: primary care case management, integration of a child life therapist, pre-bereavement support early in the child’s disease trajectory, employing nurses with CHPPN certification, and in-home visits.

JourneyCare uses the evaluation standards set by the National Hospice and Palliative Care Organization (NHPCO) and twice a year our Quality and Risk Manager sends out a survey to families served through JourneyCare for Children. Through quantitative and qualitative questions we ask them to rate the overall care of their child, support to the family, role of the child and family in the care plan, and pain and symptom management.

Respondents indicate their level or agreement using a rating system of 1 (strongly disagree) through 5 (strongly agree). The outcomes from July -December 2012 (the most recent available) show an average score of 4.7 across all categories. Upon receipt, JourneyCare also benchmarks the data against hospices that are co-members of the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), often receiving the best response rate.

Additionally, JourneyCare holds quarterly Quality Assessment and Performance Improvement (QAPI) meetings. Participants include a cross-representation of the agency, along with board participation, and the goals are to highlight various performance improvement projects and provide regulatory and dashboard updates. And last, from a compliance standpoint, JourneyCare has been accredited by The Joint Commission since 1996, is Medicare certified, and demonstrates the elements of compliance as defined by the Office of the Inspector General (OIG).

Sustainability Ongoing success of the JourneyCare for Children program will be achieved through a three-fold approach, including a well-designed business model, advocacy efforts for appropriate pediatric care reimbursement, and ongoing fundraising efforts.

First, JourneyCare recognizes that payment reform has already started and hospice revenues will decrease relative to costs. So JourneyCare began the implementation of an efficient, flexible operating model in late 2011 as part of our strategic plan. While the process of rolling out this business model will take a few years, the result will be a well-designed model that ties work design to financial performance. It will be built for change and can be easily adjusted to respond to funding challenges.


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The anticipated payment reform presents an unclear picture of the funding landscape we will face with changes to Medicare. But that doesn’t change the fact that presently for pediatric patients funding is not available for medical treatment and palliative care concurrently. Our advocacy efforts work towards a goal of developing appropriate pediatric care reimbursement systems based on the fact that the type of care programs like JourneyCare for Children provides reduces the overall cost of care and lightens the burden of the current healthcare system.

Finally, an ever-present approach to establishing a sustainable agency (and JourneyCare for Children program) is fundraising. JourneyCare is already more heavily relying on fundraising efforts to continue providing the same level of care to an increasing patient load. The JourneyCare Foundation is committed to supporting the entire range of services JourneyCare offers—including pediatric care—in the years to come and is seeking the support of corporations, foundations, and individual private donors.

Conclusion In 2005, knowing about the quality care we were providing to adult patients in the region, a community member asked JourneyCare to take on the care of their young child with a rare neurological disease. Even though we knew it would be a challenge, Parker became our first pediatric patient and we never looked back. Today in 2012, 250 patients later, JourneyCare for Children is the largest program of its kind in the state of Illinois.

When families are scared and confused about their child’s illness, JourneyCare for Children is there to reduce pain and distressful symptoms through in-home visits, coordinate care among multiple physicians, inform and involve the entire family in the care of the child, and, in 40% of cases, eliminate the financial burden of care by providing services at no cost.

Supporters of this program have found that JourneyCare improves the life experience for these patients and their families and, quite simply, offers better days and more moments of peace and joy. Our pediatric program is definitely an important component of our mission to make every moment count for those touched by serious illness and loss. We hope you will join us as we continue paving the way for excellent, comprehensive care for the medically-fragile children of northern Illinois.

journeycare, inc. - journeycare for children proposal

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