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Sean M. Healey & AMG Center for ALS
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Mass General ALS experts believe the new ALS House Call Program will help to change the course of medical care planning and improve outcomes for people with Amyotrophic Lateral Sclerosis by bringing patient care into the home.
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.
Our new ALS House Call Program is designed to improve patient care while reducing the burden of accessibility. Mass General ALS experts believe the new ALS House Call Program will help to change the course of medical care planning and improve outcomes for people with Amyotrophic Lateral Sclerosis.
View photos from one of our house call visits in October 2017.
Katie Tee, RN is pictured with patient Linda Hank during a house call visit.
Katie Tee, RN and Ron Hoffman, Founder/Executive Director of Compassionate Care ALS visit patient Linda Hank with and her husband Mark Hank.
Ron Hoffman, Founder/Executive Director of Compassionate Care ALS and Katie Tee, RN
Nurse Katie Tee, RN, and Ron Hoffman, Founder/Executive Director of Compassionate Care ALS are pictured with patient Linda Hank.
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.
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