Integrating Supported Decision-Making into Advanced Directives and Estate Planning Documents: Empowering Seniors for Autonomous Aging in Place

Supported Decision-Making (SDM) is emerging as a vital innovation in elder law, offering seniors and their families a way to maintain control over life decisions even as cognitive or physical challenges arise. At its core, SDM is a voluntary process where an individual, such as a senior with early dementia or age-related impairments, selects trusted supporters (family, friends, or professionals) to assist in understanding complex information, weighing options, and communicating choices, without relinquishing final decision-making authority.  These supporters, often referred to as a person's support network, might be formal agents with authority to make decisions, or simply advocates and/or advisors, creating a collaborative framework tailored to the senior’s needs.  

Over the past decade, these agreements have evolved from relatively simple documents that merely identified supporters to substantive tools that integrate with detailed, advanced directives to weave a robust safety net for vulnerable persons and support seniors holistically.  Advance directives, once limited to health care and often focused solely on end-of-life decisions, have evolved to encompass financial management, aging-in-place preferences, dementia care, guardianship avoidance, and private care agreements.  SDM bridges gaps in standard planning documents and strategies,  fortifying them while offering additional layers of protection, whatever the planning objective. This shift relieves caregivers of the more difficult tasks of setting or balancing goals, allowing them to concentrate on the tactical execution of pre-established wishes.  

As our blog has explored in "Rethinking Elder Abuse Strategies: How Prophylactic Planning Can Safeguard Autonomy and Aging in Place," good planning adopts a range of solutions to address problems, weaving a safety net against failure. Incorporating SDM into advanced directives and other planning solutions can support a senior in ways no other single plan or effort could. This article defines SDM, its significance for seniors and families, and how to integrate it into advance directives and estate planning documents for holistic planning. 

SDM for Seniors and Their Families: A Path to Empowered Choices
For seniors, SDM represents a shift from paternalistic and institutional models to a partnership model, enabling them to remain engaged in decisions about healthcare, finances, and daily living despite challenges such as mild to moderate cognitive impairment. It builds self-confidence through skill-building in problem-solving and goal-setting, while studies show it enhances independence and quality of life. Families benefit by serving as supporters without assuming full control, avoiding the resentment or burnout common in informal caregiving. In practice, SDM can adapt over time, beginning with advice on routine matters and evolving as needs change. This adaptability makes it ideal for aging in place, where home-based decisions like hiring aides or modifying living spaces are key. Unlike rigid advance directives focused on medical crises, SDM encourages ongoing dialogue, aligning with the blog's emphasis on preventing exploitation through proactive tools.
For more information regarding the risks and consequences of guardianship, and how to avoid unnecessary and risky institutionalization, attend an Aging in Place Planning Workshop. Benefits of Integrating SDM with Advanced DirectivesAdvanced directives, such as living wills or healthcare powers of attorney, traditionally address end-of-life preferences but often overlook everyday or evolving needs. By integrating SDM, these advance directives become more dynamic:

• Holistic Coverage: SDM expands beyond medical choices to include financial (e.g., budgeting for home care), aging in place, cognitive care, guardianship utilization, caregiver agreements, as well as other legal decisions (e.g., asset protection), filling gaps in standard directives.

• Dementia Care:  By integrating advanced directives for dementia with SDM, seniors provide robust direction as conditions evolve and needs change. 

• Guardianship Prevention: It serves as an alternative or supplement to guardianship, reducing court intervention risks as highlighted in our "Guardianship Abuse" article.

• Family Collaboration: Supporters can assist in understanding complex options, like experimental treatments or mood-altering drugs, ensuring decisions reflect the senior's values.

• Adaptability for Aging in Place: SDM directives and agreements can specify preferences for home-based support, avoiding institutionalization, or preferring the least institutional setting possible for care.
• Care Choices: SDM directives can create different considerations for care choices, often made based on expense, convenience, and/or proximity, requiring instead consideration of factors that are more reliable indicators of favorable outcomes with reduced risk.  

Outcome Benefits

This integration is not just a better process, though it also offers benefits such as reducing stress and minimizing disputes.  Empowering seniors to direct their care trajectory and foster resilience against cognitive changes means more positive outcomes with less health, financial, and legal risk. The contrast in possible outcomes could not be more apparent.  Traditional guardianship, for example, can strip rights and lead to abuse; SDM promotes self-determination by treating support as an enhancement of capacity, not a replacement, thereby nicely resolving the risks of institutional guardianship.  Similarly, unlike traditional aging-in-place approaches, which often abandon autonomy for convenience, SDM empowers directed decision-making, leveraging home care to prevent short-term institutionalization. For instance, a senior with mobility issues might use SDM to choose home-based physical therapy over a rehabilitation stint in a nursing home, supported by a caregiver agreement incentivizing in-home care. 

While traditional care-site selection often prioritizes proximity or ease, SDM encourages a robust investigation of factors that impact outcomes, including for-profit status and private equity ownership of institutions. Care roles shift too: SDM builds a strategic network of supporters rather than a monolithic, almost dictatorial decision-maker, enhancing coordination and reducing the risk of caregiver burnout. In dementia care, traditional reactive, costly, institution-focused approaches contrast with SDM-driven, proactive, home-centric strategies that use lifestyle and behavioral therapies and the implementation of supportive technology to prevent cognitive decline, prioritizing physical, psychological, and emotional support in the least institutional setting possible.  For seniors, this means retaining dignity and independence, allowing them to age in place with confidence. For families, it fosters collaborative roles, reducing the emotional burden of sole decision-making and preventing conflicts. 

Legal Frameworks: State Variations and RecognitionSDM is rooted in human rights principles, such as the UN Convention on the Rights of Persons with Disabilities, and is legally recognized in states like Colorado, where agreements are presumed valid unless made under guardianship. In Colorado, SDM can complement powers of attorney or conservatorships, with agreements requiring notarization or the presence of witnesses to ensure voluntariness. Other states, such as Delaware and Texas, have similar statutes. At the same time, Missouri and Ohio may honor SDM informally through limited guardianships and less intrusive/restrictive alternatives. Nationally, the Administration for Community Living (ACL) promotes SDM as a rights-based model. When incorporating into directives, ensure compliance: agreements can't imply incapacity and must include provisions for mistreatment reporting.Creating an SDM with Integrated Advanced DirectiveTo build this, start with a standard directive and add SDM elements:

• Select Supporters: Choose trusted individuals based on strengths (e.g., one for health, another for finances.  Consider supporters based on strategic or task-oriented involvement.

• Define Roles and Scope: Specify assistance areas, like evaluating treatment risks or communicating with doctors, without decision-making power.

• Holistic Integration: Include preferences, goals, objectives, and specific directions or guidelines in making or implementing decisions (e.g., for experimental treatments, authorizing trials if benefits outweigh risks or for psychosocial care, prioritizing non-pharmaceutical drug interventions, but only for hallucinations or ideations that create a threat of harm to yourself or others).

• Legalize and Review: Notarize, align with POAs, and update annually.

• Periodic Review and Revision:  Review your directions ansd dupporters to ensure that your wishes are clear, correct, and supported by the appropriate people. 

Review the standard and specific advanced directives we have offered as models, revising them as necessary or appropriate.  Consult with an elder lawyer to ensure integration with your estate planning documents, and with a financial advisor to ensure availability of funds to implement decisions.  Finally, discuss your planning goals, objectives, conditions, and needs with a Medicare Specialist to ensure you are maximizing your supporters' ability to fulfill your wishes.  

 

Challenges and Safeguards
Challenges include limited state recognition, risks of undue influence, and access barriers for isolated seniors. Safeguard with multiple supporters, revocation clauses, and attorney oversight.
While this article has provided a general examination of SDM and its integration into advanced directives, it is by no means comprehensive. The landscape of decision-making tools evolves rapidly, influenced by legal reforms, state policies, and individual circumstances, and no single resource can fully capture it. Therefore, remain vigilant and continuously educate yourself through reliable sources such as the ACL, AARP, and local elder law attorneys, while regularly evaluating your personal situation to identify potential risks. By combining awareness with tools, seniors and their families can better safeguard independence and thrive as they age in place. For ongoing support, consult professionals and stay informed.  Your security depends on proactive engagement.

Why Hospice is Integral to Most Aging in Place Plans - Palliative Care Paid for By Medicare

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For those who implement an "Aging in Place" plan, hospice care plays an integral part in the planning.  First, hospice care is "person-centered care" of the type and kind those who seek to stay home want and need. Hospice is "palliative care", a specialized type of care focused on relief from the symptoms and stress of a serious illness, with the goal being to enhance or improve the quality of life for both the patient and the family.  Second, hospice is a benefit paid for by Medicare, meaning that there is no need for "spend down," or planned or unplanned indigence to obtain the care, in most cases.  Simply, Medicaid is unnecessary for most hospice benefits. 

Hospice Care Improves the Quality of Care and Life

Hospice Volunteer
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Numerous studies demonstrate that many seriously ill patients and their families receive inadequate care, characterized by untreated pain and physical symptoms, spiritual and emotional distress, high family caregiving burdens, and unnecessary or unwanted treatments inconsistent with their previously stated wishes and goals for care.  Hospice care greatly improves the quality of care for patients and their families near the end of life. Palliative care services provided through hospice delivered by a team of professionals, including physicians, nurses, social workers, chaplains, home health aides, and volunteers, to dying patients (patients with a life expectancy of six months or less), who are willing to forgo curative treatments, have been demonstrated to greatly reduce symptoms  of distress, improve outcomes for caregivers, provide a high level of patient and family satisfaction, and reduces the use of hospital-based services, including emergency department visits and intensive care unit stays, together with the likelihood of death in the hospital.

Medicare Pays for Hospice Care 

The Medicare program pays a daily rate to hospice providers, who assume all financial risk for costs and services associated with caring for the patient’s terminal illness and related conditions. The hospice program is paid for each day the individual is enrolled, whether or not the program visits the client that day. This enables the program to cover other costs, such as palliative care, and management of the terminal condition plus “related services” such as care planning, on-call services, drugs, medical equipment, supplies and transportation. Payments are made based on four levels of care, distinguished by intensity and setting of services: 

• Routine Home Care, the most common (98% of all hospice days in 2016). With this type of care, the individual has elected to receive hospice care in his or her residence.
• Continuous Home Care (CHC). This care is provided for eight to 24 hours a day to manage pain and other acute medical symptoms. It is predominantly nursing care and maintains the person during a pain or symptom crisis. 
• Inpatient Respite Care. This care provides temporary relief to caregivers by offering temporary care in a hospital, nursing home or hospice facility, where 24-hour nursing personnel are present. 
• General Inpatient Care (GIC). This type of care is provided in a hospital, hospice or nursing home when pain or acute symptoms cannot be controlled at home.

The Quality of Hospice Care is Regulated

The quality of hospice care is highly regulated.  The Patient Protection and Affordable Care Act mandated a Hospice Quality Reporting Program (HQRP) that required that all hospices submit data on quality measures. Medicare Hospice providers that do not submit data face a loss of 2% of the payment increase they would get for the year under Medicare. The law further required that CMS publicly report on quality measures related to the care provided by hospice programs across the country.

In 2017, CMS released the Hospice Compare website to help consumers compare hospice providers based on their reported quality data. The quality measures that are reported by hospices are based on consumer feedback from hospice patients and their family members on aspects of care, such as communication with family members, training family members to help with care, their rating of the hospice and their willingness to recommend the hospice provider. Additionally, the hospice provider completes the “Hospice Item Set,” which includes information on how the hospice considers and addresses patient preferences, assessments and pain management.

Hospice Care Integrates in Supported Decision-making Plans

Hospice Care fits well in an estate and health care plan that implements "Supported Decision-making" precisely because it serves the objectives of most people who are concerned with and consider more than just themselves.  Simply, hospice, like your planning, considers and concerns itself with your loved ones.  For example, bereavement support, which is delivered to family members in preparation for and after an individual’s death (for 13 months), considers and is concerned with your loved ones. Medicare does not reimburse for bereavement support. This support is, nonetheless, required by hospice regulations and is a unique and crucial function of the Medicare hospice benefit.  Another way of understanding this benefit, is that it is a community-based benefit, for which the government does not pay, but which is available to a patient and a patient's family simply because it is humane! 

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Because bereavement support is not reimbursed, hospices attempting to cut costs may, admittedly, see it as an easy place to limit services. For example, a hospice may choose to send a letter with a phone number for bereavement care or ask social workers to assume bereavement responsibilities rather than employ a bereavement counselor to meet with and support families. Some hospice providers may even simply refer the families of their patients to other hospice programs for bereavement support, which circumvents their responsibilities and increases the burden on hospices that do offer complete bereavement services.

Fortunately, nonprofit, community-integrated hospices have been shown to be more likely than their for-profit counterparts to provide certain bereavement services, such as support groups and workshops, and to offer services to the community.  Many nonprofit, community-based hospice programs provide services, such as group therapy, one-on-one grief counseling and specialized programs like grief camps for children. These hospices often serve as first responders for trauma in their communities, regardless of whether the recipients of the grief support or trauma counseling services have family members who utilized the hospice program. For example, a school that experiences the sudden death of a student may rely on its local hospice to meet with grieving staff, students, and affected family.  

Hospice Care Utilizes Volunteers More Likely to Be Concerned with You than with any Other Competing Concern

Why do you trust your spouse, your child, or your most closest friend or loved one, and why do you select him or her as your fiduciary?  Chances are that your answer includes a belief that he or she will consider your interests and needs above their own, and certainly above other less important but competing concerns such as cost, or convenience. The people that you have the most trust and confidence in are those who, because of their love and affection, will consider your needs first.  

Hospice providers utilize volunteers for this same reasons.  Because volunteers are people who volunteer their time, and have no financial or other incentive other than their altruistic desire to "help," they are more likely to consider your needs and wishes as being paramount.  These volunteers are usually people who have themselves benefited from hospice care, and having receive the benefit of the selflessness of others, commit themselves to providing that same benefit.  Most hospice volunteers will, if asked, share their journey and experiences.  

Hospice is the only Medicare benefit that requires community volunteers to deliver a significant portion of patient care hours. Medicare sets a 5% threshold for volunteer involvement.  Some providers struggle to meet this threshold, and the requirement is, unfortunately, not well enforced despite being a condition of participation. Of course, oversight is properly more concerned with quality of care provided than ancillary services.  Nonprofit hospices are, fortunately, leaders in using volunteers. Moreover, non-profit and for-profit providers that well utilize volunteers often expand the typical volunteer role by creating specialty volunteer-driven programs tailored to the needs of patients and families. These programs include: 

• Veteran-to-veteran programs that match patients who have served in the military with volunteers who have also served;
• Pet therapy teams, in which registered animals and handlers visit hospice patients to provide companionship; and,
• Vigil programs, which provide around-the-clock care for patients in the final hours of life.

One study noted that, compared to nonprofit hospices, for-profit and government-owned hospices used proportionally fewer volunteer full-time equivalencies as a proportion of total staff. The use of volunteers by providers ensures that hospice programs have ongoing integration with their local communities. 

The Choice Between Non- and For-Profit

Whatever the statistics, there are good and bad nonprofit and for-profit hospice care providers.  Among the "Supported Decision-making" objectives, then, should be the evaluation and selection of competing care providers.  Only by understanding hospice care, hospice providers, and the competing costs and benefits of different providers can you, and those who make decisions on your behalf, effectively consider and evaluate hospice care, and its providers.  Utilization of government data, such as is available through Hospice Compare, formal and informal interviews, inspections, and visits, as well as advice and counsel of professionals, such as with physicians, health care professionals, socials workers, and elderlaw attorneys, can ensure a more appropriate selection of provider.