For years, the ALS Multidisciplinary Clinic at Mass General has been at the forefront of patient care, continually seeking innovative methods to extend their reach and support individuals in the comfort of their own homes. Challenging traditional healthcare boundaries, they’ve embraced forward-thinking approaches, notably TeleHealth virtual consultations. Building upon this foundation, the ALS House Call Program emerges, drawing from established best practices, a commitment to patient-centric care innovation, and the core belief that genuine human connection is fundamental to effective clinical care. This program truly embodies a comprehensive Als Care Program designed to meet patients where they are most comfortable.
A Collaborative Approach to ALS Home Care
The ALS House Call Program stands as a testament to the power of collaboration, uniting the expertise of the ALS Multidisciplinary Clinic at Massachusetts General Hospital with the compassionate support of Compassionate Care ALS (CCALS). Together, our dedicated teams bring essential care directly to patients and their caregivers within the familiar surroundings of their homes. Our primary goal is to elevate the standard of patient care while simultaneously alleviating the burdens associated with healthcare accessibility. We meticulously coordinate all aspects of care, ensuring that home visit schedules are seamlessly integrated with the ongoing treatment provided at the ALS Multidisciplinary Clinic at Mass General, creating a holistic and efficient ALS care program.
In its inaugural year, the ALS House Call Program at Mass General achieved a significant milestone, conducting nearly 400 home visits. The Mass General team is comprised of Kristen Kinglsey, RN, MSN, House Calls Program Nurse, and Carl Lewenhaupt, NP. Our invaluable partners at Compassionate Care ALS contributed to 201 of these visits, with CCALS staff independently undertaking an additional 449 visits. Furthermore, Jean Batty, CCALS’ Government Affairs Liaison, provided crucial guidance through 149 Medicaid and Medicare consultations. Currently, our ALS care program extends its reach across nine of the fourteen counties in Massachusetts, including Worcester, Middlesex, Norfolk, Barnstable, Plymouth, Essex, Suffolk, and Bristol, with 37 patients enrolled in MassHealth benefiting from this service.
Kristen Kinglsey, RN, MSN, brings a wealth of experience to the House Call team. In addition to her role as House Call Nurse, she has served in the Mass General Respiratory Care ICU and is a Clinical Instructor at the Mass General Institute for Health Professionals. Her extensive background in critical care environments, particularly with ALS patients and their families, underscores her commitment to patient-centered, multidisciplinary care. Carl Lewenhaupt, NP, further strengthens the team, having joined the House Call program at the Healey & AMG Center in 2022.
The profound impact of the ALS House Call Program is best illustrated by the words of one of our patients:
“The house call was amazing. It was great to have them come to us to see what we are dealing with at home. My PALS did not have to deal with the travel to Boston and I could rest after they left. We are so grateful that they could come to us.”
Expanding and Sustaining the ALS Care Program
We actively engage with a growing network of house call programs and home care medicine providers, fostering continuous learning and sharing best practices, particularly concerning program sustainability. This collaborative networking has sparked considerable interest nationwide in our distinctive ALS care program. This interest is further fueled by research presentations, poster sessions, and informal connections established at both regional and national conferences, highlighting the innovative approach of our ALS care program.
Since 2018, the integration of the EPIC electronic medical record (EMR) system has significantly enhanced the efficiency of our operations. EPIC’s comprehensive capabilities have streamlined numerous aspects of the ALS care program, including referral processes, scheduling, documentation, billing, and communication among providers. Notably, house call visit notes are readily accessible for provider review, and all upcoming visits are visible to the entire care team within the Epic EMR system. This robust infrastructure enables us to bill for Mass General Nurse Practitioner home visits, with the majority of these claims being covered by insurance. For the instances where insurance coverage is not provided, the ALS House Call fund is in place to cover any denied claims through a carefully designed cost-capture structure, ensuring that patients are not burdened with uncovered medical expenses, reinforcing the accessibility of our ALS care program.
Insights gleaned from discussions with established house call programs indicate that this reimbursement model effectively offsets program costs, significantly reducing, though not entirely eliminating, the long-term reliance on philanthropic support. It is important to note that Compassionate Care ALS (CCALS) operates outside of this reimbursement framework, relying on its own funding mechanisms to provide its crucial support services within the broader ALS care program.
Personalized Care: The Heart of the ALS Care Program
The following patient testimonial poignantly articulates the profound value of the ALS care program, emphasizing the shift towards personalized care:
“I would like to start by thanking Merit, James, Ron Hoffman and their teams for making this idea a reality. The house call program concept of integrating medical care with related services was inspired by an ongoing program that our foundation funded some years ago with New York Presbyterian’s Division of Geriatrics. Sadly, I saw the opportunity to adapt the program to ALS as a result of my own personal experience with this disease. Therefore, I would like to spend a few moments explaining why the program is important to me.
If you were severely disabled and there were no effective medications, or surgeries or therapies to treat your illness, would you want to spend a day going to check in with your doctor? If you were so inclined and had someone to take you, you might meet with doctors and nurses, with occupational and physical therapists and you would leave with a daunting follow up list: prescriptions to fill, equipment to procure, and well-intended, albeit generic, suggestions to make your life easier.
What if instead, the medical professionals came to you at home together with a CCALS representative who could help you implement their recommendations? This individualized, integrated model of care is the heart of the house call program.
But it is not just about convenience for patients. It is the complement to personalized medicine, namely personalized care. Absent any treatments to cure ALS or even to make it a chronic but manageable disease, such care must remain the focus of any treatment plan.
Medical professionals know that each ALS patient has heterogeneous symptoms and a unique pattern of disease progression. What all patients share is suffering. Imagine that in a time frame that can be measured in months, everything that you have always taken for granted is taken away: The ability to stand without falling, to eat without choking, to breathe without gasping, or simply to hold your children and say “I love you”. Your home, once a place of respite, becomes an obstacle course and life’s simple pleasures, like a warm shower or family dinner become strenuous efforts fraught with danger.
We live in an era that prizes examination over intuition, technology over empathy, and the search for cures over care for the currently afflicted. But by going into patients’ homes, the experts on the house call team will gain insights on par with those afforded by the most advanced imaging techniques and microscopy. They will experience the illness as their patients live it and, in so doing, I believe they will be better able to ameliorate symptoms, ease discomfort and improve quality of life.
The assistance provided by CCALS is critical. It is hard for people who are well to make it through their to-do lists and nearly impossible for a person with ALS. For example, doctors and augmented communications experts had suggested various devices to help me communicate. But selecting a make and model, procuring the device, haggling with the health insurance company about reimbursement, unpacking and setting it up, and finally learning how to use it were formidable challenges. Instead, Christine Copley from CCALS brought an eye-gaze computer to my house, set it up, and spent several hours teaching me how to use it. She left me with her direct contact information in case of follow up questions. Her visit not only enabled me to write these remarks but more important, to communicate with friends and family.
ALS is not a physically painful disease but it is a soul-crushing one. I remain hopeful that all the funds that are going into research will bear fruit, preferably in time for me. In the meantime, I will rest easier, knowing this program is in place and hoping that it will serve as a prototype for other centers to emulate.
Thank you.”
– ALS House Call patient
This testimonial beautifully encapsulates the essence of the ALS care program: providing not just medical expertise, but also deeply personalized and compassionate care within the sanctuary of the patient’s home. It underscores the program’s commitment to improving the quality of life for individuals living with ALS and serves as an inspiring model for ALS care programs nationwide.
