What If Care Starts With Heart At Home for Medically Complex Children?
An exploration of a core value shift that might underpin a more compassionate healthcare experience for the future.
Originally published for The Museum of Ideas on Medium
“This sequence of increasingly complex geometrical figures and perspective drawings — collected in a sixteenth-century watercolor manuscript and preserved at the Herzog August Bibliothek in Wolfenbüttel — comes with no author’s note, editor’s preface, or running commentary. We know very little about its origins. All we have are shapes and color, with the occasional totem (eagle, rooster, and even a putto holding something like a pinwheel) dwarfed by the immensity of lines and angles.” Source via Public Domain Review.
By Kelli Mullen Brown and Shannon Mullen O’Keefe
What is at the heart of health care?
Life.
Or put another way, keeping us alive.
Children, perhaps, are those we pursue life for with the most determination.
Fueled by parents’ love and physician researchers’ willingness to innovate, children with life-limiting conditions and those coping with serious-illness like cancer are living longer, and in some cases overcoming diseases which would have once claimed their lives.
In the past twenty years, the prognosis for preterm infants has improved significantly, and during that time childhood cancer survival rates have continuously increased. Children with rare diseases are gaining more therapeutic treatments every year too. These human beings at the dawn of their lives are living longer. When we love someone, like we do these children, we want them to stay and live well. So we pursue treatments and technologies that enable this.
Yet, we also know that more time can mean more ongoing and complex care and more investments of all kinds.
Often at a high cost.
When an infant is born prematurely or parents are faced with a devastating diagnosis like cancer or rare disease, a family can be turned upside down in the space of a few words.
If pediatric illness were to be compared to a significant natural event, as it relates to the effects on the lives of care-givers and families, it might most aptly be compared to a river rising with spring rains, suddenly everything moves more quickly, oftentimes overspilling the banks.
The effects ripple across all aspects of life, redefining roles and expectations, and most often frame everything, including the future in a new way.
As humans, we can never know exactly what is in store for us, and families who encounter the serious or complex illness of a child are often caught off guard in a torrent of information.
Comprehending their diagnosis, exploring treatments and therapies, enduring doctors appointments and long hospital stays and making difficult decisions all take an enormous emotional — and financial — toll on parents.
The invisible architecture of costs
Lost income due to absences from work, or outright job loss, is the most tangible cost to families. This combined with the financial impact of high copays and deductibles, or out of pocket costs for therapies, medications and food not covered by insurance– means the next and following springs cause floods too.
There is more spillage as the costs add up and this can be financially devastating. Many caregivers report high rates of psychological distress. Moreover, as the family’s life is shaped around the care of their child, siblings, too, are at greater risk for mental health impacts.
These intangible costs of childhood illness do not show up neatly on an itemized medical bill, but nonetheless have a lasting impact.
And what about those itemized bills? What is the cost to the entire healthcare system?
Watercolor manuscript preserved at the Herzog August Bibliothek, Source via Public Domain Review
The high cost of high-utilizer healthcare
The itemized bills add up.
Stories abound of so-called ‘million dollar babies’, preterm infants who require hospitalization in neonatal intensive care units for months on end. The average price tag for childhood cancer is $833,000. For a child with a rare disease, the costs can be even higher. Exploring new therapies and new avenues — new technologies can cost more. In fact, rare diseases, which disproportionately affect children, show an economic footprint of more than $400 billion per year in direct medical costs.
These kids all fall into a health care category of high-utilizers.
High-utilizers ‘are a small group of patients who impose a disproportionately high burden on the healthcare system due to their elevated resource use, and often have unmet care needs or receive unnecessary care.’ High-utilizers, such as disabled adults and children, are only 12% of the Medicaid population, but they can account for up to 34% of Medicaid spending.
A study cited in Medical Care, The Official Journal of the Medical Care Section, American Public Health Care Association “estimates that the most expensive decile of patients accounts for up to two-thirds of total health care expenditures.”
All of this is money well spent, or is it?
Recurring emergency room visits and hospital admissions for medically fragile pediatric patients — high utilizers — drain the emotional and financial resources of families, and place an excess burden on the healthcare system.
This has never been more apparent than during the COVID-19 pandemic when overall healthcare resources are strained.
Watercolor manuscript preserved at the Herzog August Bibliothek, Source via Public Domain Review
What if care started with ‘heart at home’ for medically complex kids?
Our hearts represent more than just a hollow muscular organ that pumps the blood through our circulatory system by rhythmic contraction and dilation.
Our hearts represent our core–the innermost part of –us.
And when used as a verb–I heart that–for example–heart means that we very much love the thing that we are talking about.
What happens when we use these feelings as inspiration to sort our care strategies?
When we imagine that a value of heart means that our deepest care for something becomes the central and most important lens through which we look at our strategy.
This might mean prioritizing living well and in fact elevating the way the child and their family experience life as a part of the care strategy and this might be valued as equally important to other primary care outcomes.
This might mean taking a more expansive view of what success looks like. It may mean rather than focusing only on medical procedures and their immediate outcomes that the conditions in which the child lives become an equally important factor. That their very experience of life, takes an equal seat at the table.
Leading with heart might prompt us to ask and answer questions like this:
Is the child and their family at the core–central and innermost part of the care strategy? In other words, is love for the child and those who love the child at the heart of this decision?
What are the greatest concerns of the child and their caregiver?
What energizes this child? What energizes their caregivers?
What values does this family hold dear?
What are their hopes (and fears) for tomorrow, next month and next year?
Decisions will likely remain complicated, but the factors and inputs needed to make each decision, might help to determine new options–new possibilities.
Questions like these are at the core of palliative care, an approach which emphasizes the heart in healthcare.
The Institute of Medicine states that pediatric palliative care seeks to alleviate symptoms associated with a serious medical condition or its treatment and to enhance the quality of life for children and their families by addressing their unique psychological, social, and spiritual needs. Home based palliative care brings these services directly to patients, offering families with medically fragile children, expert medical care in their own homes.
Studies show that pediatric palliative care improves the quality of life of the family and reduces costs — by up to $3,331 per month per child — to the healthcare system. In fact, this is true for children and adults.
Palliative care services ebb and flow with the medical needs of the child, and the practical and emotional needs of the family.
Remember that rising river of overwhelm for families caring for children with complex medical diagnosis?
Home-based pediatric palliative care offers a buoy to cling to amid the deluge. According to one mom of a nine-year-old cancer patient, “Having a resource like [home-based pediatric palliative care] was a life-saver. Knowing we could request certain treatments at home was really helpful. The services relieved the stress of a difficult time.”
Although healthcare strategy based on the heart and built for home might not seem “efficient” by standard measures (driving to a patient’s home and spending time to teach a family how to care for a patient…) it can contribute to the triple benefit of improved experience, better health outcomes, and reduced healthcare costs.
That is if we’re willing to take a long-run view of things.
What are invisible benefits?
Keeping a long-run view in mind, consider the invisible benefits of starting with a home-based palliative care strategy.
Early Identification
Because home-based palliative care is based on an ongoing relationship with a trusted pediatric nurse, this can mean catching things early. We first notice most things in the course of our everyday lives, right? When parents have a relationship with a home healthcare nurse, they can help to identify potential health issues early to prevent long and expensive hospital stays.
Preventing costly ER visits
We all know visits to the doctor are costly, especially ER visits. An attentive caregiver and home health nurse who consults with physicians when questions or complications arise mean this more human approach can prevent disruptive and costly (unnecessary and perhaps not very helpful) ER visits.
This leaves the ER as a space for those who truly need it.
Overall family well-being
Having a loved one who can be cared for at home can be good for the family. Home-based pediatric palliative care attends to the needs of the patient, their caregiver and their siblings. Benefits arise over the course of a child’s illness, as social workers offer practical resources, counselors provide emotional support and expressive therapists provide relief from pain and symptoms.
The whole palliative care team eases the burden of serious-illness.
They sandbag the river banks.
With support like this in place, parents can maintain stability and steadiness in other, important areas of their lives, like caring for other children, maintaining relationships and sustaining work.
Our Opportunity
Our opportunity is to ask new questions, and carefully listen to the answers — especially of children with medical complexity and their parents — and to help facilitate care from home as an alternative to emergency room visits and hospital admissions.
There are indications that others see value in this idea of home as a place we might invest in. Some in the US government recognize this as a priority, as exemplified by the home and community-based services bill currently in the works.
Parents, physicians and all of us will continue cherishing the lives of each child, perhaps especially those with complex medical diagnoses who need more abundant care.
If we choose to value heart — someone (or a whole palliative care team) who knows and cares for us — in the comfort of our homes — we will create the experience that our humanity asks for.
Kelli Mullen Brown leads with heart. Her professional focus emphasizes the health and well-being of children with special needs. As lead fundraiser and strategist for Coastal Kids Home Care, California’s only pediatric home health agency, she strives to bring home-based palliative care and compassionate bereavement care to her community. A mother of three, including one son with a rare genetic syndrome, she lives the challenge of raising a medically complex child every day.
Shannon Mullen O’Keefe curates ideas. The Museum of Ideas houses her independent research, writing, thought leadership, and content contribution projects and collaborations. Previously she led consulting, coaching and research teams for years in a global professional services firm and recently served as an Interim Executive Director for a non-profit organization for which she now serves as the Board President.
Photo of the Grove Juicery Couch by Shannon Mullen O’Keefe for The Museum of Ideas: Conversations on the Blue Couch Series