Breaking the Silence: Family Advocacy in the face of Hospital Restrictions

Empowering Relatives to Challenge Unsafe Discharges and Protect Vulnerable Patients

During the height of the COVID-19 pandemic, Sarah’s world was turned upside down when her sister, Emily who lived in Florida, was found unconscious on her patio. Rushed to the hospital, Emily was admitted under strict lockdown protocols, cutting off her family from any updates about her condition. Despite desperate calls and pleas for information, the hospital refused to disclose anything, even to her children, citing patient privacy laws.

Days turned into weeks, and Sarah, who lived in Houston over 1,000 miles away, was left in the dark. The stress of not knowing whether her sister was improving or deteriorating was unbearable. Emily had not been diagnosed with COVID-19, but the hospital’s silence left the family feeling helpless. 

Then, without warning, the hospital discharged Emily. No one informed Sarah or Emily’s children. They found out only when Emily, confused and disoriented, called them from home. Shocked that such a vulnerable patient had been released with no support, Sarah tried to intervene—but before she could find out what kind of care her sister needed, Emily ended up back in the hospital.

This cycle repeated itself. Each time, the hospital refused to share information, and each time, Emily was discharged without notifying her family. The toll on Sarah, their 90 year old mother, and Emily’s children was crushing. Every phone call to the hospital ended in frustration, every day was filled with uncertainty, and every discharge felt like a ticking time bomb.

My name is Glena, and I was Sarah’s mother’s caregiver and stood by both of them. Due to my years of caring for elders and knowing a little about how the system worked, I offering guidance and emotional support to her and her family through the ordeal. I had seen the exhaustion on Sarah’s face, the sleepless nights spent worrying, the mounting frustration. The third (or fourth time) Emily was hospitalized, a family friend, went to check on her and found her confused and unsteady. She called for an ambulance. The EMS refused to take Emily to the hospital because she was refusing to go. The friend, who is a nurse, said that she would report them if they did not take her because her blood pressure and other symptoms required them to take Emily. The diagnosis yet again was not disclosed to the family until much later they discovered she had had a heart attack and pneumonia. Emily had been discharged only a few days prior to this latest incident. 

Through research, and friends in the hospital system, they discovered a critical term: “unsafe discharge.” Hospitals are required to ensure a safe environment for released patients. When Sarah used that phrase, “unsafe discharge” it suddenly opened up communication with the hospital. The administrator who was previously unavailable every time  Sarah called decided to return Sarah’s calls. Finally, a social worker was assigned to Emily’s case.

It was at this point, about 9 months later, that they found out the diagnosis from the first hospitalization. Emily had ingested a dangerous mix of pills and alcohol, resulting in a diagnosis of Korsakoff's syndrome—a debilitating memory disorder. Despite the severity of her condition, the hospital discharged Emily to go home alone without notifying her family. It only raised more questions that no one at the hospital was willing to answer.

Suddenly, the hospital acknowledged that Emily was not of a sound mind and needed to be placed in a nursing home. There was one problem, Emily refused and wanted to be released to go home. No one in her family had the power of attorney to be able to help her get the care she needed.

Sarah called Emily to talk with her about granting power of attorney to her children. Emily was delusional and refused to assign it to her children or Sarah saying that they just wanted to steal all her money.

During the call, her mother, crying and desperate, appealed to me, Glena, her care giver and a friend of Emily's to talk to her. I talked with Emily explaining that my brother had been in the same position as she is in now. He refused help from the family and ended up losing his house and was homeless for over 20 years. I think she finally understood the gravity of her situation and she agreed to sign the document. This allowed her children to make decisions about her care and secure her a place in a nursing facility where she would receive the treatment she desperately needed.

After a year of fighting the system, Sarah’s battle for her sister finally came to an end. The experience left deep emotional scars—chronic stress, fear, frustration, exhaustion and feeling of helplessness all could have been avoided if the hospital had simply communicated with the family and helped them find a solution for Emily's care.

Guidance for Families Facing Similar Challenges:

Understand Patient Rights and Hospital Obligations:

Hospitals are required to provide patients with a comprehensive discharge plan. Familiarize yourself with these protocols to ensure your loved one's safety. medicareadvocacy.org

Utilize Technology to Maintain Communication:

Even amidst visitation restrictions, leverage phone calls, texts, or video chats to stay connected. Regular communication can provide emotional support and keep you informed. blog.mercy.com

Engage Hospital Staff Proactively:

Build relationships with nurses and attending physicians. Express your concerns and ask pertinent questions to stay informed about your loved one's condition. vnshealth.org

Involve Social Workers and Patient Advocates:

These professionals can navigate complex healthcare systems and advocate for the patient's best interests, especially when family members face communication barriers.

Establish Legal Authority When Necessary:

Encourage your loved one to designate a power of attorney. This legal step ensures that family members can make informed decisions and access essential medical information.

Document All Interactions:

Keep detailed records of communications with healthcare providers. This documentation can be crucial if disputes arise regarding the patient's care or discharge plans.

Know the Term "Unsafe Discharge":

If a discharge plan seems premature or inadequately prepared, voicing concerns about an "unsafe discharge" can prompt a hospital to reevaluate the decision, ensuring the patient's well-being is prioritized.

The isolation imposed by COVID-19 protocols has undeniably strained the relationship between patients, families, and healthcare providers. However, by staying informed, assertively communicating, and seeking legal and professional support, families can advocate effectively for their loved ones, ensuring they receive the care and attention they deserve.

This is a true story and the names of the people involved were changed to protect their identity.

Article by: Glena Stephenson

Glena has been in the caregiving industry for over 15 years, serving as a nanny, a childcare worker in a psychiatric unit for teens, and a caregiver for both a 96-year-old man and an 88-year-old woman. Her passion is helping people stay healthy and informed, especially when it comes to navigating the often overwhelming and sometimes hostile healthcare system. Through this newsletter, she shares valuable insights, resources, and real-life experiences to empower families in advocating for their loved ones. Stay informed—because knowledge is the most powerful tool in securing the care you and your family deserve.

Q/A Question of the Week

Q: How important is socialization for the overall health and well-being of elders?

A: - Socialization is extremely important for elders as it can help reduce feelings of isolation and loneliness, improve mental well-being, and even boost physical health by encouraging regular social activities.

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Feb 20, 2025 The Mel Robbins Podcast

In this episode, you will learn how to make healthy living unbelievably easy. Today, Dr. Rangan Chatterjee is distilling over 20 years of experience and thousands of patient success stories into just four key steps to a happier and healthier life.

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Today, he will simplify the overwhelming topic of health and empower you to trust what feels good for your body. He is going to share practical and actionable tools you can incorporate into your life, starting today, including a simple 5-minute workout you can do in your kitchen and a proven framework to help you stop cravings and stay in control.

 Whether you want to cut back on sugar, sleep better, move more, boost your energy, or reduce stress, this episode has everything you need to start feeling better today.

And stick around until the end of this episode because Dr. Chatterjee is talking openly about the stress that comes with caregiving: whether it’s for aging parents, a partner, your kids, or even yourself.

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The article discusses the importance of patient documents in the healthcare industry. The documents provided can me modified to specific medications or care that you want to instruct hospital or caregiving facilites to honor your wishes. It is your right to advocate for your health.

It emphasizes the need for accurate and up-to-date medical records to ensure that healthcare providers have all the necessary information to provide the best care for patients.

The article also highlights the benefits of electronic health records in improving efficiency and communication within the healthcare system.

Additionally, it explores the challenges and risks associated with managing patient documents, such as maintaining confidentiality and complying with privacy regulations.

Overall, the article underscores the significance of proper document management in delivering quality healthcare services.

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