Standing Up For My Sister

Illustration by Brett Ryder

My fifty-five-year-old sister requested that we have a fun day before her open-heart surgery. Getting her nose swabbed after sitting in a line of cars wasn’t exactly a fun start. She and my mom had forgotten to attend a scheduled COVID-19 test the day before. When you are a person with intellectual disability and your seventy-nine-year-old primary caregiver has cognitive impairment, mix-ups happen. I was what researchers would call Megan’s “secondary caregiver.” I was also one of those researchers. I had arrived from out of town to be one of Megan’s two allowed hospital visitors—I would help process information for my family and advocate for my sister.

I was also my sister’s driver. Megan (pronounced Meegan) usually got around by city bus. After the COVID-19 test, we went to Old Navy, her favorite store, where we found matching tie-dyed sweatshirts. We took a selfie in the store mirror, with me standing a foot taller than her. Megan had Russell-Silver syndrome, and I had been taller than her since I was one and she was two. “Text it to me so I can post it,” she said.

We next hit the Taco Time drive-through and parked to eat in the car. Megan was nervous. She was not a big talker and didn’t have a lot to say that day. She gave me few updates from Facebook. The constant pinging of notifications was an everyday feature of hanging out with her.

The Whiteboard

It was a grim two-hour ride up the freeway the next morning to check Megan in to the hospital. It was still hard to believe that a routine heart check to get Megan approved for the state’s kidney transplant list had started a cascade of medical care, revealing nearly complete blockage in three of her coronary arteries and a barely functioning aortic valve. No wonder Megan was often winded, tired, and cold. My mom was skeptical that a kidney transplant was a good idea, observing that Megan had made friends in the dialysis clinic. Such thinking illustrated my mom’s own cognitive changes, as five years ago she would have understood the benefits of a kidney transplant over lifelong dialysis. Megan was steely when saying goodbye, accepting my side hug, likely relieved to be rid of her fretting mom and little sister.

Surgery went OK, although it took three hours longer than expected because of the anesthesia team having trouble accessing her “tiny veins.” They knew how tiny she was before they started, so that news seemed bad. I was a ball of worry and only felt better when Megan gave me a thumbs up that night, on my first visit to her hospital room.

Megan was extubated the next morning and brushed her teeth with the nurse’s help. Patients were limited to one visitor at a time, so we developed a pattern in which Mom visited first and I would go next, leaving Mom reading in the lobby. I was so happy to see Megan with just an oxygen mask and no tube. She whispered “Phone” so that I could check Facebook for her. She loved hearing all the well wishes from cousins and friends. With each message she turned her head to the side and smiled, making me repeat certain special messages. She had me post a new update.

One short day later the intensivist called my mom and told her that Megan had sepsis and they were going to likely have to intubate her again, as she was not breathing well. My mom was confused and immediately passed the telephone to me, and the team repeated the information. This was not good news, to say the least.

A few hours later, we learned that they could not avoid intubating Megan again. I visited that afternoon and held her hand, rubbed her size-one feet to warm them up, and watched her struggle for each breath. I stood by her bed for hours. I told her about the latest song her nephew wrote, “Hurricane Warning,” and asked whether she wanted to hear it. She nodded, so I put the AirPods in her ears. She gave me another thumbs up. When the dialysis machine arrived, the nurses asked me to leave. One of them pointed to the whiteboard in the room, where it said “Family” and had my mom’s name and telephone number. She told me that they would update us with any changes. I asked her to add my number, too, and to call me if the topics were complicated so that I could interpret the information to my mom.

Later that night the new shift nurse said that I could visit and updated me on how Megan was doing. Then she asked, “Do I understand that Megan is nonverbal?”

“Uh, no,” I replied. “She has intellectual disability, but she lives in her own apartment.”

I did not feel the need to mention her filthy microwave or the litter box that remained in the bathroom even though her cat died two years ago. Before leaving her apartment, Megan had ordered, “Do NOT let Dad come clean my apartment!” Nothing riled her up like my parents cleaning her apartment without her consent. “I will not,” I had said. “I promise.”

Was she listed as nonverbal in her chart?

This had to change. Megan was an adored auntie who never missed a wedding, first communion, or baby shower. She knew the birthdays and names of the children of even second and third cousins. Until an early pandemic layoff, she worked in the kitchen at an assisted living facility and was friends with many residents. The next day I asked whether I could write with the dry-erase pen on the whiteboard on the wall. I wrote:

I could have added her love of the British royals, but it was difficult to explain just how real celebrities were to Megan. Her sobbing telephone call when Princess Diana died made me think a family member had died. She loved the Roloffs in “Little People, Big World” and was right there with them as they faced challenges. Megan loved her Facebook friends, cheering them through addiction, recovery, and divorce, including classmates who had excluded her as a teenager. Megan annually announced on Facebook her birthday party at the local tavern, with me silently fretting that no one would come. She brushed it off when almost no one did. She did not judge the no-shows.

With the information I wrote on that wall as prompts, the nurses began to talk to Megan about their pets and other items on the list. These conversations had a dual impact: They helped the nurses gauge Megan’s alertness and responsiveness, and they reassured my mother and me, who desperately needed her providers to know how much we treasured Megan. Our (magical?) thinking was that if they viewed Megan as a richly complex person, they would try even harder to keep her alive.

Yet although the whiteboard facts provoked conversation, they did not help me get my questions answered by providers. One of the senior heart surgeons came by and said to me, “Oh, are you the sister? Did you write this all down on the wall? I just love this. So great.” And walked quickly away. I really wanted him to stay so I could ask: “What are her chances? Tell me how I can best help look for danger signs. She is breathing so heavily, and the tube has been in for too long.”

With every visit I looked around to find Megan’s glasses and put them on her. I asked each nurse, “Could you please make sure she has on her glasses?” It felt especially important when the team began lightening sedation to try to extubate her—seeing well could help her emerge. I also asked repeatedly whether they could find a smaller gown. Her gown gaped, and the socks slid off her tiny feet.

Recovering

After nine days of intubation, Megan no longer had sepsis. I was amazed; I had been bracing myself for her death, given that three of her major organs—heart, lungs, and kidneys—were compromised. My mom remained in denial this whole time, focusing on warm blankets for Megan during dialysis and thrift store shopping for treasures when not at the hospital.

When she first got the tube out, Megan could only talk in a whisper. She was upset, and I couldn’t decipher why. She finally was able to tell me that she missed Dad. He was at home, two hours away, eagerly awaiting our twice-daily telephone updates and, we hoped, reading his email to reinforce the same information we relayed by telephone. His dementia robbed him of the comfort (and terror) of our frequent updates, making communication a challenge. I dialed him immediately. Megan heard his voice and whispered, “I love you, Dad.” He told her he loved her too, and she became calm.

As Megan’s voice started recovering and she started talking to me, she relayed that a marching band was performing on the ceiling and that the drums were very loud. “Can you see the band?”

She also kept smiling and waving someone into her room, saying, “Oh, why won’t she come in?” She thought our five-year-old niece was in the hall, confused by a nurse with a blond ponytail.

“She seems to be hallucinating,” I told the intensivist when he came by that afternoon. His response: “Oh wow, I did not know that. She didn’t say anything to me.”

Megan wouldn’t have—she only ever told providers that she was “fine” when asked.

She fully trusted her providers. I was the only one to question them. One day I had asked the dialysis nurse, “Why is the dialysis machine here? She had dialysis yesterday.” Another day, I asked the nephrologist who was attending, “What do you mean she got general anesthesia to check the dialysis port? I was told it would be light sedation.”

I was worried that being delirious and seeing hallucinations was going to keep her from walking safely, and Megan’s providers had told me that walking was the only way for her to clear her lungs and recover.

I described the marching band scene to the intensivist, and he said, “I will look at her medication mix with that in mind. We want to reduce any delirium.”

I represented Megan as best I could. I was adamant that she begin walking, asking each day when physical therapists would arrive. I knew of the importance of hospital mobility from my research collaborations; a close collaborator and friend had shown that twenty minutes of walking a day increased the chance of a home discharge.

I learned that basic things affect both a patient’s dignity and the quality of care. Finding Megan pajamas that fit took more than two weeks. Lisa, one of her nurses, finally got her clothes from the children’s hospital. We loved Lisa. She talked directly to Megan and explained things plainly. It helped that she was a goat farmer and that Megan loved seeing adorable goat photos. Megan accepted Lisa’s walks more readily than walks with other nurses, and she posed for a photo in her new pajamas and fitted socks, smiling wide and holding her walker, ready to launch. Isn’t it obvious that hospital clothes that fit make it much easier to walk?

Preparing For Home

One glorious afternoon, another of Megan’s intensive care unit (ICU) nurses turned her chair to face a big sunny picture window. I arrived to her gazing out at the birds. We sat together and avoided seeing all the machines for a while. A few days later, Megan pulled her hand away when I held it. I was excited that she did so. She loved proximity to family, but had never been wild about physical contact, so I knew that she was feeling better. We learned that Megan would be moved from the cardiac ICU to a medical unit, with less intensive nursing-level care and hospitalist physicians compared with the one-to-one nursing staffing and intensivist physicians in the ICU. I decided to return home for a bit, and our beloved cousin Tracy stepped in as Megan’s second visitor. Megan told me that it was OK to go, as long as I came back when it was time for her to get out.

After four days on the medical floor, while Megan continued walking and improving, I caught up with her case manager by telephone. She told me that Megan was doing so well that she would be discharged home, as she no longer met the criteria for postacute facility care. The hospital did not understand Megan’s reality. I protested, because I did not feel that my parents would be able to handle caring for her in their home.

I started looking at flights.

That afternoon I was told that Megan was pretty quiet and not interested in watching television and that when my cousin was visiting, Megan said “Ow,” and then “Ow” again. My cousin called the nurse, and she gave Megan pain medication that seemed to help. Megan told my mom later that evening that something hurt in her torso, but she couldn’t explain exactly where. Mom said that Megan seemed better when she left the hospital that evening with a hug, telling her she would see her in the morning.

Megan died at 11 p.m. that night, on her twenty-first day in the hospital.

Shocked

There was no circling back to the secondary caregiver—me—with my sister’s sudden death. No one from the hospital called to tell me that she had died, much less what had caused her death. My parents and brother each assumed that the other had told me the news, but no one had—another complication of my parents’ cognitive decline—and my brother was focused on driving my dad the two hours to the hospital. I ultimately learned the news from my cousin the next day. My family’s oversight filled me temporarily with rage and hurt. But I also understood that it was a mistake, and even in my shock, I understood the structural reasons for my invisibility. I ceased to exist to the health system when that whiteboard was erased.

My parents did not ask for an autopsy, and they did not see Megan again. My mom did not want to see her dead without my dad, and she did not know how to navigate getting him into the room, so she gave the hospital permission to move Megan to a funeral home. My mom remained in shock and kept asking me how Megan could have died when the hospital staff had just been teaching her how to care for Megan at home.

I requested a meeting with my sister’s heart surgeon to try to get answers for my parents. Less than a week after Megan’s death and just a few days before her funeral, my parents and I sat in their dining room and listened on speaker phone as the heart surgeon read the detailed chronology of that night’s events from the electronic health record (EHR) notes. He explained that he thought that her death resulted from a mucus plug dislodging from her lungs, making her heart stop. The providers could not get her heart restarted, despite trying multiple times. He explained that her lungs had not cleared postsepsis. Through their tears, my parents asked the universal question: Did she suffer?

I had other questions. If her nurses, my mom, and I had walked with her more, could her lungs have cleared and prevented her death? What if she had stayed in the ICU instead of moving to the medical floor, given her inability to advocate for herself and her need for more oversight? These questions, like my parents’ question on suffering, did not have answers.

Integrating Caregivers

When I think of my sister’s final hospital stay, I am grateful for the times I had by her side, trying to make her feel less alone, trying to advocate for her. But I regret that I was not able to be even more a part of her care team. Integrating caregivers into the health care team could confer benefits to patients, families, and even health systems. Systems could benefit because caregiver interactions with the team likely affect the quality of care and patient outcomes. This seems particularly true in the case of patients with intellectual disabilities, such as my sister. Today health systems fail to recognize how essential caregivers are to providing the best care. Persistent challenges in communicating with family members are evidence of this failure.

In acute care settings, it is sometimes critical to reach caregivers quickly, and yet modern patient EHRs have no standard place to fill in a primary caregiver’s information, much less a secondary caregiver’s. Standardized caregiver fields in the patient record could provide a basic first step toward integrating caregivers into the health care team. Ideally, such fields would specify the role. For example, “next of kin” might be the legal decision maker, but someone else might be the patient’s best “point of contact” for information sharing. Many times a patient is supported by a rich network of caregivers, and failure to take the time to understand and record their roles can mean poor communication and loss of the benefits of caregiver integration to the patient’s care. Standardized caregiver fields in patient records do exist on a small scale, such as for advance care planning, with up to three roles specified. But most health systems rely on family contact information on whiteboards, which is an inefficient and faulty system.

It is clear from talking to providers that complex caregiver and family networks and dynamics pose challenges. It would be frustrating to take time to explain changes in status to a crying mom and then have to repeat that same information to the adult sister. What if the team had just called me first each time?

Health care is not set up for efficient information exchange with families. Caregivers often are not visiting when morning rounds occur at a patient’s bedside. What if I had been given a chance to attend morning rounds via telephone to tell the team how I thought she was doing, ask any questions, and hear their updates? I had intimate knowledge of Megan’s usual functioning, and I also could learn from the team about the day’s plan of care. “Virtual huddles” like this could ultimately save providers’ time by offering a regular time to interact.

For system change, caregivers need tools to be well integrated into the health care team. We need to know what information is valuable to the time-constrained team. Using forms with simple prompts—“Does your loved one seem worse today?” or “What are you noticing that we should know?”—could help caregivers prioritize communicating information that is vital to treatment planning. Also needed are tools to prioritize how to best partner with the team. Simple instructions aligned with treatment goals could be reiterated by every shift nurse, such as, “Your sister should get up and walk at least twice today, for ten minutes each time.” Knowing even one thing that caregivers can do and why it is important would also help form a therapeutic alliance and a sense that everyone has the same goals. One thing I do know is that complicated family situations are practically the rule, not the exception, and should not be the reason that health systems get a “pass” instead of striving for necessary improvements.

Some health systems have begun to formally integrate caregivers into the team and have encouraged culture change by training providers to recognize and then engage in interactions that embody inclusive care. Specifically, as part of its Campaign for Inclusive Care, the Veterans Health Administration partnered with the Elizabeth Dole Foundation to develop and deploy a training curriculum to more than 5,000 providers nationally. So far, provider training has focused on the outpatient setting, but the training could be adapted and deployed in inpatient settings as well.

Integrating caregivers into the health care team could help reduce distress when there is an unexpected patient death. Care models that extend empathy and closure to families should be the standard of care when an inpatient unexpectedly dies. Such models would need to account for the reality that many providers will change during a patient’s episode of care, such that caregivers and providers who have worked together will not necessarily have an opportunity for closure when there is an unexpected death. A virtual huddle could help both providers and families. A final huddle after Megan’s unexpected death could have let me express both my thanks and my concerns to the team.

I can’t stop wondering how Megan’s identity as an intellectually disabled adult affected the quality of her care. Many small things happened, and I do not know how they all added up. Among the most unprotected of patients, she could not advocate for herself. If caregivers are not included in the team to report preferences, usual behaviors, and other changes that only we may notice, how can high-quality care be provided to the 6.5 million people in the US with intellectual disability?

Patients and families bear the cost of this haphazard approach. To minimize risks, health systems need to change to systematically include caregivers as contributing members of the health care team. Systematic change must also recognize that patients incur higher risks based on class, the health literacy of the caregiver, and systemic racism. And solutions need to take into account that up to one-quarter of patients do not have a caregiver and will need representation.

Health systems should prioritize caregiver inclusion efforts for patients like my sister and the millions of other patients with cognitive and communication challenges.

As a start, health systems should prioritize caregiver inclusion efforts for patients who have difficulty representing their own preferences and needs—people like my sister and the millions of other patients with cognitive and communication challenges. Health systems also should ensure that families know that it is unlawful to discriminate against people with disabilities, including intellectual disabilities, when health care teams make decisions about health care treatment. Treatment decisions must be based on the best objective medical evidence, without making assumptions about quality or value of life. The stakes feel incredibly high to families desperate for providers to recognize their family member as a person of value; knowing about this legal protection could be empowering.

The morning of Megan’s presurgery COVID-19 test, waiting in a line of idling cars, Megan rolled down the window to look out. She said, “Listen to the birds chirping. There is Gran, that one is Popo, there is Grandma, Grandpa, and Uncle Jerry.” I was stunned. I didn’t know this was how my sister thought of loved ones who had died. At first I didn’t know what to say.

“Aw, I like that idea, Mugz,” I finally replied.

I don’t believe she is with our ancestors now, but maybe she thought she might be someday. I wish I had said, “I am going to do everything I can to do right by you, Megan.” The work—to do right by my sister and better include caregivers as valued health care team members—isn’t finished yet.