ALS House Call Program

For decades, the ALS Multidisciplinary Clinic team at Mass General has expanded and sought new ways to reach people at home, pushing boundaries of the healthcare system with novel approaches like TeleHealth virtual visits. The ALS House Call Program draws from the best of our existing approaches, our aspirations for novel patient-centered care delivery, and our fundamental belief that the bedrock of clinical care is human connection.

The ALS House Call Program is a deeply collaborative effort between the ALS Multidisciplinary Clinic at Massachusetts General Hospital and Compassionate Care ALS (CCALS). Our teams visit patients and caregivers in the comfort of their homes with the goal of improving patient care while reducing the burden of accessibility. We carefully coordinate care and design home visit schedules to integrate seamlessly with the care provided at the ALS Multidisciplinary Clinic at Mass General. The first year of the program met with incredible successes, a maturation of the programmatic goals, and honing of our team.

In the first year, ALS House Call staff from Mass General made nearly 400 home visits. The Mass General team includes Debra Skoniecki, NP, and Kristen Kinglsey, RN. ALS House Call staff from Compassionate Care ALS partnered with us on 201 of these visits. CCALS staff made an additional 449 solo visits and Jean Batty, CCALS’ Government Affairs Liaison, provided 149 Medicaid and Medicare consults. We currently provide care for ALS patients in nine out of 14 Massachusetts counties—namely, Worcester, Middlesex, Norfolk, Barnstable, Plymouth, Essex, Suffolk, and Bristol—of whom 37 are enrolled in MassHealth.

Debra Skoniecki, NP, is actively following 105 patients in the Program. Katherine (Katie) Campbell, RN, our original ALS House Call Nurse, has left Mass General to focus on family and pursue nurse practitioner training. We are sad to part with Katie, and we greatly appreciate her experience and insights in the early stages of the program. In March 2019, we welcomed Kristen Kinglsey, RN, as a House Call Nurse. Ms. Kingsley has worked in the Mass General Respiratory Care ICU and is also a clinical instructor at the Mass General Institute for Health Professionals. She has extensive experience caring for patients and their families, many of whom have ALS, in a critical care environment providing patient-centered, multidisciplinary care. She is excited and we are thrilled that she joined our team!

We piloted a survey to track patient satisfaction and solicit suggestions for improvement. Of the 30 responses received, out of 50 surveys sent, all were extremely positive with patients reporting improvement in physical and mental burden, visit durations, as well as overall satisfaction.

The following comment from one of our patients is further testimony to the effectiveness of the ALS House Call Program:

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. What a wonderful program. I hope we can continue to be a part of it. Katie and Erin are amazing, positive, helpful, and knowledgeable.

We are also increasingly connected to other house call programs and home care medicine providers, from which we learn a great deal, especially in respect to program sustainability. This networking has also generated great interest across the country in our unique ALS House Call Program, driven in large part by research presentations, posters, and informal connections given and made at regional and national conferences. We presented a poster about the Program at the 2018 NEALS, which was very well received by the ALS community. Importantly, we also attended the 2018 American Academy of Home Care Medicine’s (AAHCM) annual meeting, where we also presented a poster that generated enthusiasm and interest. AAHCM attendees are almost exclusively in primary care, whereas our Program was one of very few represented at the annual meeting led by a specialty clinic.

In August 2018, we integrated our referral and scheduling templates into the EPIC electronic medical record (EMR) system, which, through its many capabilities, has greatly streamlined our work in terms of the ALS House Call referral structure, scheduling, documentation, billing, and communication between providers. More specifically, house call visit notes are readily available for providers to review, and upcoming visits can be seen by all providers in the Epic EMR system. With this structure in place, we are now able to bill for the Mass General Nurse Practitioner home visits, the majority of which will be covered by insurance. For those visits that are not, the ALS House Call fund will pay any denied claims through a cost-capture structure we’ve created, such that patients will not have to bear uncovered medical expenses. Through discussions with well-established house call programs, we learned that this arrangement generally offsets costs and significantly reduces, but does not completely eliminate, the need for long-term philanthropic support. Along these lines, it is important to note also that CCALS is not part of this reimbursement system.

Patient Testimonial

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.