The Challenge:
Help Katherine, who had been living with Parkinson’s disease for 10 years, determine which of several hospitals and associated programs was best for her before moving forward with elective Deep Brain Stimulation Surgery (DBS).
The Solution:
A combination of research, coaching, education, communication among healthcare professionals and attendance at medical appointments.
The Result:
In addition to coming through a successful surgical procedure with greatly improved functionality and comfort, Katherine has learned to advocate for herself as an informed healthcare consumer.
Many, Many Options and Decisions
When we met Katherine, she had been living with Parkinson’s disease for 10 years. With the productive time in her day decreasing steadily, Katherine was interested in investigating Deep Brain Stimulation Surgery (DBS) as a way to help improve the amount of functional time she had in a day, while also avoiding the side effects of the medicines necessary to manage her Parkinson’s.
Living in close proximity to several major medical centers in Boston, Katherine knew that she had her pick of hospitals qualified to perform DBS. But she was struggling with how to determine which program would be the best fit.
A Combination of Objective and Subjective Criteria
With help from Healthassist, Katherine created a list of objective criteria for each hospital (e.g., number of DBS procedures done each year; success rates; complication rates) as well as subjective items she deemed equally important. Using this list, she was able to rule out several programs which didn’t satisfy her criteria. Ultimately, she was able to select a program that included a full team of neurologists, neurosurgeons, nurses, physical therapists and other specialists who could communicate effectively and compassionately to meet her needs for the rest of her life.
The DBS procedure now behind her, Katherine tells us that with Healthassist’s help, she was well prepared both physically and emotionally to undergo brain surgery. She went home the day after the procedure with follow-up care from both the local visiting nurse agency and some private homecare services. She began the process of stimulator adjustments a few weeks later.
Through the process of evaluating DBS programs, and with coaching from Healthassist, Katherine also discovered that as an empowered healthcare consumer, she was in a position to evaluate potential partners in her care, just as the physicians were evaluating her as a DBS candidate.
Healthassist Services Overview
- Researching all programs in the area and identifying what was necessary for preliminary appointments.
- Assisting with the development of tracking tools to help Katherine chose the best DBS program for her and to monitor all the information necessary to continuously share with her DBS team.
- Gathering all appropriate medical records and diagnostic testing results and preparing a packet of required information for each program.
- Helping Katherine prepare an agenda for each appointment that included a specific set of questions for each team, thereby allowing her to systematically compare responses.
- Attending each appointment with her to provide another set of listening ears, acting as a silent scribe and to ask the questions Katherine might not think to ask in the moment.
- Preparing for her hospitalization and discharge; communicating with the physician following the surgery; communicating with the members of the discharge planning team to outline plans that were already in place for in-home care.
- Helping Katherine hire caregivers for private homecare services required for a short time after the surgery.
The Result
As a result of the DBS procedure and follow-up care, Katherine describes the productive time in her day as having increased from 40% to 65% – she is very pleased with the outcome.
Click here to listen to a 33-minute interview with Katherine regarding her elective surgery research.