When the Aims and the Ends of Health Care Misalign

Interrupting Medical Care With EHRs

In early 2016, a woman we’ll call Jeanne needed a specialized test, not available where she received her regular medical care. After undergoing treatment for three separate cancers, Jeanne was no stranger to the medical system, but until this point she’d received all of her care from physicians at one hospital in a large U.S. city. When the time came for the specialized test, she was told she’d need to bring her records from her current hospital. Although the two facilities were only a half-mile apart, they used incompatible electronic health record systems. Faxing the notes was insufficient, as the specialized center needed the actual X-ray images. Jeanne was told it was her responsibility to bring all of these records to her appointment; if she did not have them, or if the radiologist could not interpret them, the procedure would be canceled.

After multiple phone calls, Jeanne retrieved all of her records. On the day of her appointment, she arrived early to the specialized center. There was a snowstorm, so she allowed extra time. Getting out of the cab, she slipped on the ice. Although she didn’t fall, she dropped the folder containing her records, scattering papers, and compact discs. Jeanne gathered up everything, went inside, and dried the reports and discs as best she could with paper towels. While waiting, she worried that the scans might not be usable and that she would have to start the process over again. After a long wait, filled with anxiety, she was called in, and was finally told, yes, we have everything we need. She was able to undergo the procedure as scheduled. ¹

In the late 1990s, despite widespread use of computers for most consumer transactions, paper and pen were still the norm for the majority of physicians. Handwritten charts were used for documentation, and prescriptions also were written by hand. When patients received care from specialists, their primary care physicians were informed via U.S. mail and fax (Menachemi and Collum 2011). In part due to reports from the Institute of Medicine and others calling for more patient-centered care, during his 2004 State of the Union address, President George W. Bush set a goal that most Americans would have their medical information maintained in an EHR system within 10 years. The 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act described a staged program of incentive payments for physicians and hospitals to not only use EHRs but also to demonstrate “meaningful use” (MU) of these systems. MU criteria included electronic communication between physicians, computerized order entry, electronic prescribing and medication interaction checks, and patient access to electronic copies of their health information. Financial penalties for noncompliance were proposed (Blumenthal and Tavenner 2010; Classen and Bates 2011; Colicchio, Cimino, and Del Fiol 2019; Friedman, Parrish, and Ross 2013; Furukawa et al. 2014; Tang and Lansky 2005).

Intended and Unintended Consequences

The promise of this newly enacted public policy was to improve safety, quality, and efficiency for the U.S. health care system (Blumenthal and Tavenner 2010; Classen and Bates 2011; Menachemi and Collum 2011; Tang and Lansky 2005). Physicians would document everything electronically, so that anyone caring for a patient, regardless of health system or office location, could access that patient’s records. This interoperability, it was argued, would better coordinate care among physicians, reduce duplication of tests and procedures, and lower health care costs. Safety checks would be built into the system—for example, electronically reviewing allergies and medication interactions before filling new prescriptions. Automated reminders for screening tests such as colonoscopies and mammograms, immunizations, and other preventive services would be sent to primary care providers. Physician compliance with these measures would be tracked, contributing to better public health (Friedman, Parish, and Ross 2013; Jha et al. 2010). EHRs also were expected to reduce billing errors and increase revenue for providers, by capturing all billable components of the service encounter (Menachemi and Collum 2011). Finally, EHRs were seen as a way for patients to manage or “own” their health care data. Patients would have more input into their care with the opportunity to review their physician’s notes and test results and to communicate electronically with their health care team (Jha et al. 2010; Menachemi and Collum 2011; Tang and Lansky 2005).

EHRs surely have yielded many advantages, but they have not improved patient care to the degree and in the ways intended (Schenarts and Schenarts 2011). Unintended consequences of EHR adoption have ensued, contributing to both patient and physician frustration.

Moving Forward With EHRs

EHRs have many flaws, but returning to the days of stacks of paper charts and illegible prescriptions is also not viable. Various efforts to improve EHR systems and their uses are underway, and practicing clinicians and patients should be involved in the EHR redesign process (Patricio, Teixeira and Vink 2019).

Gawande (2018) describes a neurosurgeon who took the initiative to tailor his institution’s EHR to the specific needs of his patients and department. Despite initial resistance from hospital administrators, attorneys, and the EHR vendor, he was given permission to reconfigure his department’s interface to capture information most relevant to their neurosurgery patients. Day and Belden (2019) have described an empowering, peer-support EHR “happy hour” where physicians gather to share best practices and concerns. Patricio, Teixeira, and Vink (2019) stress having both patients and physicians involved in redesign efforts to ensure that all who rely on the EHR will benefit from changes. In addition, physicians need to shift their mindset from the EHR as a traditional chart and “memory aid” to a tool that can help patients take more active control of their care (de Lusignan et al. 2014), such as with the use of “open notes” (Wolff et al. 2016).

Relatively simple EHR design changes could make a big difference in enabling the physician to focus on what the patient needs. Many items on a physician’s EHR dashboard are unnecessary for the clinical visit and can lead to distraction and overload. A “quiet dark” display design—which shows only information that is necessary for the user at the time (such as tasks needing completion)—has been suggested, as has a more intuitive display of test results, focusing on abnormal values or display in graphic formats (Kroth et al. 2019; Reuben and Sinsky 2018, Zulman, Shah, and Verghese 2016). Ideally, the EHR also would actively track trends in laboratory and other data and alert physicians to patterns that suggest impending clinical deterioration, readmission, or other undesired effects. Rather than being a mere repository for a patient’s end-of-life preferences and advance directive, the EHR could prompt and facilitate conversations about these important matters.

Alkureishi et al. (2018) note that although many validated tools assess physician communication skills, most were developed before widespread EHR adoption. They report on efforts to develop and validate tools that are more patient-centered and to reinforce the value of EHRs in the patient-physician relationship. Ideally, the EHR would be bidirectional, with patients adding their thoughts and concerns to the document in meaningful ways before the clinical encounter. That would allow patients and physicians to use their limited face-to-face time more efficiently. In their review of EHRs’ influence on the patient-physician relationship, Alkureishi et al. (2016, p. 558) note that the EHR can improve patients’ understanding of conditions and treatment plans, but that educational efforts and research are needed before widespread adoption of best practices can “help foster humanistic patient-doctor EHR interactions in the digital age.” Tang and Lansky (2005, p. 1290) remind us, “A continuous healing relationship is a two-way interaction (whether electronic or face-to-face) between patients and their providers.”

Sacrificing Relational Medicine for the Promise of Productivity

I carefully don the personal protective equipment (PPE) I need to enter my ICU patient’s room. Stricken with COVID-19, she is entirely alone. The team has not followed me in; the nurses do their best to minimize use of scarce PPE; the respiratory therapists enter only for necessary ventilator adjustments. Even the pumps have been moved into the hallway. No family is at the bedside. In the midst of the surge, she is another statistic, another number on a graph charting our city’s growing contagion, another occupied ICU bed and ventilator when we have too few of both. She represents our failure to contain the virus. She is also my long-term patient. I have known her for 15 years. I easily recall other times we’ve narrowly evaded death together. I know she recently colored her hair, that her husband is terrified. I use the hospital-supplied iPad to FaceTime with him, to reassure him that I, someone he knows and trusts, am with her now. I’m unreasonably relieved that he instantly recognized me, even with my mask and face shield. The reciprocity, of seeing and reassuring each other, takes only a moment—in the context of a shared history, one that so many other ICU patients never get to experience.

It might seem intuitive that health care should occur in the context of a holistic, trusting relationship between patient and clinician. But that is not the default state of medicine, which often tends to aim for “what can be done” rather than accounting for patients’ preferences, values, goals, and motivations. The holistic model, called relational medicine, cohesively integrates personhood, body, and science—and aligns treatment with the personhood of the patient. Relational medicine requires time for clinicians to listen to their patients, and an environment that allows them to fully hear. That kind of attentiveness values the patient’s knowledge and the storied nature of medicine itself (Awdish and Berry 2017).

Perhaps nothing has posed a greater challenge to relational medicine than the COVID-19 pandemic. Patients are cared for in isolation rooms, are often unable to communicate due to dependence on mechanical ventilation, and cannot have family as advocates by their bedside because of infection risk. Limited PPE means each entry into the room is thoughtfully considered, weighing the need to enter against the attendant risks. Conversations are forced through plastic N-100 respirators or muffled by N-95 masks. Attempts to understand the personhood and life of the patient occur by phone or through tablet devices—and even then, the physician is masked. Risk of depersonalization has been realized at scale.

Even before COVID-19, several factors were undermining relational medicine and leading to a paradigm of compressed clinical encounters. These factors included involvement of multiple clinicians who provide one patient’s care, greater digitization of care delivery, and accelerated involvement of remote stakeholders such as insurers, administrators, and government agencies (Lewis, Hoangmai, and Levine 2019). The result is that the doctor-patient relationship is becoming more transactional and episodic rather than relational and longitudinal. Fewer opportunities for high-quality, trust-building interactions exist in a system that prizes productivity over medicine’s true purpose—an intention to heal (Awdish and Berry 2019).

Intended and Unintended Consequences

As patients’ clinical profiles become more complex and available treatments increase in number, the need for relational medicine has never been more acute. Trapped in an antiquated reimbursement model, doctors and health systems are not rewarded for the time-intensive care many patients require (Hsiao et al. 1992); nor are they integrated into the community, where the socioeconomic predictors of patients’ health can be assessed and addressed (Artiga and Hinton 2018). Even at the end of life, interventions that yield marginal benefit are given to patients whose physicians may not understand their priorities (Kelley et al. 2015). A system that rewards productivity and service volume does not facilitate conversations that align care with patients’ values and goals (Barclay 2010). One of the paradoxes of medicine is that while the apparent short-term financial benefits of hurried, often inattentive care may contribute to long-term harms, the two are difficult to link directly. We must understand this phenomenon more clearly by considering domains where it manifests.

Moving Forward With Relational Medicine

How do we reconnect with what is sacred in clinical practice? To begin, technology could be used to automate administrative tasks and allow physicians to devote more time to directly engaging patients rather than creating a barrier to engagement. In a study conducted for the U.K.’s National Health Service, economists estimated that for each minute of keyboard work that could be avoided by doctors, 400,000 hours would be freed up for patient interaction, effectively adding 230 full-time physicians (Topol 2019). But making significant changes would mean seeing the clinical encounter as more valuable than productivity measures, and affording clinicians the time for it. In this way, COVID-19 has accelerated change, with physicians now engaging patients more often in virtual visits and telehealth. The Centers for Medicare and Medicaid Services has assisted individual providers and systems by easing burdens related to payments and waivers (Hollander and Carr 2020).

Health systems themselves must invest in organizational cultures that value patients’ voices. Options include setting up patient and family advisory councils and sharing patients’ stories regularly at meetings. Often what patients really seek is simple: to be heard, to have confidence in the clinician, to share their stories and what matters to them, to be a partner in their care. But those wishes often conflict with the RVU-driven mindset discussed earlier. Patients value longitudinal, meaningful relationships with clinicians. Evidence shows that forging such relationships boosts adherence to treatment plans and reduces use of emergency and inpatient services (Khullar 2019). Forums such as leader rounds—regular, in-person interactions between administrators and care teams—further understanding of the goals, perspectives, and limitations of the other (Kornacki, Silversin, and Chokshi 2019). Medicine requires proximity in order to heal.

Multifunctional teams can buttress physicians in exam rooms, in a model called “advanced care team with in-room support” (Sinsky and Bodenheimer 2019). The teams allow health professionals to do the high-level care only they can deliver to patients, while increasing clinicians’ pride in their work. Early data point to improved satisfaction for patients, staff, and clinicians, as well as financial sustainability under both fee-for-service and value-based payment systems (Sinsky and Bodenheimer 2019). These kinds of multifunctional teams also allow more space for physicians to engage in work that they find professionally meaningful.

Food insecurity, transportation access, and behavioral health also deeply influence efficacy of care. A proactive model of care could engage nontraditional team members, from home care to behavioral health, in order to effectively serve the whole person, essential in forging strong relationships and improving long-term productivity by addressing the social determinants of a patient’s health. This effort requires community partnerships that expand the patient narrative beyond the hospital walls, empowering health care organizations and provider advocates who aim to achieve social justice and eliminate health disparities. “Health is about more than healthcare,” as Woolf (2019, p. 196) writes. Investing in “nonhealth” sectors, such as improving substandard education and living conditions, may do more to save lives than medical care (Woolf 2017). Medicine doesn’t seamlessly intersect with the social services many patients need, making it harder to effect change at scale; systemic barriers and bureaucracy continue to stand in the way. Many diseases are rooted in poverty, racism, addiction, and inadequate resources to foster health-promoting behaviors. When acute episodes of illness are not contextualized within this structure, healing does not occur, only acute episodic treatment.

There are increasing calls for physicians to organize collective-action groups, even as entities such as the National Rifle Association tell them to “stay in their lane” (Haag 2018). Eric Topol (2019) imagines a new organization that confronts the transformational challenges ahead, in service of patients. Such an organization would, by design, aim to address threats to individual health through advocacy and policy change at scale. Topol rightly asserts that such an organization’s first priority would be restoring the essence of medicine. As COVID-19 has exposed the vulnerabilities of large segments of the population, as well as our interconnectedness, organizing to design a system that truly addresses the socioeconomic determinants of health has never been more imperative.

Overtreating and Underhealing Patients With Advanced Illness

For two years, Dr. Daniel Rayson cared for his middle-aged patient, “Emily,” a former teacher with locally-advanced, then metastatic breast cancer. An MRI scan confirmed what Rayson could see with his eyes: Her body was shutting down; she was dying. When Rayson told her, with her adult children present, that he was not recommending further curative treatment, she whispered to him, “Thank you…I could never have coped with any more.” Emily then asked if she could take one more trip to see her new granddaughter. Rayson agreed, provided that her children could help organize the trip, but Rayson’s colleagues argued against it: “Not safe”; “What if she has a seizure?”; “What if she dies?” Rayson arranged for medical assistance, if needed, at the destination and gave the family his mobile number and a prescription for a high-dose anti-inflammatory medication to reduce swelling associated with tumors. But for two weeks, Rayson felt anxious about whether he’d made the right decision.

The next communication he received was a text from Emily’s daughter—“We’re back home. The trip was worth it.”—with an accompanying photo of grandmother holding her new grandchild. Rayson (2018) writes: “What terrible power we have to deny or grant a last wish to a dying woman, and how ignorant we are when we fail to realize this fact until the very last moment. How many others have needed the same but have not had the courage, support, or guidance to ask? How many have I denied, by prescribing another line of treatment or provoking sudden toxicity that could have been avoided by granting a last wish instead?” (Rayson 2018, p. 3521)

Every 12 seconds someone dies in the United States (Wellberry 2019). Although death is inevitable, dying in pain because of intensive treatment’s side effects, or in a hospital room surrounded by medical equipment, or in a poorly staffed nursing home feeling isolated and alone, can be avoided. In the final month of life, about half of Medicare beneficiaries are treated in an emergency room, one in three in a hospital ICU—and one in five undergo surgery (Halpern 2015).

Health care’s core mission is to heal in its broadest sense—physically, emotionally, spiritually. Healing extends beyond curing, which may not be possible. Clinicians offer healing when they mitigate pain, when they partner with patients toward making difficult but well-informed decisions, when they stand by their patients’ sides even when they cannot cure them (Awdish and Berry 2019).

Helping people with advanced illness (illness that leads to death) live as well as possible until they die is a powerful form of healing. But people in the United States often do not die how they wish; they experience the so-called “bad death” (Neumann 2016), for reasons that are complex and mostly unintended. People die only once. They lack experience and need supportive conversations with their clinicians and family to identify and communicate their preferences for end-of-life care while they still can. They need to complete an advance directive—written instructions on their medical care preferences if they become incapacitated. But this scenario occurs too infrequently. Moreover, health care’s remarkable technical advances subtly impede a “good death” that is, as David Parkins (2017) puts it, “free from pain, at peace, and surrounded by loved ones….” Although the percentage of Americans dying in a hospital declined from more than 50% in 1999 to 37% in 2015 (Aldridge and Bradley 2017), it remains a large number given that more than two thirds of people indicate in surveys a preference to die at home (Gomes et al. 2013; Groff, Colla, and Lee 2016).

Hospitalization at the end of life often results in nonbeneficial treatment, medical mistakes, increasing disability and injuries (Aldridge and Bradley 2017; Covinsky, Pierluissi, and Johnston 2011; Gill et al. 2015). Murray (2016) writes about how doctors die differently than the rest of us by receiving less treatment at the end. Many physicians, after all, have witnessed and possibly participated in the delivery of futile care and the misery it can inflict; many doctors make a different choice for themselves (Murray 2016).

Intended and Unintended Consequences

Starting in medical school, physicians are trained to diagnose and treat illness and injury. ² The goal is to cure, when possible, and otherwise offer as much recovery and relief as can be achieved. Except for palliative and hospice care specialists, the physician’s calling is to practice curative medicine (treatment of the disease) to cure, improve, stabilize, or slow progression of the illness. Doctors are trained and, in U.S. medicine’s predominantly fee-for-service payment system, paid to use the tools at their disposal to extend life.

Treating illness has contributed to a 30-year increase in life expectancy during the past century, though other developed countries have achieved similar increases (Olshansky 2018). But what about patients with advanced disease who will not recover and whose life cannot be extended in a manner that they would want? Trying to treat the untreatable, to cure the incurable, can unleash considerable physical, emotional, and financial burdens—pain and suffering for the patient, prolonged grief for the patient’s loved ones, and significant expense for families and for society. In the United States, end-of-life care amounts to approximately 30% of all Medicare spending (Davis et al. 2016). Gawande (2010) writes: “The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins.”

The intense focus on treatment has the unintended consequence of putting nontreatment options on the back burner. The mantra to fight disease diminishes the humane role that modern medicine can play in ceasing the struggle to extend life at almost any cost, in favor of helping patients achieve physical comfort, dignity, and emotional peace while supporting their families (Bruera 2019; Byock 2015). Treating people with a fatal illness requires them to endure hardship in the present (through surgery, toxic drug regimens, and other interventions) for the chance to live longer (Gawande 2010). Compressing the time that dying patients feel very sick requires not only well-informed, brave patients and families, but also well-informed, brave physicians who sensitively and respectfully offer healing in its truest sense.

Moving Forward With Care for Advanced Illness

Care of patients with advanced illness needs to include courageous conversations, supportive home care, and rebranding of palliative care—while fixing hospice care. Patients having more and earlier conversations about end-of-life care with their physicians, families, and friends increase the likelihood that they actually will receive that care, no more and no less than they wish. Palliative care physician Diane Meier recommends that such conversations be integrated in patients’ discussions with their primary care doctors, in the same way that topics such as weight, tobacco use, and vaccinations are routinely discussed (Sadick 2015). Most end-of-life conversations occur late in the illness cycle, when emotions are high and deliberate consideration is more difficult (Mack et al. 2012).

Stuart and colleagues (Stuart, Begoun, and Berry 2017; Stuart et al. 2019) propose that physicians may be able to help patients move to a different kind of hope when cure or remission is not possible. The authors distinguish between focused hope, which centers on the goal of cure or remission, and intrinsic hope, which centers on improving the present with symptom control, family time, personal reflection, contentedness, and inner peace. Helping patients and families make this transition requires a strong, trust-based patient-doctor relationship, as well as physician gentleness, persistence, and skill. The transition to intrinsic hope facilitates ceasing medical treatment that is more likely to harm than heal. Physicians’ communication skills and self-confidence in discussing end-of-life care with patients and families are essential to healing and need greater focus in medical training, starting in medical school (Institute of Medicine 2015; Rosenbaum 2016).

Patients’ conversations with family and friends about end-of-life care also can be extremely beneficial. As Pulitzer Prize-winning columnist Ellen Goodman (2015) wrote, “We have to bring people to the kitchen table to talk with those they love before there is a crisis. Not in the ICU.” Goodman is a founder, along with the Institute for Healthcare Improvement, of the Conversation Project, which encourages and guides families and friends to discuss end-of-life preferences. Hundreds of thousands of people have downloaded the Conversation Project starter kits to help with these sensitive discussions. A growing program, “Death over Dinner,” is an interactive internet exercise to guide people in how to bring others to the dinner table, comfortable and informed to discuss dying (Voelker 2019).

Supportive home care for people with advanced illness can reduce emergency room visits, hospitalizations, and ICU-level care while increasing patient and family satisfaction and facilitating conversations that lead to intrinsic hope (Angus 2017; Rothman 2014). Home care can reveal to the care team, in a lower stress setting, important details about a patient’s living conditions and level of family support that may not be evident during clinic and hospital visits (Berry, Castellani, and Stuart 2016). However, home-based care cannot simply be delegated to the family (as we explain in the next section); health professionals must partner with the patient and family, possibly bolstered by community services such as home upkeep (Sweeney, Danaher, and McColl-Kennedy 2015). In short, home-based care must be a preferable place for care, not a means of withdrawing care that patients want and need.

Innovative, successful home-care programs illustrate the promise of more healing at a lower cost. One role model program is Sutter Health’s Advanced Illness Management (AIM) service. A large integrated health system in Northern California, Sutter sends interdisciplinary teams of nurses, social workers, and others to deliver care to Medicare patients with advanced illness (Ciemins et al. 2006). The teams are trained to discuss with patients and families the expected course of illness and available alternatives (including hospice care), to provide appropriate medical interventions, and to help coordinate patients’ care with other clinicians (Stuart 2019). The AIM program has significantly reduced hospitalizations and costs for patients during their last 30 days of life (Stuart 2019).

Handley and Bekelman (2019) champion the idea of the oncology hospital at home (HaH), a care model that is more common outside the United States and has proven to be successful (Luthi et al. 2012; Raphael et al. 2005; Tralongo et al. 2011). In the United States, Johns Hopkins Health System has had such a program for more than 20 years. Such programs usually involve care delivered by nurses and doctors in the home, including chemotherapy infusion, lab testing, and remote monitoring (Handley and Bekelman 2019). HaH programs of the Icahn School of Medicine at Mount Sinai and Brigham Health have reduced inpatient care days and costs while improving patient satisfaction without diminishing quality or safety (Federman et al. 2018; Handley and Bekelman 2019; Levine et al. 2018).

The AIM and HaH programs mirror certain aspects of palliative care, which also is starting to be offered in the home rather than the hospital or clinic. ProHealth Care Support, for example, provides home-based palliative care to enrollees in person and virtually on a 24/7 basis using teams of physicians, nurses, and social workers—and working cooperatively with paramedics, hospices, and other service providers to the seriously ill. Significantly lower utilization of health care (e.g., hospitalizations and ICU days) and higher patient and family satisfaction document the promise of well-executed home-based care (Lustbader et al. 2017).

Nursing homes, which are supposed to keep frail elders as safe and well as possible, often fall short—a reality magnified by the disproportionately high number of residents dying from COVID-19 (Yourish et al. 2020). About one in four Americans die in a nursing home (Teno et al. 2013). Innovative, supportive home care can reduce this number over time. And when nursing home habitation is necessary, it can and must be improved greatly, with more emphasis on keeping residents engaged and physically active. In his seminal book, Being Mortal, Gawande (2014) tells the story of a young physician, Bill Thomas, who became medical director of a nursing home. Thomas was determined to attack what he termed the “three plagues” of nursing home living: boredom, loneliness, and helplessness. He had green plants put in every room, invested in vegetable and flower gardens for residents to tend, and brought in animals—dogs, cats, parakeets (which were adopted and named by the residents). Within 2 years, total medication costs had plunged and deaths fell by 15%.

Rebranding palliative care while fixing hospice is essential to improving advanced illness care. The term “palliative care” may be useful for billing and other internal purposes, but its suboptimal branding contributes to the service’s underuse. A strong services brand name is distinctive, relevant, memorable, and flexible (Berry, Lefkowitz, and Clark 1988), and palliative care lacks both relevance and memorability for patients and families (Berry, Castellani, and Stuart 2016). Moreover, a brand name needs to work for physicians. MD Anderson Cancer Center changed the name of palliative care to “supportive care,” resulting in more and earlier referrals to the service (Dalal et al. 2011; Fadul et al. 2009). A name such as “supportive care” helps clinicians better explain (and understand for themselves) the service’s purpose, which is to help patients live as well as possible while seriously ill (Berry, Castellani, and Stuart 2016).

Hospice is a form of palliative care that focuses exclusively on the end of life. Enrollment in government-insured hospice care typically requires patients to forgo curative treatment. This, coupled with required physician certification that patients are likely to die within 6 months, is a deal-breaker for many patients and physicians. The result is late use or nonuse of a vital service (Casarett 2011; Rubin 2015; Wolf, Berlinger, and Jennings 2015). For many, the hospice brand is about death rather than living life as well as possible. As Landers (2016) writes, “On the hardest days hospice is about fighting tooth and nail to make lemonade from lemons, and at its best hospice makes everyone involved more alive and more human.”

Ideally, these demand-destroying requirements for hospice enrollment can be eliminated, effectively merging palliative and hospice care into one overall category with several levels of care available as patients’ needs evolve. This structural change would offer more continuity of care as one or more members of the palliative care team continuously serve the patient and family. It also would encourage more and earlier use of what could be called “supportive care,” “advanced illness management,” or another term that, unlike “hospice,” does not connote death.

Hospice also needs to more consistently offer a higher quality of care to improve the brand and generate more use. Substandard service to people who are dying is far too common in the United States. Not providing licensed nurse care during a crisis period of 8 to 24 hours, selectively enrolling the patients who are least costly to serve, prematurely discharging the costliest patients, and failing to employ enough well-trained, credentialed clinical staff are among the most serious service shortcomings (Berry, Connor, and Stuart 2017; Office of the Inspector General 2019; Stevenson and Sinclair 2018; Teno et al. 2016). An alarming government report on protecting Medicare hospice beneficiaries from harm recommends that the Centers for Medicare and Medicaid Services receive statutory authority to strengthen hospice reporting requirements, monitor and measure performance more effectively, and impose appropriate penalties for poor performance (Office of the Inspector General 2019). Many hospices provide excellent service; it is the wide divergence in quality within the industry that merits prompt, serious attention. People’s preference to die at home makes improving hospice quality all the more important.

Overrelying on and Poorly Preparing Family Caregivers of Seriously Ill Patients

Over the course of three months, Karen became increasingly anxious and depressed. She never imagined that the events of the previous four years would lead to so much stress. Her 83-year-old mother—who has hypertension, Alzheimer’s disease, and rheumatoid arthritis—moved in, after a hospital stay related to complications from an enlarged bladder. As a single mom with one son in college, Karen is now consumed with the role of care coordinator and service provider. In addition to her demanding full-time job as a legal secretary, her days are filled with coordinating multiple health care providers; arranging transportation and home-delivered meals; managing multiple, complex medication regimens; and dealing with difficult behavioral issues and other health-related tasks. Attending visits to multiple health care providers with her mother and arranging for and patching together services and supports while she’s at work are taking more of her time. Karen’s job has some flexibility, but she has used up her vacation leave and now must take time off without pay. Karen finds it difficult to balance everything and is exhausted at night. Although she had been experiencing a bad cough for the past few weeks, she did not feel she had the time to have it checked, thinking she was just tired. Several days later she became extremely ill and collapsed at work. She was hospitalized for pneumonia. It was not until her own health scare that anyone asked her what she, Karen, needed—not just help with her mother or her son but also care for herself. (Feinberg et al. 2011)

For older adults and people of all ages with chronic conditions, “informal care” that happens within the context of family can be substantial in scope, intensity, and duration. Families often take up the slack in meeting the long-term care needs of patients with serious illness, including those with functional or cognitive limitations (Schultz and Eden 2016). To appreciate the essential role of families, one need only consider trends in the aging U.S. population and their health care needs.

By 2030, some 71 million people in the United States will be age 65 or older. Older adults are more likely to suffer from chronic conditions and are vulnerable to infectious diseases as seen with the COVID-19 experience during which a large proportion of deaths occurred among adults in this age group. Care becomes more complex as illnesses accompany cognitive decline and limitations in physical function. These impairments cause about 20% of people over age 65 and more than 40% of those over age 85 to need assistance with at least one activity of daily living (National Center for Health Statistics 2017).

Use of health services and health care spending is higher for people with multiple chronic conditions; they use twice as many medications and make nearly twice as many doctor’s visits than those who are healthy (Buttorff, Ruder, and Bauman 2017). Hospitalizations and emergency department admissions are also common. Because hospitals are the most expensive site for care, efforts to contain costs have shortened hospital stays so that patients are sent home sooner, and often sicker, than in the past. Many of these patients need care after returning home.

The health care needs of people with serious chronic conditions are likely to continue for extended periods, and transitions between care sites are common. Many patients are bypassing postacute care facilities such as physical rehabilitation centers, as they may not be in proximity to family, or affordable or desired by patients with long-term care needs. The result is that many patients go straight home from the hospital. Transitions are often burdensome for both patient and family members (Aldridge and Bradley 2017). The family caregiver may be the only common thread between sites of care and, thus, they inherit the responsibility of facilitating care transitions, often without the necessary skills or confidence (Coleman 2003).

Intended and Unintended Consequences

The age and health profile of the U.S. population has dramatically increased the need for home-based care. However, the cost of professional home-based care is beyond the means of many families, and Medicare provides only limited support for professional home care. The U.S. health care system and society depend on unpaid family caregivers to fill the gap. The willingness of family to provide care has largely been assumed (Institute of Medicine 2008), and the value of services provided by informal caregivers has steadily increased during the past decade, with an estimated economic value of $470 billion in 2017, up from $375 billion in 2007 (Reinhard et al. 2019a). As more older adults need care, the number of available family caregivers is declining because families are now smaller and more geographically dispersed, and more women are in the labor force (Wolff, Feder, and Schulz 2016).

An unintended consequence of the “expectation” of family care is an overreliance on family caregivers’ assuming responsibilities for which they are often ill-equipped. These unpaid caregivers have become an essential, but often unrecognized and unsupported, part of health services delivery. Family caregivers used to be called “informal caregivers,” in large part because they primarily assisted their loved ones with relatively manageable household chores and personal-care duties. Today, they not only do these basic tasks, but often extensive and diverse medical activities (Reinhard et al. 2019b; Reinhard, Levine, and Samis 2012). Nearly six in 10 family caregivers report performing complex medical/nursing tasks such as assisting with mobility devices, performing wound or ostomy care, using health monitors or test kits, and managing medications (Reinhard et al. 2019b).

Many family caregivers report feeling that they have no choice about being a caregiver and performing complex, stressful technical tasks (NAC/AARP 2020). They say they receive little or no pertinent instruction or guidance and often worry about making mistakes (Reinhard, Levine, and Samis 2012). In addition to providing hands-on care, family caregivers coordinate medical providers from different specialties, arrange for appointments, provide transportation to medical visits, and accompany the patient during visits. A large proportion (65%) communicate with health care professionals, and more than half advocate for their loved one including with insurance companies and government agencies (NAC/AARP 2020). These responsibilities require attention to detail, follow-through, and patience to navigate the complex, fragmented health care system and other supports and services the patient needs.

Caregiving can be a full-time job, and for many, this commitment is on top of full-time employment. On average, family caregivers spend around 24 hours per week, and more than 21% spend 40 plus hours per week caregiving (NAC/AARP 2020), often for years. The NAC/AARP study (2020) reported that on average, caregivers spent about 4.5 years in caregiving and 14% spent more than 10 years. Caregiving may crowd out paid employment entirely (Aldridge and Bradley 2017; Feinberg et al. 2011; NAC/AARP 2009) or at least lead the caregiver to reduce work hours or change jobs, often with lower pay.

As Karen’s story illustrates, family caregivers often neglect their own health and sacrifice time with family and friends. Intimate relationships may suffer, family conflicts may arise, and social isolation may set in. Family caregivers also may postpone or abandon personal life goals. Although caregiving has many rewards, it also can significantly impair overall well-being (Kelleher et al 2020). Caregiving has been linked to diminished quality of life, depression, impaired immunity, heart disease, and early death (Beesley, Price, and Webb 2011; Cameron et al. 2016; Northouse et al. 2012; Kim and Given 2008).

Moving Forward With Family Caregiving

It is time to make a strategic investment to support effective family caregiving and ensure that all stakeholders benefit. Discharging seriously ill patients directly home after hospitalization may help reduce the overall costs of care to society. It may also enhance the patient experience, as many patients prefer to be at home in a comfortable, familiar environment. However, these positive outcomes must be considered along with the previously discussed, often invisible burdens of family caregivers (Kelleher et al 2020). To ensure that family caregiving is sustainable and that caregivers provide high-quality care to patients with serious illnesses, three primary areas deserve consideration.

Discussion

Health care is one of the most important services consumers use. The quality of their lives—and life itself—may hang in the balance. As a skill- and labor-intensive service, health care varies widely in quality among providers. Selecting the right doctor, the right clinic, and the right hospital are weighty decisions. A unique service, health care is complex but intimate, anxiety-laden but needed, meant for healing but too often harming.

Health care is also central to society’s well-being, a reality powerfully underscored by the COVD-19 pandemic. The overall physical, mental, spiritual, and economic health of a community or country is directly linked to the effectiveness and efficiency of health care. Wasteful spending on health care in the United States, estimated to range from one quarter to one half of total health care spending (Cutler 2018), is in effect depriving American society of resources to address other vital societal needs. Health economist Victor Fuchs (2018) estimated in 2018 that reducing U.S. health care spending by 10% would release $330 billion for other uses.

Health care performs a sacred service—facilitating healing—and we must more rapidly close the gap between what U.S. health care is and what it could be. This article has explored four critical areas where health care effectiveness and efficiency are unintentionally suboptimal, thereby underserving stakeholders and undermining trust-based patient-physician relationships. EHRs are not intended to impede patient-physician rapport, create inefficiencies, or burn out clinicians. Pursuing greater productivity in the face of waste is not intended to sacrifice relational medicine. Overtreating and underhealing patients with advanced illness is an unintended by-product of a cultural focus on treating sickness. No one intends to transform family caregivers from personal-care helpers and comforters of loved ones into poorly prepared, at-home medical assistants. But all of these things happen.

Lessons for Non-Health-Care Services

Managerial implications for health care were presented in each of the “Moving Forward” sections of this article. But what about lessons from health care for services outside health care?

One such lesson concerns employee volunteerism, as all service employees are to some extent “volunteers” who calibrate their discretionary effort. Discretionary effort is the difference between the effort actually brought to a service role and the effort required to avoid adverse consequences, such as being criticized by a manager or bypassed for a promotion. Discretionary effort is extra; it is voluntary. And high levels of employee volunteerism in service organizations have been associated with competitive advantage (Berry 2008, 1999; Mohr and Bitner 1995). Dr. Rayson’s extra effort to grant his dying patient her last wish is service volunteerism in its truest form. Managers can learn a lot about how to strengthen volunteerism through well-executed, anonymous employee surveying. Maister (1995) found that employees’ work quality and effort correlate with their level of agreement with these four statements: “I am highly satisfied with my job”; “I get a great sense of accomplishment from my work”; “Most of the work I’m given is challenging”; and “I am committed to this organization as a career opportunity.”

When the “product” is a performance, as in the case of services, high employee volunteerism helps to create value for customers. Understanding the meaning of value—and how to deliver it to key stakeholder groups—is essential. Value is the perception of benefits received for burdens endured. Burdens comprise two categories: price and nonprice (e.g., inconvenience, poor service quality, user complexity, unclean facilities). This conception of value clarifies how a company can offer low prices but still be perceived by many customers as offering low value; nonprice burdens prevail (Berry 1999).

The initial intentions of EHRs were noble, but today’s EHR systems primarily facilitate health care organizations’ getting paid for services rendered while saddling patients and clinicians with substantial burdens. Such value distortion, whereby burdens outweigh benefits for key stakeholders, is instructive.

Service managers can increase stakeholder value by carefully working to determine what is most valued by customers and to identify any obstacles that prevent service providers from delivering better service. They should also be attentive to identifying waste to free up resources for those improvements.

Value and trust are inextricably linked, and trust is paramount in services. Because customers pay, or commit to pay, before they experience a service, their trust that the service organization or provider will perform well is a precious asset—one not captured on a balance sheet. Moorman, Deshpande, and Zaltman (1993, p. 315) define trust as “a willingness to rely on an exchange partner with whom one has confidence.” Trust is essential in forging strong, enduring customer relationships (Gwinner, Gremler, and Bitner 1998; Morgan and Hunt 1994). When customers find a trustworthy provider of a service that matters to them personally, is skill- and labor-intensive (and thus variable in quality), and is periodically purchased, they are likely to greatly value that relationship (Bendapudi and Berry 1997). Many organizations outside health care offer services with these characteristics.

Much of the extant services literature, too voluminous to list here, focuses on strengthening customers’ trust in the service and the relationship it fosters—for example, on improving service reliability, service recovery, customer experience management, frontline employee performance, relationship marketing, service innovation, and service branding. Every service organization, within or outside health care, should aim to honor customers’ “perceived contract” (what a customer reasonably expects to receive for the paid service) rather than merely relying on a legal contract designed to protect the company when it delivers poor service (McGovern and Moon 2007). That, after all, is central to how trust is built between any service organization and its customers. Firms should consider creating a “customer trust checklist” for periodic management review. Checklist questions could include: “Do we enforce ‘terms and conditions’ that belie common sense?” “Do we hide certain fees in the fine print to generate profit?” “Are we generous in recovery with customers when our service fails?” “Is our advertising completely truthful?” “Do we depend on contracts to prevent dissatisfied customers from leaving?” (Berry 2017; McGovern and Moon 2007). Authentic executive discussion of such questions can result in changes that strengthen trust and relationships.

Employee volunteerism, value, and trust are especially important for services that intensify customers’ emotions. These high-emotion services feature some combination of customer unfamiliarity, complexity, lack of control, extended duration, and major consequences if something goes wrong. These attributes, inherent in health care, characterize many non-health-care services—such as wedding planning, home-related services (renovation, buying, selling, moving), legal services, airline travel, driver’s license tests, and auto repair—that often evoke anxiety or worse, even before they are performed (Berry, Davis, and Wilmet 2015).

To diffuse customers’ anxiety and strengthen their confidence, health care and non-health-care service providers alike can prepare customers for what to expect and in how best to use the service—and can enhance customers’ sense of control by providing a direct contact point should a problem or need arise. Access to mobile technology, offering real-time information and support, can complement access to in-person assistance. Using research to identify the service experiences most likely to stir negative emotions is key to strategizing how to minimize those feelings. The research can range from probing customer interviews (e.g., “Describe the worst experience you can imagine when using this type of service”) to sophisticated experience-mapping of the customer journey. To better understand patients’ cancer journey, for example, Bellin Health in Wisconsin has used a process called “River Mapping,” whereby patients are instructed in how to draw a detailed map of turbulent and smoother events they have experienced since their cancer diagnosis (Berry, Davis, and Wilmet 2015).

Guidance for Service Researchers

Academic service researchers have a crucial role in moving health care forward. Their deep knowledge in areas such as operations management, service quality, consumer behavior, communications, data analytics, organizational culture, innovation, and marketing enables them to conduct research that benefits patients and clinicians—and that reduces waste while improving quality (Berry 2019; Berry and Bendapudi 2007). The concepts of coproduction and cocreation of value are foundational in service research (Vargo and Lusch 2008, 2004). Customer well-being and quality of life are of particular interest (Anderson and Ostrom 2015; Ostrom et al. 2015). Calls for additional research suggest the need to examine these processes and outcomes, particularly moving beyond a focus on providers and consumers to investigating service networks, service systems, and broader effects on society (Anderson and Ostrom 2015; Anderson et al 2013; Ostrom et al 2015).

Several comprehensive research agendas specific to health care have been published in the services literature (Berry and Bendapudi 2007; Danaher and Gallan 2016). These agendas, and other health care–relevant research agendas on topics such as customer experience (Bolton et al. 2018; Lemon and Verhoef 2016) and service design and innovation (Patricio, Gustafsson, and Fisk 2018), span a broad selection of research questions that merit consideration from service scholars. In this section, we propose research pathways for ongoing, longer term inquiry—aligned with the four health care domains explored earlier that focused on the unintended consequences of suboptimal health care service. Table 1 offers an agenda of key research questions for each pathway with a focus on strengthening the relationships so essential to the delivery of high-value health care.

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Table 1.

Service Research Agenda for Strengthening Relationships in Health Care.

Domain	Research Pathway	Key Research Questions
Technology	Co-creating electronic health records (EHRs) to benefit all stakeholders	How can EHRs help strengthen the trust-based patient-clinician relationship? How can EHRs facilitate humanistic patient-provider interactions? How can EHRs be designed to create more value (increase benefits and decrease burdens) for clinicians, patients, and family caregivers? How can EHRs help create equity among diverse users—e.g., by minimizing barriers for patients with limited health literacy and supporting options for those with limited digital access?
Relational medicine	Valuing the intangible, not just hard measures of productivity	How can patients and providers be more mindful of the defining relational events in health care? How can clinicians, patients, and family members co-create an understanding of what constitutes real value in health care? What are the roles of empathy and active listening in strengthening relationships among all stakeholders? How might reimbursement, compensation, and productivity models measure what is truly valuable to patients rather than merely countable?
True healing	Improving service for people with advanced illness	How can clinicians improve the emotional well-being of dying patients? How can valued relationships with the clinical team be continued when patients transition to hospice? Which home-care models and technologies best suit specific market segments? What are the service lessons from the best nursing homes?
Family caregiver support	Preparing family caregivers adequately and integrating them into the care process	How can family caregivers be integrated into the health care team without disrupting the sacred patient-provider relationship? What are the impacts on clinicians, patients, and family members of family caregiver inclusion in care planning? What are the kinds of education and training that family caregivers most need in order to co-create value in partnership with clinicians? What means of communicating with family caregivers are most helpful in building trusting relationships among members of the health care team?

Conclusion

Unintended consequences in health care services squander the trust of patients, their families, and many clinicians. Health care organizations need to make a margin, but they must do it in a way that aligns with health care’s core purpose of providing physical, emotional, and spiritual healing. Health care is the rare service where customers literally put their wellness and their lives in others’ hands. Is there any other service where trust and trust-based relationships are more important than health care? Is there any other service where unintended consequences not only damage that trust but have the potential to negatively affect people’s very quality, even duration, of life? It is not too late to rebuild lost trust in health care, but it will take the concerted effort of leaders and frontline providers in the health care sector, as well as of service and other researchers who bring their own expertise to bear on the seemingly intractable problems in health care.

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