“Unrepresented Patients” and Vulnerability: Patients without Decision Makers
Among the most complex ethical decisions that clinical teams face are treatment decisions for “unrepresented patients.” These patients have lost the capacity to make their own decisions and no longer have anyone who is authorized by law to make decisions for them. No family members or “next of kin” exist and no one else is recognized by state law as having the right to represent the patient’s preferences. Generally, these individuals do not have advance directives, and if an advance directive does exist, it does not provide information that is specific enough to guide medical teams treating the patient. These patients have sometime been identified as “unbefriended,” or - for older individuals - “elder orphans,” terms that seem to label or stigmatize unnecessarily the individual for whom decisions need to be made. Yet, these individuals are potentially vulnerable.
In a recent ethics consultation, the medical team determined that a patient with metastatic cancer who did not have decision making capacity and had no known family was declining rapidly. The ethics consultant was requested to consider whether a do not resuscitate (DNR) order was appropriate for the patient. During the consult we 1) determined that he did not really meet the criteria for a DNR order and 2) were able to learn new information from the patient that eventually led to our finding long-lost family. The patient was discharged with family for the projected months of his remaining life. The clinical team was incredibly caring and there was no intent to inappropriately decelerate treatment or care, but the course of decision making for this unrepresented patient changed drastically.
The number of unrepresented individuals seems to be increasing, though further research is needed to determine actual prevalence. Unrepresented individuals include older individuals who have outlived family members – an increasing population as baby boomers age and medical technology extends lives. Unrepresented persons also include those with mental or behavioral health impairments; homeless individuals; and those for whom potential decision makers are remote and do not wish to be involved in medical decision making.
One study in the journal Critical Care Medicine in 2006 concludes that 16% of patients in the medical ICU of a metropolitan hospital lacked decision making capacity and had no surrogate decision maker (White et al. 2006, 2056). Another study reports that 5.5% of deaths in 7 geographically diverse Intensive Care Units (ICUs) were of unrepresented patients (White et al. 2007, 36).
An estimate reported in the literature is that 3 to 4 % of those living in nursing homes are unrepresented (e.g., Karp 2004, 21).
How are decisions for unrepresented patients currently being made?
Non-emergent medical decisions for unrepresented patients are generally pressing enough that teams lack enough time to move through the traditional guardian process (which can take five or more weeks in many jurisdictions). In the multiple ICU study mentioned above (White et al. 2007, 34), physicians and ICU teams made decisions about life-sustaining treatment without an official hospital or court review in 30 of 37 patients.
In Georgia, state law provides a mechanism for decisions about resuscitation to be made for these patients, who must be receiving treatment (outpatient or inpatient) from a facility other than a hospice or home health organization. According to GA Code § 31-39-4 (e)(2):
The patient’s attending physician assesses the patient and determines that the patient meets one of three criteria to be legally considered a “candidate for non-resuscitation” (see below) and a second physician independently assesses the patient and agrees.
An ethics committee or panel must concur with the opinions of the attending and second, concurring physician that the patient meets the criteria for non-resuscitation.
Under Georgia law a “candidate for non-resuscitation” includes patients who:
Have a medical condition reasonably expected to result in the patient’s imminent death (imminent is not defined) or
Is in a non-cognitive state with no reasonable hope of regaining cognitive function or
Are determined as a person for whom cardiopulmonary resuscitation (CPR) would be medically futile in that resuscitation would not restore cardiac and respiratory function or would only do so for a brief period of time so that CPR would need to be repeated over a short time period. The law adds: "or that such resuscitation would be otherwise medically futile.”
Beyond DNR decisions, there is not clarity in Georgia law about how other decisions near the end of life (e.g. decisions about withholding or withdrawing treatments that are considered life-sustaining) for unrepresented patients should be made. Georgia did extend in 2010 its list of “authorized persons” who could represent or make decisions to include: additional relatives and an adult friend who was willing to sign an acknowledgement form indicating their knowledge of the patient and willingness to act in the person’s best interest. Georgia also added an expedited temporary medical consent guardian process through the Probate Court system (Georgia Code § 31-9-2 (a) (6) and (7)). Utilization of the temporary medical consent guardian process needs to be assessed further. A 2013 report which shared responses from 9 probate judges about implementation of this new consent process indicated limited presentation to date of petitions to appoint such a guardian and a shortage of persons willing to serve as uncompensated guardians (Georgia Appleseed 2013).
Other states have adopted different legislative measures that support alternative decision making methods. Some states have authorized a physician, either alone or in consultation with other clinicians and/or ethics committee members to serve as decision makers for unrepresented patients. Other states have authorized external surrogate decision making bodies to review decisions.
In 2016 Colorado passed House Bill 1101 which provides for appointment of a physician who is not the attending physician for the patient as a proxy decision maker for the patient. Independent determination of the patient’s decision making capacity must be made (by another physician, advance practice nurse, or a court), and appointment of the proxy physician requires consultation with the facility’s ethics committee or the ethics committee of another facility. The ethics committee and a concurring opinion from a second physician is also required for any decisions about withholding and withdrawing treatment (Colorado House Bill 16-1011).
Also in 2015 a California county superior court ruled against the process that had been in effect for unrepresented residents of nursing homes for 20 years (CA Health and Safety Code 1418.8). The statute allowed skilled nursing or intermediary care facilities to utilize an interdisciplinary team to review and initiate a medical intervention requiring consent for an unrepresented patient (Blaisdell 2015). The court case reflected concerns about protecting the rights of potentially vulnerable, unrepresented nursing home residents who were not notified about the determination of incapacity, the nature of the medical intervention and any opportunity for review.
At the heart of these processes, whether legislatively-supported or health professional determined, is the question of what pathway(s) best respects the rights and interests of the unrepresented individual. Protecting the interests of these potentially vulnerable persons involves ensuring that there is an optimal pathway for decision making in place so that 1) decision making is not unduly delayed, 2) alternatives that may benefit the patient are fairly considered, and 3) patients are protected from decisions that may be harmful. Additionally, such fair processes are important so that healthcare teams are not abandoned in caring for patients.
Processes that allow the attending physician or other members of the clinical team caring for the patient to be the default decision maker for the unrepresented patient are ethically troubling. Though the team is most familiar with the patient’s clinical condition, these team members should not be placed in a conflict of interest position as a hypothetically “neutral” reviewer. An internal review mechanism involving the ethics committee, patient/family advocates, or possibly other care resource teams not directly involved in patient care may provide perspective and in a timely manner. Creation of a “uber” ethics review mechanism, utilizing shared ethics consultation resources across institutions in a region and involving community representative perspectives, seems most promising for a fair mechanism to address these complex cases. Such a mechanism would also need to address adequate training and a pathway for timely response.
Blaisdell, Patricia and Richardson, Lois. 2015. “Court Rules That Interdisciplinary Team Consent Is Unconstitutional.” California Hospital Association News. Accessed 10-28-2017. https://www.calhospital.org/cha-news-article/court-rules-interdisciplinary-team-consent-unconstitutional
Georgia Appleseed. 2013. Caring for Georgia's unbefriended elders: Views from the Probate Bench on the 2010 Amendments to the Surgical and Medical Consent Statute. Atlanta. https://gaappleseed.org/media/docs/caring-for-elders.pdf
Karp, Naomi & Wood, Erica. 2004. “Incapacitated and Alone: Healthcare Decision Making for Unbefriended Older People.” Human Rights 31 (Spring): 20-25.
White, Douglas B., J. Randall Curtis, Bernard Lo, and John M. Luce. 2006. “Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers.” Critical Care Medicine, 34: 2053–2059.
White, Douglas B., J. Randall Curtis, Leslie E. Wolf, Thomas J. Prendergast, Darren B. Taichman, Gary Kuniyoshi, Frank Acerra, Bernard Lo, and John M. Luce. 2007. “Life support for patients without a surrogate decision maker: Who decides?” Annals of Internal Medicine 147 no.1 (July 3): 34–40.
