Before the COVID-19 pandemic, it was challenging for family members or loved ones of a hospitalized patient to communicate with healthcare providers to understand the current diagnosis of that loved one.
During this COVID-19 pandemic, it has become even more important for families to know the right questions to ask and how to connect with the right health provider who can answer them. How is this possible when loved ones are not permitted into the hospital?
This is where the role of a private healthcare advocate, who knows the questions to ask and who to ask, becomes increasingly important. Frequently, these individuals are experienced nurses who are true "insiders" to the healthcare system and can be instrumental in assisting families. Physicians appreciate the expertise of a nurse advocate as they can communicate and understand quickly. The advocate then can spend the additional time needed to support the family in understanding the medical details and treatment plans.
Pre-COVID-19, family members were able to wait in the hospital room until all of the healthcare providers assembled to provide an update, understand test results, and the medical plan of care. This all changed with the onset of COVID-19. In-person communication came to a screeching halt.
Consider this New Jersey example. An 85-year old gentleman in an acute care setting was ready for discharge. He did not have COVID-19. He was not able to return home due to worsening dementia. He needed a long-care facility to care for him going forward. The hospital wanted to discharge him. The family didn't feel ready. COVID-19 was upon us and facilities were starting to restrict all visitors, but were still accepting patients.
The family hired a nurse healthcare advocate who immediately contacted the social worker at the hospital to request more time to select a facility of their choice. Oftentimes, families are suggested to go to the facility with the first bed available. Advocates know that more time is needed to pick the right facility and ensures their clients have that option.
The advocate and the family quickly reviewed options in the location that the family chose. There were Medicare ratings to review and questions to be answered about the facility as well as financial contracts to review. The family was distraught that they were unable to visit the facilities. Advocates have good relationships in the senior living community. The advocate arranged for a video tour so the family could view the facility and set up a conference call with the management at the facility to discuss their questions and concerns. Communication in these highly emotional times is ordinarily challenging but during COVID-19, it became unprecedented.
The family continued to struggle to choose a facility and was having challenges obtaining legal and financial advice in this tight schedule. The clock was ticking so the advocate suggested they select the facility they liked the most and to request a respite stay. This option is not always known by families and not suggested by social workers. This allows the family to commit only to a 30-day stay, which gave this family time to get their financial and legal matters in place. That is the option they chose and Dad was transferred to that facility.
A professional advocate can effectively integrate with the entire healthcare team to ensure all medical information is obtained and understood. During COVID-19, these communication skills were challenged, even for an advocate, because of not being able to be at the hospital to obtain the needed information.
A somewhat frantic call from a daughter of a COVID-19 60-year old victim came to an advocate. The gentleman had been hospitalized for more than two weeks and the family was scared. They wanted an advocate to help. Normally, it is relatively easy to get the required HIPAA form entered into the patient’s chart, granting the advocate permission to speak to the team. Now, with COVID-19, this required some creative communication.
The family thought they could send the physical HIPAA form along with the food package they left at the front desk to be delivered to Dad. The social worker was contacted to request her assistance. She effectively faxed the form to the nurse, who was able to get the client to sign the form. The advocate advised the family to set up a hospital patient portal account so test results could be monitored and discussed with the hospitalist. The medical condition of this patient started to improve and continued to improve to the point of discharge a week later to home. The family was assisted in that transition to ensure further support services were in place for continued healing.
Communication in this case was also challenged as the patient spoke mostly Spanish and very little English. The patient was still on high dose oxygen therapy, so it was very difficult to communicate. The advocate spoke with the staff to ensure the Spanish speaking staff could assist. Communication during this pandemic was difficult as nurses needed to practice "bundled care". This means they did as much care on one visit with a patient to reduce their visits into the room to minimize exposure.
In this case, families were limited to one phone call per shift (there are 2/day) to the nurse and one call to the hospitalist. That was changed to one call per day when the unit got increasingly busy. Imagine, not seeing your loved one and only getting a “report” from the nurse and hospitalist once a day. Luckily, this gentleman was able to Facetime with his family for short periods and was slowly improving.
If you thought communication was challenging in these prior cases, it was even more difficult and frightening for the family of this loved one in New Jersey who was on a ventilator in an ICU. A synopsis of an ICU’s nurse’s summary of communication challenges in the ICU included:
Due to heavy sedation and the use of paralytics in ventilator patients, it made it difficult to pause sedation to the point where the patient could follow commands or understand what was being said. Nurse’s continued to speak to them regardless.
The nurse would do many Zoom calls with family members via an iPad to allow connection to the family.
It was still so difficult for families to understand what was going on as treatments changed rapidly and were highly technical.
At the end of life or goals of care discussions, families were allowed to come in and see their loved ones from outside the room.
Communication was further challenged by the use of PPE and nurses having to bundle care which means limiting their time in the room and doing several tasks at once.
The nurses use a patient communication chart with pictures and words that the patient can point to in order to communicate. Often, they can provide a pen and paper to the patient, but this is challenged because of the inability to back off sedation and paralytics long enough to allow for this communication process.
Some facilities Communication Liaison Team dedicated to calling families to report their loved one’s status and receive calls
A major shift in obtaining medical care outside of the hospital occurred with the sudden use of telemedicine. This posed very challenging technical issues with the senior population who generally are not tech-savvy and were in isolation. Here again, the advocate assisted seniors by working with the doctor's office and the senior and the home aide to set up the telemedicine visit. The advocate participated in the call to provide support and to assist in asking questions and taking notes. It is noteworthy, that there was a significant decrease in people seeking care for ailments other than COVID-19. Doctor’s noticed a significant decrease in heart and stroke events. However, paramedics reported a significant rise in 911 calls and serious health events.
During these COVID-19 times, one needed to have exemplary communication skills in order to advocate for their loved one. This is due to the visitation restrictions, the acuity of the situation, and stress on both the family's side and the care provider's side. If the family was overwhelmed, a healthcare advocate is uniquely qualified and trained to become the central voice for the patient and their family during these times of medical crises.