Discharge Planning: Know Your Rights

When Next Avenue staffer Sabrina Crews' mom, Sharon Collins, underwent surgery to remove a sarcoma on her hip, she was told she would "probably" be able to go home that same day. However, Collins had a bad reaction to the anesthesia and even hours after the procedure, could not fully wake up and communicate.

Credit: Getty

Once Crews was finally allowed in to see her, she immediately knew something wasn't right. Although the nurses said Collins could get dressed and go home, "it was clear she was not alert," said Crews. Her mom never even acknowledged her presence, something totally unlike her. Crews was concerned about her mom's lack of coherence — she could not answer simple questions or understand she was being discharged. Additionally, her mother could not walk and was nauseous.

"They were going to give me a sheet of paper with instructions on how to help my mom learn to walk on crutches." She knew her mom was not ready to even try yet.

Crews feared her mother might fall if she woke up in the middle of the night and tried to get up. She tried to communicate her concerns to the staff, but says she was brushed off. So Crews called her aunt, who immediately came to the facility; she insisted Collins was in no condition to go home, that the family refused to take her, and that Collins must remain overnight.

After that, the tone quickly changed, Crews explained. Suddenly, the urgency to discharge Collins dissipated. Phone calls were made; Collins was transferred to the main hospital. She spent a rough night vomiting and in some pain.

"It was like good cop, bad cop," Crews said. Once the bad cop arrived, everything seemed to go the way it should. "Until then, I didn't feel like anyone there was looking out for my mom's interests."

"This is a very common problem," said Kistein Monkhouse, a nationally-recognized patient advocate and former frontline staffer. Monkhouse is CEO & founder of Patient Orator, a digital startup helping underserved patients close the communication gap with their health care team.

Communications issues between patients and caregiving teams often occur, so it's important for people to know and understand their rights. "It's a highly emotional time and especially if it's an emergency, the urgency is around seeking care, not focusing on your rights as a patient. Then something happens and you're left wondering what to do," Monkhouse said.

Hospitalization can be especially challenging for people impacted by health disparities, whether it's people of color, or LGBTQ+ or women or older adults, according to Monkhouse. Insurance is a huge driver of early discharge, and in fairness, she said, hospitals don't want patients to acquire any infections while there, so going home is often a safer option.

However, if a person in the hospital cannot perform what's known as "activities of daily living" such as getting to the bathroom on their own, getting dressed, eating independently or taking care of personal hygiene, it's probably too soon.

As someone who has been on the front lines, Monkhouse noted it's important the person be able to stand up on their own without being afraid of falling. Often, it's the family caregiver who must step in during the discharge planning process, especially if the patient cannot advocate strongly on their own behalf.

Good discharge planning for patients, their families and their care providers means more successful transitions from one care setting to another, according to the United Hospital Foundation. Medicare-participating hospitals must deliver valid, written notice, which explains a patient's rights as a hospital patient, including discharge appeal rights.

This notice should be provided around the time of admission, or within two days of entering a facility. Additionally 40 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands, have or will soon implement the Caregiver Advise, Record, Enable (CARE) Act, a model state law developed by AARP to help family caregivers as their loved ones transition from hospital to home. The CARE Act requires hospitals to:

• Record the name of the family caregiver on the medical record of the loved one.
• Inform the family caregivers when their loved one is to be discharged.
• Provide the family caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home.

A discharge plan should be provided in writing, according to the Center for Medicare Advocacy. It should include

• where and how a patient will get care after discharge;
• what the patient and his or her support groups (family, friends, hired help) can do to facilitate recovery;
• particular health care problems that might occur in the new care setting;
• clear explanations about medications going into the new care setting;
• arranging for necessary equipment or supplies in preparation for activities of daily living;
• resources available to help cope with and manage the illness or condition; and
• available resources to help with care-related costs

Hospitals are also required to display a Patient Bill of Rights. Many people are unaware of this document or understand these rights, Monkhouse said.

For example, you have the right to speak with a patient representative if you run into issues, she explained. These are in-house advocates with a direct line to clinical and administrative staff. They act as a liaison between patients, the care team and the facility.

Some people are reluctant to ask questions or push back — especially if language is a barrier, according to Monkhouse. Even with a translator, the patient may not feel comfortable sharing intimate information with a stranger or in front of another family member. Race, socio-economics, and other social determinants of health can also make people hesitate to speak up for themselves, she said. Often, these are people who have not had good prior experiences with the health system.

COVID-19 has only made discharge planning and care transitions that much more challenging. Some facilities may not allow family members in at all, or at best, only one designated person may be permitted to visit. And, that person may not be the ideal advocate. 

Crews just did not feel comfortable pushing back hard against the surgeon's discharge order. "I was under a lot of emotional stress already." Seeing her mother incapacitated and so vulnerable, "I didn't want to have to tap into the part of me that needed to be confrontational. I felt like I didn't have that in me." She understood her mom needed a more forceful advocate and was fortunate her aunt was up to the task.

If you or a family member find yourself in a similar scenario, Monkhouse advises: 

• Designate a health care proxy — someone who can make health care decisions on your behalf if you are unable to communicate your wishes.
• Give your designated person access to your patient portal, which will allow them to review your health information and communicate directly with the medical team.
• Before hospitalization (if elective), ask about a discharge plan and review with the physician or staff. Flag any specific issues, such as not having support at home, or needing transportation to follow up appointments.
• Don’t be afraid to ask questions, especially if you’re not clear about any treatment or service. It will help you get the best care possible.
• If your needs are not being met, you or your designee should contact your health insurer and see what other services (such as additional home care, therapy, transportation, meal delivery) may be available.
• Document everything, in case there are discrepancies or insurance issues down the road.
• Know and understand your rights — while federal guidelines exist, they can vary somewhat depending on the state you live in.
• If unsure or unsatisfied, seek out an advocate — a patient representative, social worker or care coordinator.
• Keep lines of communication open with your care team — voice your concerns or issues.

While Crews is glad she and her aunt were there to advocate for her mom, she wonders "what do people do who are solo agers, what do those who don't have anyone, do?"

The Center for Medicare Advocacy guide for Medicare beneficiaries details your rights concerning discharge from a hospital, skilled nursing or other health setting, and what to do if you or your caregiver, don't think you're ready to go home.

The United Hospital Foundation offers a downloadable guide for patients and family caregivers in multiple languages.

Liz Seegert New York-based journalist Liz Seegert has spent more than 30 years reporting and writing about health and general news topics for print, digital and broadcast media. Her primary beats currently include aging, boomers, social determinants of health and health policy. She is topic editor on aging for the Association of Health Care Journalists. Her work has appeared in numerous media outlets, including Consumer Reports, AARP.com, Medical Economics, The Los Angeles Times and The Hartford Courant.  Read More