End Stage Cardiac Disease: A MGH Patient’s Story

In late April of this year, a man presented to Massachusetts General Hospital’s Emergency Department with extreme weakness, volume overload, severe shortness of breath, and one wish: return to his native land, the Dominican Republic (DR), and spend what time was left to him with his family whom he had not seen in over 20 years.

After evaluation in the ED, the patient was started on Dobutamine (later transitioned to Milrinone in support of his need to travel) and admitted to the Cardiac Care Unit (CCU).

During admission to the CCU, the patient reiterated his determination to return home to his family. When the team explained the risks associated with this undertaking, the patient expressed understanding of the severity of his condition (end stage heart failure NYHA class IV, ACC/AHA stage D) and told the MGH team he was willing to accept all the risks and do whatever they needed him to do if it would get him home. The patient was not eligible for advanced heart failure therapies due to his social situation: his undocumented status prohibited an upgrade to insurance and he had no local family support.

• The MGH team sprang into action palliating his severe breathlessness, treating his volume overload with high dose diuretics, and focusing all other efforts toward creation of a safe travel plan home to the DR.
• Maria Seavey, RN (MGH CCU Case Manager) contacted the MGH IRC to initiate referral to New England Life Care for compassionate/free care Milrinone.
• Jose Aguilar, RN (NELC Onsite Liaison) and Carolyn Butterworth, RN, RD (NELC Onsite Teach Nurse) responded immediately, alerting NELC’s Partnership Development, Pharmacy, Nursing, and Quality Compliance teams.
• The NELC Onsite team, working in collaboration with MGH CCU nursing including Donna Boneck, RN (CCU Nurse), began teaching the patient immediately. It was critical to ensure he knew how to manage his medication and equipment prior to departure.
• A rapid response workgroup lead by Erica Sievert, PharmD (NELC Regional Director of Pharmacy) was activated to map out and plan all the logistics on the NELC side.?This included several clinical, safety and quality departments to ensure all aspects of the discharge and travel were coordinated in a safe and effective manner.
• Meanwhile, Dr. Rahul Sakhuja (MGH Cardiac Attending) began the difficult task of identifying an appropriate Medical Center and cardiologist in the DR willing to care for the patient upon arrival.
• Maria Seavey, RN and Marguerite Nardozzi (MGH Clinical Social Worker), worked with the airline securing approval for the patient to travel with 8 days of medication, 2 pumps and all associated supplies all while coordinating completion of required paperwork for the TSA.
• Time was of the essence. There was only one direct flight per week to the Dominican Republic out of Boston and, due to the patient’s medical condition, a connecting flight was too risky. If the MGH / NELC team missed this week’s flight, there was good chance the patient would not be well enough to make the trip at all.
• Dr. Rahul Sakhuja successfully identified an appropriate Medical Center and Cardiologist who agreed to accept the patient onto service upon arrival in the DR.
• ?At 10:00 p.m. the night before departure, Carolyn Butterworth RN, RD arrived at MGH to meet the NELC driver with the delivery of the patient’s medication. She proceeded to the patient’s room and hooked him up successfully to NELC’s pump.
• ?At 3:30 a.m. the day of departure, the patient’s MGH CCU nurse officially discharged the patient to Logan Airport, escorting him out of the hospital to begin his final trip home.
• The patient arrived safely in the Dominican Republic, connected with the cardiologist and had a brief hospitalization to review and coordinate his medication plan. He then joined his family and is very happy and grateful for the care he received. His family credits and expresses their deep gratitude to the “MGH Angels”.

The NELC Difference

“Thank you all. It is really nice to work with people who are thinking “how can we do this?” rather than folks who say why we cannot. I really appreciate this group and am so honored and appreciative of your time and dedication. With Warm Regards, Rahul”

?