Keywords: Patient participation, family advocates, nursing homes, communication.
Citation: Smith CK. Participatory care in the nursing home setting. J Participat Med. 2015 Feb 23; 7:e4.
Published: February 23, 2015.
Competing Interests: The author has declared that no competing interests exist.
Over the 65 years of my life, I have noticed significant changes in medical care. As a little girl, my mom accompanied me to my doctor’s appointments. Most conversations regarding my care were with his nurse, Loretta. This doctor delivered me and made house calls when I had chicken pox and scarlet fever. My mom made him a fruitcake every year. He was a good doctor and we rarely asked questions and we always just did exactly as he said.
Over the years, however, my approach to health care has changed. I now go to appointments and ask many questions. Doing internet searches has increased my knowledge about medical issues, which helps me actively participate in my health care, rather than just blindly following doctor’s orders.
This has also made me wonder about patient participation in health care generally, and its potential effect on nursing home care. This is a particular concern for me since I have a disabled son, Jordan, who resides in a nursing home. Are the residents and their families accessing the internet to increase their knowledge about medical issues? What if, for example, a nursing home resident or family member reads about a new medication or, as a result of viewing a government website, have questions regarding the nursing center ratings? Is there an easy way for them to have these questions addressed at that nursing home? Is the staff at the nursing center equipped to modify individual care based on input from its residents and their families? Is patient participation encouraged or discouraged there? If it is encouraged, to whom can the family talk, and how do they go about arranging these discussions? Does this matter involve the administration, the family council, the doctor, the nursing staff, or all of them?
It would be easier to provide this feedback and for participation between the nursing center staff and resident and families to occur if there were websites established to allow direct communication. It would also be helpful if the administration and staff of the nursing center would provide communication tools to residents and families such as newsletters and brochures that describe good medical websites and information about how the nursing home is responding to feedback.
From experience with my son’s care at Greenhurst Nursing Center, I have been able to use care conferences and direct communication with the administration when I have questions, as illustrated by the following examples:
1. I recently noticed that Jordan was putting on too much weight, and it had been reported that he was vomiting in the evenings. I contacted the administration and the nursing director about my concerns. After consulting with the staff dietician, Jordan’s tube feeding rate was decreased. His vomiting has already improved and we expect his weight gain to end.
2. About 3 months ago, I noticed that Jordan had some redness on his wrists and I decided it was related to wearing his arm braces during the day, and rubbing against the sheets when he is turned at night. I talked to the physical therapist and he ordered wrist protectors which Jordan now wears continually. The redness is gone.
3. We noticed that Jordan seemed bloated and uncomfortable during a visit several months ago. We were at Greenhurst to attend a care conference with the nursing staff, administration, and activities director. I told them I was concerned that his bowel program may not be rigorous enough. We began a new, more aggressive program, and Jordan has since been much more comfortable.
4. Jordan has occasional seizures, and if they become continuous, the nurse will give him Diastat (a suppository-based anticonvulsant). I am always thankful that they communicate those events with me. I keep a close eye on how often he has seizures so that I can recommend anticonvulsant medication changes, if needed. As a result of my recommendations several changes have been made over the past few years. While I am comfortable communicating these issues with the administration and staff, I often wonder if other families have the same experience — they should be able to!
Since resident/family participation in health care is becoming more the rule than the exception, my challenge to nursing homes is to design formal ways that make it easier for patients and families to provide feedback. Satisfaction surveys and feedback forms for residents and families would increase participation opportunities. I don’t believe that optimal health outcomes are possible without this participation. I know this because our family has encountered countless examples of how our participation has made a difference in our son Jordan’s care. When it comes to nursing home care, let patients and their families help!
Copyright: © 2015 Constance K. Smith. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.