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Nursing Home Resident Advocates For Patient-centered Primary Care For Herself And Others

4665fcefa45d8a892d09808b1059a4ae-huge-peA nursing home resident and consumer advocate for others like her, Penny Shaw makes the case for community-based primary care for nursing home residents. 

By Penny Shaw, Ph.D.

I’ve lived in a nursing home for 14 years, and I’m developing a community-based model of primary care because I know it will be better than what is available to me in my facility. I’m 73 years old, and I had an acute non-resolving episode of Guillain-Barre syndrome in 2001. Initially on life support, I was intubated for 5 years.

During the early years in my facility, I received primary and subacute care with 24-hour nursing. Functionally, I have had quadriparesis (muscle weakness in all four limbs) since the acute episode and am a total-care patient, except for being able to use my hands to brush my teeth, eat, read, write and use a computer. I am a lift transfer. My facility did an excellent job of keeping me alive and then removing the tracheostomy tube when I no longer needed it in 2006, but it still took several years for me to truly become my former self again. In 2010, I read my medical chart for the first time, and found I was being given six medications that I didn’t need in applesauce, as well as two medications as needed for sleep. I had all 8 discontinued. Unnecessary drugging is a well-known phenomenon in nursing homes. In 2010, I also requested and received a power chair.

By 2011, I had become a nursing home and disability advocate. I assessed whether I could live in the community. At age 68, with long waiting lists for affordable accessible housing and MassHealth personal care attendant policies which would not have met my needs, I chose to stay in my facility. I did decide to try to live as similarly as possible to my disability colleagues living in the larger world. I started by seeing outpatient specialists that I could have seen in my facility.

Over the years I outgrew the nursing home model of primary care. I didn't like the lack of dignity of talking to my physician while in bed. I didn't like being interrupted unexpectedly by him while doing creative work on the Internet. I was shocked to be asked a question in the reception area about my advance directives, which I intentionally didn't answer. Not only was it a HIPAA violation, but also a social worker came over and asked to be part of the conversation!

I didn't like having a physician, a generalist, disagreeing regularly with the treatments of the specialists I saw. I didn't like my physician not accepting my legal right to refuse his recommendation for change of orders for insulin. These are two examples of the paternalism, rather than person-centered care, nursing home residents face regularly. My physician is basically a good well-intentioned person, so it took some pondering for me to figure out what was actually happening. What I concluded is that in nursing facilities, it is more difficult to maintain professional boundaries as everyone - residents and staff - live and work in close quarters. Physicians are accustomed to making treatment decisions without informed consent, unlike in their private practices. In a published piece, a nationally-known geriatrician and medical director of three nursing facilities wrote that he does employee physicals and probably oversteps some boundaries by giving a few employees medical advice. His statement confirmed my thought that professional boundaries are porous in nursing homes.

Federal nursing home regulations permit residents to choose their own physician, and I would have chosen the other one in my facility, but there was a policy against this. Choosing one's own primary care practitioner, rather than having one assigned, is essential to developing a good relationship, good communication and trust. So I was left with no other option but community-based primary care. I knew it would be best for me. But the decision presented challenges.

The regulations regarding physician's services require not only that each resident have a physician, and another physician when the regular physician is not available, but that the physician sign all orders for care provided in the facility, as well as write, sign and date progress notes. My facility doesn’t yet allow physicians to sign electronically, so this is a barrier for a primary care physician to be willing to take a nursing home resident into their practice. Coming in person to sign takes time and isn’t reimbursed adequately.

I started by calling Fenway Health in Boston as this practice has a history of advocacy on behalf of individuals suffering from health care disparities. With openings only for a couple of recently-board-certified physicians, and given my complex medical needs, I hesitated. Through a colleague, I was directed to Rushika Fernandopulle, who graciously gave me a consultation, and helped me focus on MassGeneral Hospital where I receive my acute and specialty care. I called the physician referral service and now have a primary care practitioner at MGH. My former physician, in his role as the medical director of my facility, has agreed to sign the orders my community primary care practitioner wants. This eliminates the need for her to travel to my facility to sign. My medical director's willingness to accommodate me like this indicates his decency as a person.

The health care delivery system I now have -- a community physician, scheduled appointments, private office space, confidentiality and professional boundaries -- has had a positive psychological impact on me. I have been given back my personhood, my dignity, empowerment in my health care. I am more normalized and happy. Without doubt, a community-based model of primary care is best for me.

Having met and talked to residents and family members in other facilities, and on a toll-free nursing home helpline I answer, I know care delivery problems in nursing facilities are systemic. They are not due to lack of professionalism on the part of any individual physician. The delivery of primary care in nursing homes is thus in serious need of reform. As I work out the details of redesign for myself, I am hopeful I can develop a model of community-based primary care that can be useful to other residents.

Penelope Ann Shaw, PhD, is a former teacher of English as a second language and a doctor of French language and literature. Now a nursing home resident, she is a board member of the Massachusetts Advocates for Nursing Home Reform and of the Disability Policy Consortium of Massachusetts, as well as a policy advisor to the Nursing Home Division of Center for Medicare and Medicaid Services’ Survey and Certification Group. She is a 2016 recipient of a Consumer Voice Leadership Award from the National Long-Term Care Ombudsman Resource Center.

Related reading
The most vulnerable patients can face greatest barriers to care by James Chin

Posted by Sonya Collins on Nov 17, 2016 1:28 PM America/New_York
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