By LISA EISENHAUER
In her early days as a medical ethicist just over 15 years ago, Leslie Kuhnel remembers getting one or two requests per year for consultations regarding patients who lacked decision-making capacity and had no known surrogate to speak on their behalf about their care.
These days, Kuhnel says, there are two or three ongoing consultations underway at any given time regarding what are known as unrepresented or unbefriended patients receiving care in the hospitals she serves across CHI Health, where she is vice president of ethics and theology. CHI Health is CommonSpirit Health's regional system operating in Nebraska and Southwest Iowa.
There is apparently no tracking done nationwide for unrepresented patients. But ethics professionals say facilitating the creation or approval of care plans for incapacitated patients with no identified surrogates or advance medical directives makes up a large and growing portion of their workload.
Disconnected from family
Nick Kockler is vice president for system ethics services at Providence St. Joseph Health. He says about 20% of the clinical ethical consult requests at Providence's Center for Health Care Ethics in Portland, Oregon, in the first quarter of 2021 involved unrepresented patients. He adds that experts forecast that this patient population will increase across the nation because of the 10 million baby boomers who live alone and the 20% who are childless.
Patrick McCruden, chief mission integration officer at St. Louis-based SSM Health, says unrepresented patients are seen at the system's hospitals quite often. "I think as our society has become more mobile and people are more distant from one another, it's easy for a person to get disconnected from family," he says.
Kuhnel says a patient's attending physician is responsible for determining that the patient does not have decision-making capacity. That physician then turns to relatives or designated surrogates to speak for the patient.
Establishing a care plan for an incapacitated patient who doesn't have a designated surrogate can pose ethical challenges for health care providers.
When a patient is incapacitated long term or permanently and no surrogate can be found, states have various mechanisms to appoint a guardian to make the patient's health care decisions.
Kuhnel says that in the region CHI Health serves there is a significant shortage of public guardianship resources, which exacerbates the problems associated with decision-making for patients who can't make medical decisions for themselves.
And David Ozar, a philosophy professor emeritus at Loyola University in Chicago who studies and writes about issues related to unrepresented patients, says the process of getting a court-appointed public guardian can be cumbersome and sometimes only adds to the complexity of decision-making.
"In the real world, many hospitals don't go to court for a guardian in these situations because it's expensive, it takes weeks or months, and you often end up with somebody who knows no more about the situation than you," Ozar says.
The need to respond quickly and ethically to treatment decisions for unrepresented patients until a search turns up a surrogate, a court or agency appoints a guardian or the patient regains capacity has prompted Catholic health care systems to set up review processes for ethical decision-making.
The complexities that health care workers face in caring for unrepresented patients include following legal processes for surrogates that vary by jurisdiction and determining what is in the best interest of a person about whose life values care providers know nothing.
Establishing a process
At CHI Health, Kuhnel pulls together a multidisciplinary review committee once an unrepresented patient is identified. The committee's systemic review process is designed to ensure that such patients get appropriate and compassionate care and that responsibility for formulating a care plan doesn't fall solely on whoever happens to be the patient's attending physician. (See related story.)
"What we try to do is automatically prompt the start of that process so that we can look at the issues and questions raised by this type of decision-making situation and do that in a holistic interprofessional way that both supports the unrepresented patients and supports their care teams," Kuhnel says.
Even with an explicit process in place, Kuhnel says the challenge of reviewing the care of an unrepresented patient can be daunting.
"Some of the most difficult case consultations are those centered around unrepresented patient cases because there is not always agreement about the various options, and the most important voice — the patient's voice — is the hardest to hear," Kuhnel says. "The gravity of what we are considering for patients when they are not able to clearly tell us what they would want is very heavy sometimes, especially when it involves significantly life-altering decisions."
Kockler says there are myriad ethical concerns that figure into any situation involving unrepresented patients. One is that, as decisions are being made, the focus of the care team must not shift from the humanity of the patient to other matters, such as the procedure under consideration.
"There's often a temptation or a moral hazard in getting caught up in the particular mechanics of a decision or treatment plan and losing sight of the person at the center of it all," he says.
Other issues are how long a search should go on to find a surrogate to make medical decisions for the patient before care teams start making them and how to ensure that biases don't creep into decisions that providers end up making on patients' behalf.
Kockler says those ethical considerations are weighed whenever unrepresented patients are identified across the Providence St. Joseph Health system, which spans seven states and includes 51 hospitals and more than 1,000 clinics. However, the process for deciding on care plans for unrepresented patients varies and depends on circumstances.
At Providence St. Joseph Health's larger hospitals, medical decisions for unrepresented patients with complex comorbidities generally undergo a review by representatives from across multiple disciplines. At rural critical access hospitals, the treating physician's care plan gets a less expansive review involving a physician who is not on the patient's care team.
Whatever the process, Kockler says ethical considerations are not overlooked. "An ethics consultant is usually brought in in some form or fashion to support and facilitate sound decision-making," he says.
'Best interest principle'
McCruden says SSM Health's process for making care decisions for unrepresented patients in its four-state service area is shaped by the patient's health situation. He points out that the care considerations for a person with a terminal illness who is nearing death are different than, say, those for someone who has been in a crash and has sustained injuries that he or she will survive but without ever regaining the capacity to make care decisions. "You can't have a process that applies to every type of patient because they're not a homogenous population," McCruden says.
In any case involving an unrepresented patient, he says, SSM Health care providers follow "the best interest principle." "For the most part, their best interest is you're going to take care of their medical needs, you're going to err on the side of life," he says.
But in some cases, that goal to preserve life might not be in the patient's best interest, such as when keeping someone alive requires artificial life-support measures.
To assist clinicians in making medical decisions for those who can't make their own and have no known representative, SSM Health social workers and case managers who are on the care teams offer their expertise and bioethicists and ethics committees are brought in as needed for consults, McCruden says.
"One of our first values that we talk about is compassion, so we want to make sure that we're compassionately responding to all of our patients' needs and certainly that would include the unrepresented patients," he says.
Even though he is confident that SSM Health, as well as most medical providers, strive to provide the best and most ethical treatment for unrepresented patients, McCruden says that responsibility shouldn't be left solely up to the medical community. He sees it as incumbent upon health systems and providers to push for government policies and laws that bring clarity and consistency to how decisions are made across systems and across the care continuum.
An example he points to is the Uniform Health Care Decisions Act that some states have passed. The comprehensive act covers a multitude of decision-making issues, including setting up rules for appointing medical surrogates and simplifying the process for advance health care directives.
"I think it is important for us in our advocacy effort and as physicians and clinicians and health systems to advocate for the passage of these types of laws so that we can help our patients and protect them," McCruden says.
Ethicist leads effort to set up consistent review process for unrepresented patients
David Ozar is a founder of the Unrepresented Patients Project for Illinois, an initiative aimed at bringing clarity and consistency to how care providers decide on treatment for patients with no one to speak for them.
Ozar is a philosophy professor emeritus at Loyola University in Chicago and a longtime member and consulting ethicist for the Institutional Ethics Committee of NorthShore University Health System in Evanston, Illinois, which provided the resources for initiating this project. He taught medical ethics for years and continues to study and write about issues related to unrepresented patients.
Ozar bemoans the lack of a systematic and ethics-based approach to how providers make care decisions for this population. "It just seems to me to be a shame that almost nobody seems to be thinking about this seriously," he says.
In his research, Ozar says he has turned up various examples across the nation of efforts by hospitals or health systems to establish a systemic process for making care decisions for unrepresented patients. None have been put into wide use, that he is aware of. Meanwhile, laws covering care for these patients vary from state to state and the mechanisms they set up can be slow and cumbersome.
As he explained in an article he wrote in July 2019 in the AMA Journal of Ethics: "In most states, with only a few exceptions, there is only one legally authorized decision-maker for such patients: a guardian ad litem is appointed by a judge to make medical decisions. In most jurisdictions, however, this solution usually takes longer to implement than a treatment decision can be put on hold. It is also expensive, and often guardians have heavy caseloads and know little about the patient."
Ozar identifies three major ethical concerns about how important medical decisions are made for unrepresented patients. The first is that existing legal mechanisms vary by jurisdiction, generally are slow to kick in and often provide poor representation for patients.
The second concern is that unrepresented patients are cared for by hospitalists or attending physicians who rotate and who might have differing views about what constitutes proper goals or care plans. The third is about the complexities of determining what is in the best interest of a person about whose life values care providers know nothing.
The Unrepresented Patients Project for Illinois proposes that the medical decisions for these patients and goals of care plans be determined in consultation with committees of at least three people with differing perspectives, such as a physician, a social worker and an ethics committee member, who aren't on the patient's care team.
The supporters of the project hope to find a health system or hospital that will pilot their proposal and show that it's workable and effective. Their ultimate goal is to get the process adopted statewide, even if that requires legislative action.
Ozar had recruited about 100 people affiliated with hospital systems across the state to work with him on the project before the COVID-19 pandemic drew their attention away. He has plans to regroup and resume the effort soon.
— LISA EISENHAUER
Who is an 'unrepresented patient'?
The Unrepresented Patients Project for Illinois, a statewide initiative aimed at ensuring that ethical decisions are made on behalf of incapacitated patients, defines an unrepresented patient as someone who:
- Is facing an important medical decision.
- Is not capable of making an autonomous decision about this matter at the relevant time and is unlikely to recover this capacity before the decision needs to be made.
- Has no advance directive.
- Lacks an identifiable substitute decision-maker or legally authorized representative.
In addition, there must be no evidence from the patient's past or from other parties that would support a reasonably conclusive judgment about what the patient would likely choose in the present situation if that person were capable.
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