Annals of Long-Term Care: Clinical Care and Aging. 2014;22(3):34-38.
Affiliations: Geriatrics Division, Department of Medicine, Maimonides Medical Center, Brooklyn, NY
Abstract: The authors detail the impact of guardianship on the care of frail elders. Four case studies, all from a geriatric faculty practice in New York State, highlight complications faced when patients’ agents are guardians. In addition, the authors emphasize the need for guardians’ education and outline two important guardianship laws in New York State: the Family Health Care Decisions Act and the Palliative Care Information Act. Ultimately, this article raises concerns that guardians may not be effectively advocating for their wards and/or setting appropriate goals for them, particularly when palliative care is warranted. Although the article focuses on experiences in only one state, the challenges outlined are encountered nationwide.
Key words: Guardianship, goal-setting, palliative care, pain.
Clinical care should always reflect the wishes of the patient. When a patient loses the ability to express his or her wishes, there are a variety of devices that can be used for communicating these wishes, including advance directives, such as healthcare proxy assignments and living wills; Medical Orders for Life Sustaining Treatment; and any attempt to document important information and values to facilitate patient-centered, end-of-life decision-making. The challenge is that many patients do not have such documentation in place before they lose their ability to make decisions. For example, studies show that fewer than 10% of elderly individuals living in the community complete advance directives.1 This leaves a vacuum of information, increasing the risk that the elderly patient without capacity becomes subjected to care that he or she might not have wanted. Advance directives help clarify a person’s attitudes and values and anticipate the need for this important personal information when it can no longer be articulated.
When individuals can no longer direct their care and have not completed an advance directive, a healthcare proxy speaks on his or her behalf. In the case where no patient-appointed healthcare proxy or family surrogate is identified, the courts can appoint a legal guardian to make healthcare decisions. But guardianship is a legal last resort that occurs when an individual has not completed an advance directive and does not have any obvious surrogates to speak for him or her, necessitating the government to step in to protect the patient’s interests by appointing a guardian. Guardian assignments have become increasingly common, though numbers are not exactly known.2 This article explains the special characteristics of guardians and their healthcare decision-making patterns. Four case examples illustrate how guardianship challenges can actually hinder patients from receiving the care they would have wanted.
Case 1: Person Versus Property
AP was an 82-year-old woman with advanced dementia. She resided at a skilled nursing facility, but was admitted to the hospital following exacerbation of her congestive heart failure and related renal dysfunction. She had a similar admission 2 weeks earlier for the same indications. Her transfer notes did not indicate any advance directives. She had a daughter, but 6 months earlier the courts had appointed a for-profit agency as her guardian.
As AP’s respiratory status continued to decline, the medical staff attempted to clarify her wishes regarding resuscitation. The social workers at the nursing facility noted the existence of a guardian, but were unsure of the healthcare decision-making capacity of this agent. The daughter was also unsure of the process for making healthcare decisions, but indicated that her mother would not have wanted heroic measures or “to be hooked up to machines.” Efforts were made to clarify the steps necessary to make decisions on AP’s behalf, and the guardianship agency noted that court papers indicated that their jurisdiction was over property alone. Hospital protocol required that guardianship papers undergo legal review, which delayed implementation of the patient’s known wishes, as expressed by her daughter. AP’s continued clinical deterioration resulted in intubation and a subsequent attempt at resuscitation, which failed.
This case highlights the confusion healthcare providers and families face when implementing healthcare decisions for a patient without a clearly defined guardian. Although AP had a capable surrogate who knew her wishes, the complicated construction of person versus property ultimately obscured the process and the patient suffered unnecessarily during the final moments of her life. As is often the case with end-of-life decision-making, time is critical. Because guardianship can take so many different forms (eg, protecting the person, protecting the estate, protecting person and estate), when approaching clinical goal-setting, healthcare providers should clarify the type of guardian assigned to a patient and understand what kind of authority this guardian carries.
Case 2: Withholding Treatment
JD was an 87-year-old woman with advanced dementia that rendered her nonverbal and nonambulatory. She was transferred to a hospital emergency department (ED) from a skilled nursing facility due to fever, presumed sepsis, and significant peripheral vascular disease, which resulted in multiple decubitus ulcers of the lower extremity and related osteomyelitis. She had already undergone a right below-the-knee amputation for a similar infection one year earlier. JD had no known surrogates and no known prior wishes. The nursing home petitioned the court for a guardian, and a not-for-profit agency assumed healthcare decision-making for this patient.
Prognosis for JD was poor. She had diffusely inadequate limb perfusion, which would not benefit from revascularization surgery, and she did not have the physiologic reserves needed for wound healing. Subsequently, her court-appointed guardian favored a more palliative approach that returned her to the nursing home for hospice care with a focus on comfort.
JD’s healthcare team, however, considered amputation of the left leg below the knee and of the right leg above the knee. Her physician advocated for an aggressive approach, which reflected both his clinical judgment and his personal religious beliefs. Similarly, surgical consultants would not eliminate the possibility, however small, of benefit from the surgeries, and they were unwilling to label the amputations as futile. However, the acute management of persistent sepsis with multiple courses of antibiotics marginalized a focus on comfort care and this patient’s guardian continued to decline surgery despite feeling uncomfortable proceeding with a more palliative approach without clinical support. The patient died of fulminant sepsis after a 90-day stay in the hospital, during which time amputation was continually reconsidered.
Ultimately, JD’s association with a physician who was personally committed to an aggressive plan frustrated the guardian’s attempts to define a different course for her. The guardian’s request for a second medical opinion could have potentially highlighted the variability of physicians’ assessments and treatment plans, while lending support to a more palliative approach, but this request would have necessitated the court’s involvement. In addition, legal experts agree that judges do not like to rule on cases in which there is conflicting medical advice or a life-and-death decision to make. Individuals with a guardian are often relegated to more aggressive, interventionist care, as judges preferentially defer decision-making in these situations to clinicians.
This case highlights the importance that guardians may encounter regarding healthcare decision-making in life-threatening situations or when considering life-sustaining treatments. Since June 2010, the Family Health Care Decisions Act (FHCDA) has granted guardians in New York State the power to make these decisions.3 But the practical application of the law in this regard is inconsistent. Most guardians consult the court regarding limiting care, such as choosing to decline dialysis or forgoing intubation. In New York State, there have been several successful petitions brought to state courts in the last 2 years to forgo treatment. A common practice by guardians has been to request a palliative care consultation to affirm a plan for comfort, noting that they are not declining a life-sustaining treatment, but rather following another clinical consultant’s advice. Guaranteeing the right of an individual, especially a vulnerable one, to the option of a palliative approach in treatment is compassionate and essential. Since 2011 in New York State, the Palliative Care Information Act has made it mandatory to offer palliative care plans to terminally ill patients.4
Case 3: Private Versus Not-For-Profit
RS was a widowed 88-year-old man with advanced mixed dementia. He was financially comfortable and lived in an apartment with a full-time, private home health aide. He had three sons who lived locally, and he appointed them to collectively serve as his healthcare proxy. Following a brief hospitalization for pneumonia, RS was discharged to home with a home do-not-resuscitate (DNR) order; however, his sons did not unanimously approve the order. This compelled one son to petition the court for a privately paid guardian. A guardian was appointed to direct all healthcare decision-making and the home DNR order was removed.
Following this, the patient was maintained with home medical visits for 1 year. During an acute episode of fever and cough, the guardian advocated for transfer to the ED, as he felt he had no authority to limit aggressive care. In the ED, the patient was intubated, became hemodynamically unstable, and was placed on vasopressors. He became agitated and was restrained and sedated. All three sons were upset to find their father in this condition. After discussions that included hospital lawyers, the guardian, and the sons, the court approved a terminal extubation, and the DNR order was reinstated, along with a do-not-intubate order. The patient survived the extubation and returned home with a home DNR in place under the decision-making agency of the guardian.
This case highlights the importance of considering DNR in a guardianship. While the original conflict between RS’s sons surfaced around the DNR order, which was ostensibly resolved with the appointment of an outside guardian, guardians with healthcare decision-making capacity in New York State traditionally have not considered DNR orders. The particular nature of Article 81, the state legal code that establishes guardians, has also silenced them on DNR decisions.5 This limitation runs counter to the more recent FHCDA, which empowers carefully delineated surrogates, guardians included, to make a broad range of decisions, including with regard to DNR.3 In this case, the guardian, feeling uncertain about his authority in this case, petitioned the court for a DNR during this patient’s subsequent hospitalization.
Another issue for consideration is the motivation of the guardian. When guardians are paid private agents, as was the case for RS’s guardian, their livelihood is linked to their ward’s fate. Therefore, RS’s guardian would lose his compensation upon RS’s death, which might motivate him to take a more aggressive, life-prolonging approach to healthcare decision-making. In the case of a not-for-profit guardian, this would not be a concern.
Clearly, the emotional response of RS’s sons to his suffering while in restraints had an impact on the course of this case. Although the guardian was aware of these circumstances, he had not considered approaching the court for withdrawal of support. This underscores the point that guardians who are not related to their wards lack the same emotional connection to these patients that those who knew these patients well (eg, family members) experience. This lack of emotional connection leads such guardians to assess patients’ suffering differently than individuals close to these patients, thereby impacting goal-setting.
Case 4: Regarding Diagnostic Approach
CC was an 82-year-old woman with moderate to severe Alzheimer’s disease. She received full-time supervision in her home and was ambulatory, conversant, and socially appropriate, but had poor attention and minimal short-term memory. The patient had a recent episode of agitation, which resolved with reorientation over several weeks. She presented as an outpatient after a home care nurse noticed a left breast mass; there was no associated pain or nipple discharge. She was a widow and estranged from her two surviving children; thus, a legal guardian was appointed to her for both person and property.
The guardian accompanied CC to her geriatrician for outpatient evaluation of the mass. On physical examination, a firm 8-cm mass was identified in her left breast. There were associated peau d’orange changes, but no axillary lymphadenopathy. She was referred to an oncology practice that provided coordinated, same-day evaluation by both a breast oncologist and a breast surgeon. She tolerated the examinations and a fine-needle aspiration well. She was found to have hormone-sensitive breast cancer, and anastrozole was initiated for empiric treatment of her cancer; however, it was discontinued after she developed nausea and diarrhea. The pathology results revealed she had triple-negative breast cancer.
Given CC’s limited life expectancy, no further surgical, chemotherapeutic, or radiotherapeutic regimen was recommended. The patient, who increasingly noted fatigue and local pain, was treated with a palliative approach and referred to hospice.
This case demonstrates that with good communication between a court-appointed guardian, in this case from a not-for-profit agency, and a physician who knows the patient, healthcare decision-making can reflect a balance of investigative and palliative approaches. Given this patient’s dementia and her history of recent agitation, her physician suspected that the stress of multiple visits and procedures for evaluation would quite likely predispose her to further agitation and possible delirium. In addition, an awareness of this patient’s limited life expectancy due to her dementia informed her physicians’ recommendations around treatment. Due to this collaboration and consideration, this patient’s guardian decided on a plan to limit aggressive treatment, which was consistent with the patient’s previously stated wishes.
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As the elderly population continues to grow, dementia and cognitive decline are becoming more prevalent, making guardianship an even more relevant and pressing issue. In all four of the aforementioned cases, none of the patients had completed advance directives before they lost their
decision-making capacity, which frustrated efforts to provide them with patient-centered care. Many community-dwelling elders have no identified agent for healthcare decision-making, and more than 10% of long-term care residents older than 85 years have no such identified agent.6 At the very least, encouraging all elders with capacity to elect a healthcare proxy would dramatically reduce the need for guardianship.
In 1987, a national study by the Associated Press estimated that there were 300,000 to 400,000 adults in the United States assigned to a guardian.7 The average age of these wards was 79 years, and 64% of them spent some time in a nursing home. To date, this Associated Press report has been the only comprehensive collection of national guardianship statistics.4 A study published in 2006 by the National Center for States Courts roughly estimated that one to three million Americans live under guardianship.8 But experts agree that good information about the guardianship system in the United States is scarce.9 In 2010, the Conference of Chief Justices/Conference of State Court Administrators (CSCA) Joint Task Force on Elders and the Courts tried to rectify this by collecting additional guardianship data through an informal survey distributed via key association listservs, including to members of the CSCA, the National Association for Court Management, and the National College of Probate Judges.10 The survey revealed several key findings: (1) the number of both guardianship filings and caseloads have increased, with caseloads staying open for longer durations due to increased longevity; (2) many local jurisdictions are lacking private professional guardians, placing added strain on the public guardianship system and causing increased reliance on family and friends, yet there may be hesitation by these individuals to serve as guardians; and (3) guardianship monitoring efforts by the courts are generally inadequate due to insufficient staffing and resources.10
American courts assign a guardian to individuals without an identified decision-maker, but standards of practice for guardians’ decision-making often vary widely according to state law and the ruling judge’s interpretation. The Uniform Guardianship and Proceedings Act is used by many states as the template for a guardian’s responsibilities.11 In addition, state legislators often draft complementary Surrogate Consent Laws to further enhance the capacity of guardians to speak for incapacitated patients.12
New York State’s FHCDA, effective June 2010, promised to enable just this kind of improved advocacy.2 But in New York State, guardians continue to note their limitations and ongoing reliance on the courts for approval of healthcare decisions at the end of life, even after implementation of FHCDA. While written law seems to guarantee guardians’ authority, current practice still reflects guardians’ anxiety about the withdrawal and withholding of aggressive care.
Of particular interest to New York State guardians is this state’s Palliative Care Information Act of 2011, which guarantees palliative care consultation for all terminally ill patients.4 Despite FHCDA, guardians have not yet fully embraced their authority to make comfort-care decisions, and discomfort remains when they need to decide on limiting care. Guardians need to understand that there are situations where safeguarding their wards’ survival or quality of life requires following a more conservative approach, as aggressive care is not synonymous with better outcomes; in fact, more aggressive care has been linked to more limited survival in some cases.13
A comprehensive examination of how guardians make decisions is currently missing from the literature. It would be important to know how different types of guardians approach decision-making. For example, do not-for-profit guardians have different considerations than private-pay guardians? Is a more palliative approach to decision-making taken by guardians who personally knew their wards? Does observing suffering motivate a less aggressive medical approach when the guardian personally knows the ward? Healthcare providers should be aware of how guardianship affects advocacy for appropriate care, especially palliative care, as the elderly with dementia are consistently undertreated for pain.14
In October 2011, the National Guardianship Network (NGN), a group committed to effective guardianship practice and law in the United States, held their Third National Guardianship Summit.15 Among the agencies featured were the American Association of Retired Persons, the Alzheimer’s Association, the American Bar Association, and the National Adult Protective Services Association. This collaborative focused on creating standards for decision-making by guardians across the country; however, the only recommendation (#4.1) that directly addressed medical decision-making reinforced the primacy of an advance directive appointing a healthcare agent over any court-appointed guardianship.15 This opinion reflected the consensus of Summit attendees, who asserted that care for the most vulnerable should continue to be patient-centered. Future collaborations between the NGN and physicians should clarify the role of guardians at the end of life; advocates for incapacitated elders must be able to highlight concerns about comfort and palliative care.
With a clearer understanding of the guardian’s role and limitations, physicians can avoid many problems. Identifying the patient’s healthcare agent is the first step. If a guardian is involved, clinicians should clarify, according to state law, what their decision-making boundaries are (eg, DNR, withdrawal of treatment). Physicians should empower guardians to make decisions and advocate on behalf of their wards. Finally, physicians should be aware that guardians often choose more aggressive treatment options. By anticipating this skew in guardians’ goals of care, physicians can better educate these individuals and help them feel more comfortable choosing palliative approaches for their wards.
Guardians are increasingly common and their impact on decision-making for the elderly is growing. More research is needed on the role of the guardian in healthcare decision-making, especially at the end of life. Guardians’ more aggressive approaches to care may divert appropriate focus away from comfort care for vulnerable elders at the end of life; thus, physicians need to better educate guardians on the range of decision-making possibilities, including the value of palliative care.
1. Johnston SC, Pfeifer MP, McNutt R. The discussion about advance directives. Patient and physician opinions regarding when and how it should be conducted. End of Life Study Group. Arch Intern Med. 1995;155(10):1025-1030.
2. Hurme S, Wood E. Introduction to Third National Guardianship Summit. Utah Law Review. 2012;3:1157-1190. http://epubs.utah.edu/index.php/ulr/article/view/844/652. Accessed March 5, 2014.
3. Family Health Care Decisions Act resource center. New York State Bar Association website. www.nysba.org/FHCDA. Accessed January 14, 2014.
4. Astrow AB, Popp B. The Palliative Care Information Act in real life. N Engl J Med. 2011;364(20):1885-1887.
5. New York Mental Hygiene Law Article 81 Proceedings for the Appointment of a Guardian for Personal Needs or Property Management. www.nycourts.gov/ip/gfs/Article_81_Law_2008.pdf. Accessed January 14, 2014.
6. Aw D, Hayhoe B, Smajdor A, Bowker LK, Conroy SP, Myint PK. Advance care planning and the older patient. QJM. 2012;105(3):225-230.
7. Smith GH, Kohl H; US Senate Special Committee on Aging. Guardianship for the Elderly: Protecting the Rights and Welfare of Seniors With Reduced Capacity. www.guardianship.org/reports/Guardianship_Report.pdf. Published December 2007. Accessed January 14, 2014.
8. Wood EF. State-level adult guardianship data: an exploratory survey. Washington, DC: American Bar Association Commission on Law and Aging, 2006.
National Center on Elder Abuse website. Accessed January 14, 2014.
9. Uekert BK, Dibble T. Guardianship of the elderly: past performance and future promises. The Court Manager. 23;4:9-15. www.guardianship.org/reports/Guardianship_of_the_Elderly.pdf. Accessed January 14, 2014.
10. Uekert BK; Center for Elders and the Courts. Adult Guardianship Court Data and Issues Results from an Online Survey. www.guardianship.org/reports/Guardianship_Survey_Report.pdf. Published March 2, 2010. Accessed March 6, 2014.
11. Uniform Law Commission; the National Conference of Commissioners on Uniform State Laws. Guardianship and Protective Proceedings Act Summary. Accessed March 6, 2014.
12. American Bar Association. Default surrogate consent status. Accessed March 6, 2014.
13. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
14. Morrison RS, Siu AL. A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. J Pain Symptom Manage. 2000;19(4):240-248.
15. Third National Guardianship Summit standards and recommendations. Utah Law Review. 2012;3:1191-1205. www.epubs.utah.edu/index.php/ulr/article/view/833/642. Accessed January 14, 2014.
Disclosures: The authors report no relevant financial relationships.
Address correspondence to: Jennifer Breznay, MD, Maimonides Medical Center, 4802 Tenth Avenue, Brooklyn, NY 11219; email@example.com