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July 16, 2023

The Hospital to Guardianship Pipeline

Anita Raymond, LISW, CMC

The full issue, in which this article as well as any footnotes and endnotes appears, can be found here.

“Hazel”, age 89, was recently hospitalized after a fall at home and received surgery to repair her broken hip.  It has been determined that she is unable to return home due to her increased care needs and the condition of her home.  She is now stabilized and ready for discharge to long term care: the hospital discharge planner has made referrals to the local nursing homes, but all are refusing to admit her unless she has a guardian. 

This scenario, and others like it, is garnering attention across the United States and is often referred to as a “hospital to guardianship pipeline.” Problematic as an inelegant solution to a complicated problem, this approach pits healthcare providers against advocates, families, and state law, while leaving patients in legal and practical limbo: stuck in acute care settings they no longer need or in a long term care setting they don’t want following the removal of their decision making rights.  

Systems have historically over-relied on guardianship, leading to a loss of rights and over-burdened courts. New approaches are occurring nationally, including adoption of supported decision-making principles. More and more states’ statutes are recognizing Supported Decision Making as a viable and necessary alternative, as well as the importance of supporting and protecting the autonomy of people with disabilities.  There needs to be a change in how and when we turn to guardianship. This was a focus of the Fourth National Guardianship Summit in May 2021, where advocacy, legal, judicial, scholar, and guardian attendees adopted 22 recommendations around the themes of maximizing autonomy and ensuring accountability: “Six working groups convened to address the rights of persons subject to guardianship; supporting decision-making; limited guardianship, protective arrangements, and diverting guardianship pipelines; rethinking monitoring and addressing abuse by guardians; fiduciary responsibilities and tensions; and developing guardianship court improvement programs.”

Minnesota’s Guardianship Information Line annually fields over a thousand inquiries from individuals subject to or at risk of guardianship, concerned families, and professionals across the health care system, social services, legal and educational agencies, and residential communities seeking information about guardianship of adults with intellectual/developmental disabilities, mental health disorders, brain injuries, and neurocognitive disorders.  With a focus on appropriate use of, and avoiding unnecessary guardianships and utilization of less restrictive approaches, many are relieved to learn that their family member’s or client’s needs can be addressed without the involvement of the court. 
For others, such as hospital professionals (discharge planners, clinicians and risk management) discussions about alternatives to guardianship may be unwelcome given the complexities of their patients’ situations and their need for more immediate solutions.  Suggestions of the need to explore alternatives to guardianship present an untenable situation where hospital staff feel caught between the imminent need for discharge and a seeming inability to arrange a feasible discharge plan that does not involve guardianship.  

Guardianship requests from health care systems for patients who have been identified as lacking decision-making capacity are usually related to:

  • Patient is refusing to consent to recommended discharge plan.
  • Lack of suitable care providers or care settings for the person due to lack of beds, lack of staff to manage complex medical or behavior needs.
  • Need for discharge imminently: perceptions of lack of time to work through alternatives combined with belief that guardianship is a faster, more efficient, simpler way to solve the problem.
  • Nursing Home (or home care, or hospice or other provider) will not accept the patient into care without a guardian or other legal decision maker.

While these needs for a solution involving guardianship seem very straightforward to hospital staff, what they often don’t realize is that statutes and best practices dictate that less restrictive alternatives must be meaningfully tried prior to seeking the removal of decision-making rights via the appointment of a guardian.  Most states’ laws require that the court grant guardianship only if the need for protection and well-being is demonstrated and/or that there are no less restrictive options available.

Problem resolution for these complex situations requires individualized, creative solutions.  Successful approaches are those that both acknowledge the realities facing health care systems and that help them understand the limitations of guardianship, the significance of the removal of patients’ rights, and the ethical and legal requirements to meaningfully attempt and rule out guardianship alternatives.  

Capacity, Consent, and Less Restrictive Alternatives

In the fast-paced world of hospital admissions and discharges, and the need to secure an available bed in a long-term care setting (be it nursing home, assisted living, or other care setting), a guardianship may appear to be the most efficient approach.   But many state laws insist that it be reserved as the last resort, and with good reason.  The powers and duties granted to a guardian are rights that are removed from the person, and decisions made by the guardian with financial and personal authority may be irreversible (such as selling a home or consenting to an amputation).

Therefore, a thorough assessment of the person’s situation, needs, and resources is necessary.  The PRACTICAL Tool guides would-be petitioners through a series of factors, starting with the presumption that guardianship is not necessary in order to give serious attention to identifying the specific reasons guardianship is being contemplated, in order to evaluate whether the identified deficits are due to a treatable, reversible condition or one that is likely to improve with time or by addressing deficits (eyeglasses, hearing aids, cultural or language interpreters, communication boards, etc.) and to ensure, when evaluating decision making capacity, that such decisions are not made until the person is at their best possible level of functioning.  

Additionally, beware of the tendency to question a patient’s capacity because they are making decisions we don’t agree with, or to equate physical or financial inability to meet needs with an inability to meet needs based on cognitive deficits.  The PRACTICAL Tool also reminds us that that neither a diagnosis, a low cognitive or functional screening score, nor an inability to independently arrange for needed care and services is sufficient reason to seek the appointment of a guardian: rather, a thorough exploration of available family, friends, and professionals to help the person receive needed care and supports may be sufficient to meet their needs without the imposition of a guardian and removal of rights.  Though hospital staff may express that they don’t have time to delve into this process of exploring less restrictive ways to meet a patient’s needs, it is what is ethically and legally required. 

Effectiveness and Lack of Resources

It’s important for hospitals to understand that guardianship is a time-consuming, expensive, and often permanent intervention. Further, it is a paper, or consent power not a compliance power: while a guardian can consent to a placement, and with financial powers can contract for and pay for care and services, guardianship cannot ensure compliance by the person.  If the imposition of a guardian would not impact the identified problem, it is a waste of time and money to pursue this intervention and will likely exacerbate problems with a person who is already upset and unwilling to engage in problem-solving conversations. Feeling helpless, angry and frustrated, the person may then communicate these feelings through behaviors that facilities may label as being unmanageable.   

Sometimes guardianship is sought to solve an unsolvable problem: a lack of resources.  This was demonstrated in a recent high-profile case in Minnesota: Cindy Hagen was stuck in the hospital for more than six months. Living with quadriplegia, Ms. Hagen had been living in her own apartment with extensive help from personal care attendants prior to her hospitalization.  When she was medically ready for discharge, they were unable to find sufficient staffing for her to safely go home.  Ms. Hagen would not consent to moving to the few long-term care facilities who had the staffing resources to meet her needs: she only wanted to go home, yet there was insufficient staffing available for her care needs.  Feeling stuck and needing to discharge this patient, the County and the hospital successfully petitioned for the appointment of a guardian, yet there was nothing a guardian could do, when the real issue was lack of resources to meet her needs. 

Facilities Requiring Substitute Decision Maker

Perhaps the most challenging situation hospitals face is when the otherwise appropriate discharge to a long-term care setting (or group home, home care, or hospice arrangement) is delayed because the receiving facility accepts the patient but only on the condition that the patient have a substitute decision maker.  The need for this requirement is understandable, though often not reasonable, practical, or even legal. Facilities must have reassurance that there is a payor source and someone to sign admissions paperwork, but too often, the insistence that a person have a designated decision maker results in inappropriate use of guardianship, or backlog of patients stuck in hospitals when guardianship is not a legal or viable option. 

In addition to concerns about payment, long term care facilities may be concerned about risk management and their own liability: specifically, a fear about a future need to discharge a resident due to the inability to meet the complex medical or other care needs of the resident. This may include instances when a resident’s reaction to their situation, often labeled as “behaviors”, are untenable to the facility or impact other residents’ rights or safety.  Facilities may fear that they will be unable to initiate future discharges or provide adequate care, such as room or medication changes, without a guardian to provide consent.  However, it is never appropriate to proactively remove a person’s decision-making rights for something that may, or may not, occur in the future.  In Minnesota and other states that require petitioners to prove unmet needs as well as which less restrictive alternatives have been tried, for how long, and why they didn’t work, there is no legal basis to seek the appointment of a guardian when there are no current unmet needs, and in the absence of meaningful trial of less restrictive options.   

Guardianship is sometimes the default response, an attempt to seek a fast, uncomplicated response. But Guardianship is neither fast nor without complications.  Further, when systems turn to guardianship prematurely, or as the go-to response, they don’t first explore less restrictive alternatives, sometimes even ignoring or not discovering the existence of previously completed advance directives or financial planning tools, both of which would be viable, legal, immediately available alternatives to guardianship for personal and financial decision making.

Requiring that people with impaired cognitive functioning have guardians as a condition of admission may be discrimination based on disability, and violates federal law regarding Admissions, transfer, and discharge rights: “the facility must not request or require residents or potential residents to waive their rights…The facility must not request or require a third party guarantee of payment to the facility as a condition of admission or expedited admission, or continued stay in the facility”. Further, the Resident Rights states that “the resident has a right to a dignified existence, self-determination… [and the] right to exercise his or her rights as a resident of the facility and as a citizen of the United States. The facility must ensure that the resident can exercise…rights without interference, coercion, discrimination, or reprisal from the facility.”  When one understands that the appointment of a guardian is the transfer of rights from the person to the guardian, this situation must be viewed from a lens of violation of civil rights.  This is an excellent time to involve the Office of the Ombudsman to assist in navigating the conflict and discrimination on the basis of disability.

And yet, hospitals, and their patients, too often find themselves caught between the overly restrictive requirements of nursing homes and the need to discharge patients who are no longer appropriate for the acute care setting, creating financial risk for the hospital and health risks for the patient.  Creative approaches and skilled advocacy by the discharge planner, the hospital risk management team, families seeking placement, and attorneys representing would-be petitioners may lead to resolution that does not involve guardianship.

Supporting the Patient in Decision-Making

It is an unfortunate reality that as our health care systems are working hard to stream-line their services and seek efficiencies in service-delivery and patient care, they are simultaneously turning away from the ability to slow down to meet patients and families where they are at, guiding conversations in ways that promote understanding and agreement rather than fear, defensiveness, and a seeming inability to accept these changes.  Person-centered care is touted as the goal, but the reality is that too often our fast-paced medical systems and streamlined processes demand immediate action for high-impact decisions without time for patients and families to process, grapple and potentially accept these major life changes. A need for a pause to better understand and seek alternatives can look a lot like refusal and a presumption of need for guardianship.

Even people with cognitive impairments may still be able to make decisions when others help them understand the related factors and how decisions about their needs  impact their wishes and goals.  The conversations will likely be different than those with patients without impairments, such as scheduling at particular times of day, be repeated, occur at a slower pace, use communication styles individualized to the patient (pictures/graphics, plain language, etc.), and may be enhanced by the presence of a family or friend to help explain concepts to the patient, or communicate the patient’s meaning to the health care professional.  How the discussion is approached may make a difference in seeking the person’s consent, such as framing the transfer as potentially only temporary and that it can be re-evaluated when (if) the individual regains their strength or helping them understand that having more help may lead to their ability to continue living in their home longer, for example. 

Utilizing Existing Surrogates or Fiduciaries

A Power of Attorney document may exist, enabling the named attorney-in-fact to consent to and pay for care. Similarly, the person may have previously appointed a heath care agent in an advance care planning document, such as a Health Care Directive (check statute for specifics in your state): this agent may be able to consent to placement, as it pertains to a person’s medical care and treatment.  A Representative Payee for the person whose income and assets are limited to Social Security benefits (or Veterans Administration fiduciary), combined with an Authorized Representative to apply for and maintain eligibility for Medicaid benefits may be all that is needed to ensure payment of long-term care expenses and may mitigate the concerns about fears of unpaid bills.

Family or others who are close to the patient may be willing to be involved in making decisions for or with the patient, but not willing to serve as a guardian.  For a variety of reasons (e.g., intimidation of the courts and legal processes, their own past mistakes or encounters with the legal system, fears of angering the patient or other family members’ reactions), an otherwise perfectly appropriate supporter or informal surrogate may decline to be involved if the only possibility offered to them is to serve as a guardian.  Health systems’ policies may support families as informal surrogate decision makers when the patient is incapacitated and lacking a legal surrogate.  In states with default surrogate consent laws, physicians can legally turn to a defined list of default surrogates to engage in health care decision making, without the need for guardianship. 

Appointment of Healthcare and Financial Surrogates

People with impaired decisional capacity may still possess sufficient understanding and hence capacity to appoint a health care agent and/or an attorney in fact.  Capacity is decision-specific, and a patient should rarely be viewed as incapacitated to make any decisions just because they are incapable of making some decisions. 

Referral Processes

Some large metropolitan areas have hundreds of possible discharge locations, but many of the facilities are owned by a few national health systems. For efficiency, discharge planners may fax referrals to many facilities at once, in hopes of finding an appropriate setting with an opening as soon as possible. However, this practice may lead to far more refusals to accept the patient than would happen in phone-based referrals. A nursing home system that uses a centralized intake system may decline admission, not just to one facility but to all the facilities in that entire system.  Also, much is lost in faxed referral systems rather than in relationship-based direct conversations between a discharge planner and a nursing home director of nursing or other admission specialist.  A patient’s medical, social, or behavioral situation may appear far more concerning in a faxed referral than during an actual conversation where nuances can be explained to the receiving facility, providing reassurance that the situation is less concerning than it appears on paper. 

Conclusion and Call to Action

The over-reliance and improper use of guardianship is a complicated, multi-layered problem.  Effective solutions require creative and multi-factorial approaches which go beyond merely identifying and labeling “health care to guardianship pipelines”.  The most successful solutions will be those that acknowledge the needs and perspective of hospitals needing appropriate discharges, the risk and liability concerns of nursing homes and other care settings, all while also zealously advocating for patients to receive timely and appropriate care that does not require an unnecessary loss of rights.  Guardianship is a last resort option. It must be reserved for use only in those situations where the person is truly unable to participate in decision making, there is no other way to ensure their care and safety needs are met, and their autonomy and right to self-determination are honored. 

What is happening in your state?  What creative approaches have you tried?  What laws and policies have been enacted in your area to address this problem?

    Anita Raymond

    Director, Center for Excellence in Supported Decision Making

    Anita Raymond is the Director of the Center for Excellence in Supported Decision Making (CESDM), a program of Volunteers of America MN.  CESDM hosts the free, statewide Guardianship Information Line.  Anita has been involved in adult protection, guardianship, supported decision making and other less restrictive alternatives in direct service, advocacy and training for more than 33 years.  She can be reached at [email protected].

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