By Taylor Amstutz, Associate Attorney Taylor Amstutz graduated from Pepperdine Law and is passionate about advocating for vulnerable populations in our community.
Earlier this year, a rogue pajama bottom leg tripped my 84-year-old grandmother, breaking her hip and femur. After one surgery, two hospitalizations and three different skilled nursing facility stays over four weeks, I am happy to report she is finally home. The last several months have not been easy for my family or my Grandma, one of the most fiercely independent people you will ever meet.
After her second hospital stay, Grandma was again released to a SNF that, despite her social worker’s representations to the contrary, was unprepared to care for patients without dementia. At 9:00pm that night, we arrived at the SNF, only to be locked outside in 45 degree temperatures for over 15 minutes.
Once inside, the conditions were much worse. The smell of urine and feces washed over us like a tidal wave and the “separate” wing for patients without dementia was functionally nonexistent. My tiny, five-foot-nothing Grandma had two roommates, one who showed early signs of dementia and another who could not move or speak. In the same hall, male patients roamed around at all hours. The attendant in charge of overseeing her wing fell asleep and didn’t respond when Grandma called for help. She subsequently was diagnosed with a surgery incision infection due to inadequate wound care.
Were it not for the constant visits from my family, relentless check-ins with staff, and endless phone calls to everyone from the nursing home administrator to her social worker, Grandma could have endured several more weeks of discomfort due to incompetency and neglect. Instead, our family was able to have her moved to a clean, more responsive facility within 48 hours. After she was released to go home from the previous facility, the infected wound reopened. Thankfully, my mother noticed it and informed a doctor, who then realized it was a staph infection that had progressed to MRSA.
Today, Grandma is still walking (cane in hand) down the long road to recovery, significantly better because her family was involved in her healthcare transitions. Our experience provided valuable insight into the rights and options available to those in the SNF setting. As an attorney and a granddaughter, I want everyone to know the importance of understanding their rights and using those rights to advocate for themselves or loved ones in a healthcare environment.
Where do My Rights Come From?
In 1987, the Nursing Home Reform Act established basic rights for nursing home residents that are still used today to improve quality of care and of life. Centers for Medicare and Medicaid Services developed a standardized minimum data set for evaluating the quality of life of nursing facility residents.
By 1998, all nursing facilities accepting federal funds, such as Medicare, were using the same standardized data set. While they are far from comprehensive, this means federally funded facilities must meet certain standards to continue receiving funding.
Three Ways to be a More Effective Advocate
Here are three things you need to know if you find yourself or someone you love in a nursing facility:
1 – Know Your Rights: Individuals and loved ones should be familiar with the Resident’s Bill of Rights, established by the Nursing Home Reform Act. Among the many rights provided to residents are the following: privacy, accommodation of medical, physical, psychological and social needs, to be treated with dignity, to exercise self-determination.
Another thing to keep in mind: informed consent gives patients the right to know what is going on with their treatment. Informed consent requires physicians to disclose enough information for patients to make an “informed” decision. Under the court’s decision in Nixdor v. Hicken, physicians must also disclose information that would be important to a reasonable person in the patient’s position. Be engaged in decisions that affect your health and ask questions because it’s your right to know!
POAs, Advance Health Care Directives, & HIPPA
Finally, as a family member, there are several tools you can use to establish your right to advocate on behalf of loved ones: Power of Attorney, Advance Health Care Directive, and HIPAA forms. If your loved one does not have these forms in place or needs to update, the best time to execute is NOT when you already need them. It may be too late at that point.
2 – Know When to Speak Up: If you or your loved one are uncomfortable with the way care is being handled, say something! If you need more information before deciding whether or not the proposed course of action is a good fit, ask questions! Take notes when the assigned doctor comes by for a patient visit. Ask for alternative treatment plans or accommodations. Ask about prescription side effects and request alternatives.
3 – Know Where to Go: The good news is this: if you know where to turn, you won’t be alone in this process. To view SNF reviews, prior issues, and whether or not those issues were corrected, head to Medicare.gov and search by location. The California Advocates for Nursing Home Reform (CANHR) website is another valuable resource with a wealth of information on topics such as choosing the correct care facility. Use your network of friends and family to help check in on your loved one when you cannot be there. Importantly, make sure to take care of yourself while caring for others.
In many cases, adult children do not live close enough to make daily visits a feasible option. When you learn who to talk to, you can be an effective advocate, even from afar. No matter where you are, you can: contact the medical director, talk to the assigned physician, discuss options with social workers, familiarize yourself with staff shift changes, hire a third party case manager, speak to the Ombudsman, and contact an attorney who practices elder law.
While I hope you never find yourself in need of this information, if you do, I hope you will remember it. Speak up for yourself. Speak up for your loved ones. Know your rights.
The day may come where someone else’s wellbeing is up to you. Be prepared.