older woman laying in a bed with a younger woman holding her hand

Bioethics Forum Essay

I Was Never “Just” a Visitor

Caregivers are not visitors. This powerful statement is the title of a  recent editorial in the Journal of the American College of Emergency Physicians  that commented on a study of hospital and emergency department visitor restrictions during the pandemic and their impact on patients with cognitive and physical impairments and those receiving end-of-life care. Using a nationally representative random sample of 352 hospitals and emergency departments during the first wave of the pandemic, the study showed that 93% of hospitals had hospital-wide visitor policies and 47% had emergency department-specific policies. Only about one-third of these policies made exceptions for patients with cognitive and physical impairments, and 58% for those receiving end-of-life care. These results underscore a painful reality: visitor restriction policies adopted to minimize Covid-19 exposure undermined care for many of our most vulnerable patients by excluding their caregivers.

Like caregivers who have received support through the Caregivers Clinic at Memorial Sloan Kettering Cancer Center, a program I began in 2011, and like the 53 million American caregivers in the United States today, I played a key role on my dad’s treatment team.

From 2011 to 2019, I spent approximately 321 days by my dad’s side in emergency departments and hospitals, serving as his eyes, ears, and voice while he lay on stretchers, often unable to communicate or advocate for himself. My dad had Lewy body dementia, a progressive neurodegenerative disease that can lead to fluctuations in consciousness. For him, these fluctuations meant visual and auditory hallucinations that were disturbing and often accompanied by life-threatening changes, like sudden drops in blood pressure or temperature. One moment we would be discussing a piece of classical music and the next he would be unable to focus, distracted by a false perception of three men standing by his bed about to attack.

 His Lewy body dementia was diagnosed after an antipsychotic medication used to treat delirium put him into a coma. When he emerged, he was a bedbound, deconditioned, frail version of the dad I knew, reliant on others for help with all activities of daily living. He eventually recovered and we got his disease under control to the point that he could enjoy days, weeks, and even months without significant impairment, but Lewy body dementia meant additional neurological changes that made him susceptible to infections requiring hospitalization.

On most occasions when we arrived at the emergency department, he was unable to communicate with the health care team without me by his side. In addition to being his surrogate communicator and decision-maker, I was also his most available aide, assisting him with eating and drinking and helping him to turn from one side of the stretcher to another to prevent bedsores. I remained on high alert for adverse events, urging staff to change diapers to prevent infections, consulting about drug side effects I had witnessed firsthand, and, once, identifying the signs of an oncoming seizure and helping him to receive timely intervention. And, undoubtedly, I provided emotional support. I was his lifeline.

Had I not been there, the health care team would have likely relied on age-related assumptions to determine what care was appropriate. Without me by his side to share his health history and—perhaps more importantly—convey who my dad was in terms of his drive for life and goals for whatever time he had remaining, there was no way for anyone to know him, let alone provide him with person-centered, value-driven care. My absence would have meant the possibility of immediate and sustained assaults on his dignity. In fact, had I not been there, I’m certain he would have died in 2011, and likely alone.

Since long before the pandemic, emergency departments have been congested settings with constantly changing shifts of doctors and nurses. Depending on when patients arrive and the nature of their ailments, they can be seen by upwards of five rounding teams. Just one handoff between the day and night teams poses a risk for miscommunication and mistakes. It was a regular occurrence during shift changes for me to correct potentially dangerous errors to my dad’s medication list. My presence promoted a continuity of care that was otherwise missing and allowed for more rapid triaging and transition out of the emergency department. In effect, as my dad’s caregiver I compensated for many of the limitations of the emergency department. I would spend hours standing by his stretcher, fearful to leave for the bathroom or food. I knew that missing a rounding team’s visit could delay his care, possibly even by days. And I wasn’t alone. Throughout the emergency department were exhausted and anxious caregivers, striving to do exactly what I was doing. Back then I thought that we should be given a badge, something to identify us as caregivers. Instead, we were often overlooked.

The Covid-19 pandemic has highlighted a national caregiving crisis that has existed for decades. Caregivers shoulder tremendous responsibilities, frequently without formal training and support, and at the expense of their own physical and psychological well-being. The pandemic presents an opportunity to learn and take concrete steps to address caregivers’ needs. Not only must we differentiate caregivers from visitors, but we require an infrastructure that supports caregivers, in emergency departments and hospitals and at home.

The only regulation to mandate routine identification of caregivers is the CARE (Caregiver Advise Record Enable) Act, which requires hospitals to document caregiver information and provide training to facilitate care of patients upon discharge. The CARE Act is a start, but more is needed. Let’s give caregivers ID cards that allow easy entry in and out of emergency departments and hospitals; let’s give them pagers so that they can be notified when the rounding team is en route to the bedside. My colleagues and I have suggested that caregivers should receive their own medical record, a step that would facilitate communication, data collection, and the provision of necessary education and support. Many actions are required to address our caregiving crisis, including implementing an urgently needed national paid family and medical leave plan that would prevent caregivers from choosing between caregiving and work. Let’s take actionable steps to acknowledge what caregivers truly are—an essential extension of the health care team.

My dad died in February 2019 in an ICU. During lockdown, through continuing intense grief, I imagined being separated from him, like many of my patients had been from their loved ones. I thought about how helpless he would have been without me by his side, and what a gift it was that I was there, with my hand holding his and my lips to his cheek, as he took his last breath. I was never “just” a visitor.

Allison J. Applebaum, PhD, (@DocApplebaum) is director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center and author of a forthcoming book on caregiving to be published by Simon Element, a division of Simon & Schuster.

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  1. Beautifully articulated. Such an important missing piece in our medical system which often lacks a holistic approach. Thank you and I look forward to your upcoming book.

  2. I thank God every day that my mother did not iive during Covid lock downs. She died in March 2019. I was her caregiver. My mom had been admitted to a rehab facility and moved into long term care 5 months before she died at age 97 in March 2019. In addition to increasing confusion due to vascular dementia, profound hearing loss and aphasia, she relied upon me and my sisters to be her eyes and ears while there. She was frightened just being there, worried that she could never go back to her beautiful home. The only thing that got her through her days were the visits from each of us. And those visits weren’t visitor visits. We supplemented the sparse over-worked staff. We cared for her…lovingly.
    I thank God everyday that she and we never had to experience what patients and families endured during Covid restrictions. It seemed inhumane; there must have been a middle ground that could have been sought to both protect and support the most vulnerable. Instead, gut wrenching separation became our solution. Unimaginable that we could not have done more and better.

    1. You were absolutely her lifeline. Thank you so much for sharing your experiences here. Your Mom was so lucky to have you.

  3. For years, our organization, the Institute for Patient- and Family-Centered Care, has advocated for the importance of family presence and participation in all settings of care. Family members and other designated care partners are not visitors but, instead, have significant roles as essential members of health care teams. We completely agree with Allison Applebaum that COVID-19 presents an opportunity to address the issue in a systematic way. Faced with what happened during the pandemic, some organizations in the U.S. and Canada have already responded creatively to affirm and support the role of families as essential care partners. For recent resources and tools, see: https://www.ipfcc.org/bestpractices/better-together.html

    1. Thank you so very much, and for all of the work your organization is doing to amplify the role of caregiving families in our healthcare system!

  4. I just dropped my dad off at the ER…He’s got Parkinson’s/Dementia from a Lewy Body Protein..This article spoke volumes to me! I didn’t want to leave him, and he was upset too.
    I love this idea and am all for it! Thank you!

    1. It is so hard to be separated like that. I’m wishing you all the best in caring for your Dad. He is so lucky to have you.

  5. You are a deeply compassionate and wise warrior Allison. Your experience as as a clinicial-scientist and loving daughter make you exquisitely credible to help humanize our healthcare and larger social support system. Keep going! We need you….

  6. Thank you for sharing this moving narrative of the barrier caregivers, face navigating the healthcare of their loved ones in clinical settings. I wholeheartedly agree that no one better understands the needs of loved ones who are on end-of-life care than those that have been there by their side. Your love and dedication to your dad’s care and well-being are inspiring.

    An ardent advocate for an equitable standard of care in hospital settings, the integration of caregivers, surrogates, decision-makers, or health care proxies in the day-to-day clinical care of their loved ones, should be a health care right. Studies have shown how this sustained caregiver support early on in course of an illness, increases a person’s quality of life even when facing serious illnesses and greater access to care and treatment.

    The Center for Medicaid and Medicare Services designated advanced care planning as an eligible billable medical service which includes assigning a caregiver, agent, as a designated decision-maker about their health care if they become unable to do so for themselves. In families with limited health literacy, decision-makers or surrogates also serve as a bridge to a world that is foreign and strange. They can guide- what type of treatments are chosen, help navigate medical decisions that may not be in their best interest, albeit legal, and ones that are ethically and/or morally justified. Legislation such as the New York Family Health Care Decisions Act, in effect since 2010, is a step in the right direction, giving family members or close friends the authority to withdraw or withhold life-sustaining treatments. Existing legislation should be strengthened to allow appointed
    decision- makers and caregivers the right to be ‘present’ at their loved one’s bedside, and truly share decision-making with clinical care teams.

    The COVID-19 pandemic shone a spotlight on the pre-existing socioeconomic inequities of vulnerable communities which were more severely impacted by COVID-19, disproportionately carrying the burden. They also disproportionately share the burden of navigating a system that is for some unchartered territory. Must we also restrict access to those they cared for at end of their life?

    Thank you, Dr. Allison Appelbaum, for shining a light on the essential role, caregivers play in times of medical crisis.

    1. Thank you so very much for this incredibly powerful and insightful comment. Yes, legislation must be strengthened to allow caregivers/appointed decision makers the right to be present with their loved ones so that they can carry forward their responsibility to their loved ones, and truly share in decision making. And yes, the pandemic has highlighted disparities that have been present for too long, and which continue to disproportionately and negatively impact the most vulnerable communities, among whom too many are caregivers in crisis.

  7. Thank you for your moving account of your boundless love and tireless advocacy on behalf of your dad through his long illness. I am with you in believing your heartbreaking assertion that he would have died many years earlier, likely alone, without your strength and perseverance, not out of malice but out of failing to recognize the importance of having someone to speak for him when no longer able to speak on his behalf. I started my nursing career in a Pediatric Intensive Care Unit where caregivers, primarily parents, were a constant, expected, and welcomed presence. Nursing takes a lot of credit for being the last and final safety check at the end of a long process rife with potential error and harm. Still, vigilant parents are better safety stewards than even the most diligent nurse. While the attending and residents changed frequently, parents and primary nurses captured the day-to-day narrative of a patient’s hospitalization in a way an Electronic Medical Record will never document.
    When I relocated and found myself working at a rural medical center, I realized just how unsupported and unaccommodated caregivers are in the adult healthcare world. I found my nursing colleagues’ resentment of family members who “never leave” the hospital quite shocking. When COVID shut down visitation, at least at first, there was a logic, even without evidence, that it was the right thing to do. With so little PPE and tremendous fear of transmission, keeping people away from the hospital made sense. Still, my hospital and many others maintained severely restricted patient visitation through wave after wave, despite widespread vaccine availability and healthcare worker vaccination mandates, emerging treatments and therapeutics, and a falling COVID mortality rate. My hospital attempted to distinguish between a “visitor” and a “support person,” defined as someone integral to the patient’s day-to-day care to assist with physical help or communication needs. I am confident you would have been recognized as a “support person.” Still, suppose you needed a break or to swap out another caregiver. In that case, I can easily imagine the employee, reassigned to work as the gatekeeper in the hospital lobby, hassling your substitute about any number of issues before turning her away. Maybe she is not on “the list,” perhaps the list has not been updated, maybe it is the wrong time of day, or maybe the security guard cannot reach the charge nurse to ask permission. Every time I walked past the lobby, I heard a version of that conversation and felt ashamed thinking of the scared and vulnerable patients alone in their rooms. The process was worse or impossible if the patient had COVID. We kidded ourselves that we had a policy and a system, but the truth is that persistence paid off, but only those stubborn or informed enough succeeded in routinely having support for patients who needed it. The mantra of “following guidance about visitation from the Department of Health” felt hollow after the first year of COVID and obstructionist after the second.
    The truth of the matter is that pushing back against caregivers’ requests to be present was easier than figuring out a way to support their safe participation. Ignoring them reinforced the national caregiving crisis and discredited the invisible labor they provide. COVID sparked a renaissance in epidemiology and statistical analysis, but quantifying the suffering and loneliness of patients separated from their loved ones by stringent visitation policies is an elusive metric to measure. Two years of working through ethics consults during COVID helped me understand the desperation and decline precipitated by isolation in the hospital. Rolling a communication cart into the room of a delirious and paranoid patient to connect with familiar faces and voices rarely had the intended effect. Middle of the night, exclamations of despair of “wanting it all to be over” prompted a psych consult instead of seeking ways to offer reassurance and meaningful connection. The effect of prolonged isolation is the parallel tragedy of COVID on elderly adults, along with the grief of the families who missed out on precious time with them. It’s painful to think of all the tender last moments missed. While COVID sharpened infection prevention and incident command structures at my hospital, I am not confident that we have appreciated the unintended consequences of an astringent and inflexible visitation policy and seem likely to make a similar choice again. Still, as you point out, draconian visitation policies are only one part of the problem. A commitment to integrating caregivers into patient care is a humbling takeaway from your essay. It would seem to go without saying, but as you point out, there is a long way to go to genuinely and systemically recognize family caregivers as a valid extension of the care team.

    1. Thank you so very much for your insights, and for the work that you’ve done at the bedside in serving patients and families. Your professional lens has truly highlighted how unsupported and unaccommodated caregivers are in the adult healthcare world. And you have witnessed so many of driving forces behind the limits that caregivers face, not the least of which is complacency on the part of the systems in which we work. Caregivers are shouldering such tremendous responsibilities and should be looked at as healthcare professionals’ best friends, not a burden, not a nuisance. They have the most accurate understanding of their loved ones’ illnesses, health history, and quality of life, among other things. We can do better. Much better than playing a role in contributing to the current mental health crisis experienced by caregivers. There is indeed a long way to go. But the steps I’ve outlined and advocated for here and elsewhere can be implemented and should be disseminated. The time is now.

  8. Thank you so much for sharing your story. It was very well said and I felt your compassion and love for your dad throughout your story. I am passionate about the poor shift changes and patient handoffs hospitals and clinics experience. Communication is one of the top priorities for effective care in medicine, and I think it is something that needs tremendous improvement. I can empathize with your worry of leaving your dad’s side in fear of missing a handoff and possibility of communication errors arising. Continuity of care is something that is necessary for good quality care in medicine, and it is something we are sadly moving away from as we lead into a world of super-specialization. When there is not one clinician accepting responsibility for the patient overseeing all aspects of the patient’s care, the patient is unable to be given comprehensive care. When a patient is not treated in a comprehensive sense, the healthcare professionals are undermining their duty of beneficence. I commend you for being that person for your father and I can recognize how difficult that was for you. I appreciate your suggestions to give caregivers more support as they are a vital part of treatment plans and continuity of care for many patients. I think your suggestion of a pager to be notified when handoff is occurring or information is needed is a great idea and would take away stress from the caregiver when they have to leave to use the restroom or take care of other matters. I also think your suggestion of caregivers obtaining their own medical record could be a helpful tactic if they are able to receive the proper education to understand the records and utilize them for their benefit. I think you raise amazing points and articulate how necessary caregivers are and the additional support they should receive. Lack of continuity of care by the healthcare team is a major problem and I think it is only going to get worse as we choose multiple specialists for our care instead of one generalist. Thus, we must find ways to ensure we have some form of continuity of care to provide the best quality of care to patients. If caregivers are going to be that form of continuity of care, they must be treated as the vital part of the patient’s care that they are and provided with further support.

  9. Thank you so much for this thoughtful reply. Communication is such a key piece here, and it’s why caregivers have become so critical to care. Without a physician champion to coordinate care and discussions between healthcare team members, it is left to caregivers to do so, and that is when they are available, willing and able.

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