“Fate Worse Than Death”: Long-Term Care’s Independence Crisis: Aging-in-Place Planning Offers Solutions

A recent study highlighted by NBC Right Now, titled “Fate worse than death: Many long-term care residents lose all independence, study says,” paints a grim picture of life in long-term care (LTC) facilities. The headline is attention-grabbing, and for seniors and families planning for the future, the subject study underscores the importance of aging in place strategies to preserve independence and autonomy.

THE STUDY

Published on April 23, 2025, "Cognitive and Functional Decline Among Long-Term Care Residents," is a retrospective cohort study (meaning an observational study that uses existing data to examine individuals by looking back in time to assess how past variables relate to specific outcomes) involving more than 120,000 Canadian residents followed for up to 5 years.  One aspect of the study was interviewing residents to determine their goals in seeking long-term care and their feelings about long-term care. The study provides a compelling glimpse into older adults’ fears of losing independence, and the trajectories of needs while in long-term care. 

Study Results: Some of the key findings of the study include: 

• Many people lose all independence soon after entering long-term care;

• About 20% lose the ability to make everyday decisions within five years of admission, and 13% become totally dependent for all personal care including bathing, toileting and eating;

• Residents living with dementia may be at risk of spending more time living in states of impairment than residents who have no cognitive impairment; the increased survival of residents with dementia may reflect the natural history of dementia as a progressive terminal disease with great variability in survival time, ranging from 3 to 15 years.

• Advance directives may play an important role in reducing time spent living with severe disability; residents with Do Not Resuscitate (DNR) or Do Not Hospitalize (DNH) orders experience shorter periods of institutionalization while suffering profound impairment associated with a loss of all independence.

• The standard care practice of providing longevity can leave residents in states that they consider "worse than death," contradicting the goals that residents view as most important.

• Despite advance care directives, 25% of long-term care residents have at least 1 transfer to the hospital every 6 months, and many die shortly after a hospital transfer. 

Indeed, in the introduction to the study, the authors write:

"Patients, including healthy outpatients and those with serious illness, consider states such as being “unable to get out of bed,” “unable to communicate,” or “unable to reason or remember” as worse than death, and yet these outcomes are rarely explicitly discussed. [citations omitted].  Pursuing longevity-focused care when a person is living in a state they consider worse than death is contrary to resident-centered principles for which LTC homes strive. However, pursuit of longevity against a patient’s wishes may occur because preferences change when death is imminent and because substitute decision-makers and clinicians are partial toward life-prolonging treatment when clinical outcomes or resident preferences are uncertain."

Researcher Assessments: The researchers released statements regarding their findings and assessments:

• Dr. Ramtin Hakimjavadi, lead researcher, a resident in internal medicine at the University of Ottawa in Canada, and one of more than fifteen medical professionals that authored the study, characterized the findings:

"In interviews, long-term care residents have expressed that loss of independence is more distressing to them than the thought of dying. [Residents aren’t receiving the best care] if we don’t talk about the possibility of severe disability and ask about the circumstances when life prolonging treatments would not be acceptable."

• Senior researcher, Dr. Daniel Kobewka, an investigator at Bruyère Health Research Institute and adjunct scientist at the Institute for Clinical Evaluative Services in Ottawa, advised that: 

“[r]esidents, their family members, and care teams should have open discussions about what quality of life means to the resident, considering the possibility of prolonged disability. Planning ahead can help ensure that future care aligns with personal values, including the choice to prioritize comfort and dignity over life-prolonging interventions.” 

Call to Action: The study represents a call to action. 

• The Health Care Industry:  Clinicians and health care professionals are called to consider critically  life-prolonging treatment, appropriate for the healthy and recovering, as being contrary to the wishes and consent of residents that "follow a frailty trajectory with no clear terminal phase...experienc[ing instead] a progressive decline in cognition and physical function after admission due [for example] to the accumulation of chronic conditions." Care for these residents must be guided by their wishes and goals, ensuring dignity and quality of life for residents and care partners. 

• Residents: Residents should make their wishes and goals explicit.  At a minimum that means executing Durable Powers of Attorney for Health Care, Advanced Directives in the form of a Living Will and Advanced Directives for Dementia, and a broad form HIPAA release in favor of trusted health care decision-makers. Residents and their families should consider a DNR, DNH, and where appropriate, Physician Orders for Life-Sustaining Treatment (POLST). Residents should also consider aggressive, comprehensive aging in place planning, and a robust estate plan to protect a resident's independence, decision-making, and dignity.   

Study Limitations: The authors acknowledge key limitations:  

• First, all studies that use administrative data have a risk of bias from misclassification or incomplete capture of variables, which the researchers addressed by using validated definitions when possible and maintaining consistency with previous research. 

• Second, the study did not stratify data by the type of dementia (e.g., Alzheimer, Lewy body, or frontotemporal dementia) given the available data. Although different dementia subtypes carry distinct trajectories and prognoses, the researchers concluded that their findings reflect residents living with Alzheimer dementia given its prevalence relative to other subtypes.

• Third, the length of stay observed in the study is subject to local admission and aging-in-place policies, which vary by jurisdiction.

• Fourth, while the study aimed to inform resident-centered decision-making in LTC through the identification of resident-important cognitive and functional impairments, resident and caregiver perspectives may differ from those of the patient partners who informed this study. The researcher believe that, nonetheless, their data provides a foundation for communication and future studies to consider functional and cognitive impairments as outcomes for prognostication. 

• Fifth, the  study has limitations in generalizability. The findings are generalizable to regions with a similar LTC population of mostly older adults with frailty and chronic conditions requiring continuous care. However, the  population studied may be older and have higher levels of frailty and health burdens at admission because of the prioritization of home care in Canada compared with regions with less emphasis on home care or with more flexible LTC eligibility criteria. Additionally, the publicly funded single-payer system in Canada may result in a more homogenous population compared with regions using a third-payer system, which may have a more diverse LTC population. This difference may limit the generalizability of our results to other regions.

The Study Is Worthy of Serious Considerations Despite the Limitations

There are number of reasons that this study deserves attention despite the acknowledged limitations.

1. Peer Review and Credibility: Published in JAMA Network Open, a peer-reviewed, open-access journal with a strong reputation the study benefits from rigorous editorial oversight. The authors are affiliated with reputable institutions  and have expertise in health policy and aging, enhancing credibility. No funding conflicts are disclosed, reducing bias concerns.
2. Methodology: A retrospective cohort study afforded the researchers an immense sample size, and a fairly long period over which to follow subjects. The weakness of these types of studies, data quality/bias, was addressed by using validated definitions when possible and maintaining consistency with previous research. 
3. Generizability: There are obvious differences between the Canadian health care model and the U.S. model.  Aging in place planning is public policy in Canada and is heavily subsidized.  The concern was that Canadian residents might be older and in worse health than, say, in the U.S.  Although U.S. commitment to aging in place in Medicare  may not be as robust, there is some semblance of public support, for example, in the adoption of alternatives available in Medicare Advantage Plans, the recent "Hospital at Home" initiative of Medicare, and Medicare/Medicaid's Program of All-Inclusive Care for the Elderly (PACE) program for adults 55+ who need nursing home-level care but can live safely in the community, which provides comprehensive services (medical, social, home care) through an interdisciplinary team, centered at an adult day health center, with in-home support.  More importantly, with the risk of asset loss from long-term care spend down, U.S. residents are much more likely to avail themselves of institutional care alternatives, meaning the populations of LTC residents may not differ dramatically.  Moreover, it appears to me that the quality of care in Canada is higher given that the rehospitalization rate described in the study was an average of every six months, while U.S, residents run an almost one-in-three risk of rehospitalization in the first 28 days of care from just medical "mistakes."
4. Is the Headline "Fair?": The headline, “Fate worse than death: Many long-term care residents lose all independence, study says,” is undeniably dramatic. The phrase “fate worse than death” is emotionally charged, invoking despair and finality. While it risks overgeneralizing, implying that all long-term care leads to catastrophic outcomes, the headline isn’t entirely unfair. Loss of independence is a profound fear for seniors, and the study’s emphasis on this issue aligns with documented concerns. For example, a 2023 New York Times article notes that many aging Americans struggle to stay independent due to a fragmented long-term care system, supporting the study’s premise. The hyperbolic tone serves a purpose: it grabs attention and sparks discussion about a critical issue.

Aging-in-Place Solutions to Preserve Independence

The study’s findings underscore why many seniors prefer to age in place—remaining in their homes or communities with support tailored to their needs. Aging in place planning, a cornerstone of this blog, empowers seniors to maintain independence, dignity, and control. Below are solutions commonly explored here, designed to address the risks highlighted by the study:

• Home Modifications for Safety and Accessibility: Modifying the home to accommodate mobility or health challenges is a proactive step. Common upgrades include installing grab bars, widening doorways, adding ramps, or creating single-level living spaces. These changes reduce reliance on institutional care by enabling seniors to navigate their homes safely. For example, a walk-in shower can preserve independence in bathing, directly countering the loss of control noted in the study. 

• Multigenerational Living: Multigenerational living is a powerful strategy for aging in place, offering financial savings, emotional support, and caregiving flexibility. By reducing reliance on institutional care, families can avoid spend-down and preserve assets, aligning with elder law goals. However, success requires planning. For more see the article: Aging in Place: Multigenerational Living as a Strategy to Avoid Institutional Care and Support Family Caregiving.

• Deploy Technology for Safety, Health, and Communication: Technology serves two purposes.  First, technology use supports cognitive health. Second, technology offers solutions to challenges faced when aging in place that otherwise might demand institutionalization. 

• Revocable Living Trusts for Asset Protection: A revocable living trust, as discussed in our recent article “The Dangers of Last-Minute Estate Planning.” ensures assets are managed and distributed per the senior’s wishes, even if they become incapacitated. Unlike wills, trusts are transparent in asset titling (e.g., on deeds or accounts), deterring manipulation and supporting financial independence. Trusts can also fund home care or modifications, avoiding the asset depletion that forces some into long-term care, and protect against guardianships, and abusive guardians.

• General Durable Powers of Attorney (GDPOA): A GDPOA appoints a trusted agent to handle financial and healthcare decisions if a senior becomes incapacitated. This prevents the need for court-ordered conservatorships, which can strip autonomy, as seen in the Autry case. By ensuring a trusted person manages their affairs, seniors maintain control indirectly, aligning with the study’s call for personalized care.  Structuring trusts to prevent third-party guardians access to trust assets disincentivizes guardians, and helps prevent control of assets being wrestled away from trusted advisors and agents.  

• Aging-in-Place Care Coordination:  In-home care, such as nonmedical caregivers or telehealth services, allows seniors to receive support without leaving home. Emerging technologies like tele-dentistry or remote monitoring, noted in LTC News, enhance access to care for mobility-challenged seniors. Coordinating care through family, agencies, or professionals ensures needs are met without the institutional routines criticized in the study.

• Guardianship Protections and Nominations: Nominating a guardian in a GDPOA or trust ensures that, if guardianship is needed, a trusted individual is appointed. Structuring trusts to limit guardian access to assets, as discussed in “The Dangers of Last-Minute Estate Planning,” preserves the senior’s plan. This protects against the loss of control highlighted by the study, as seniors retain influence over their legacy.   Structuring trusts to limit guardian access to assets, as discussed in “The Perils of Last-Minute Estate Planning,” preserves the senior’s plan. This protects against the loss of control highlighted by the study, as seniors retain influence over their legacy.

• Medicaid Planning for Long-Term Care Costs:  Strategic Medicaid planning, using trusts or asset transfers, can preserve resources for in-home care rather than nursing home costs. Unlike the hasty Medicaid attempts in the Autry case (Dangers of Last Minute Estate Planning), a well-crafted trust allows crisis planning without disrupting the estate plan, supporting aging in place. Consideration of and implementation of asset transfers permissible to qualified family members under Medicaid are more certain and less expensive and disruptive than either monolithic irrevocable transfers so common from trust mills, or crisis planning planning.

• Lifestyle Changes: Simple lifestyle changes can support, protect, and improve cognitive and physical health as well as  emotional and psychological well-being, and build a broader community and social safety net thereby removing barriers and creating opportunities for home and community based care. 

These strategies and solutions, regularly featured on this blog, empower seniors to avoid the institutional settings critiqued in the study. By planning proactively, families can create environments where independence thrives, reducing the risk of a “fate worse than death.”