When my dad was dying of lung cancer, all I wanted to do was wrap him in bubble wrap and keep him safe. When he started falling, especially. All he wanted to do was stay independent in his own house, even if it meant falling sometimes. It was difficult to come to some level of agreement with him about how to balance what we both wanted, but ultimately, as a competent adult, his wishes were paramount, not mine. My focus on his safety felt like I was trying to limit his movements, rather than trying to find ways to support his desire to stay independent with other ways to mitigate his risk. At the end of the day, it really was his decision as to how much risk he wanted to assume.
He was a reasonable person and understood that there was a point at which it was too much risk, but he chafed at that. When we tried assisted living, he ended up moving out after a few weeks, telling everyone that he “went over the wall”! Ultimately, he ended up going to my brother’s house for the holidays and stayed until he started hospice a few weeks later subsequently passing away peacefully in my brother’s home. But he was contemplating independent living right up until the week before he entered hospice.
The balancing of risk and autonomy and the assumption of risk is experienced along a spectrum in long term care. The default LTC option in many states is still nursing facility care. While there are some efforts being made to help nursing facility care be more person-centered, the general expectation is that the institution is nearly 100% responsible for what goes on while a person is in their care; choices are limited; and the provider directs a large number of decisions about how residents experience their day to day lives. People reside in these facilities with staff available 24/7 and nursing facilities are at high risk of liability for anything that occurs while a person is in their care.
People who receive their care within a private house or apartment assume the greatest amount of risk. In many cases, there is no need for a 24/7 caregiver to be present in the home and the person is free to come and go around their house, yard, neighborhood or community to the extent that their mobility and resources allow them to do so. While steps can be taken to mitigate some risk, they can still fall, or they can make a mistake with their medication, or they can have any number of other things go wrong. One of the documents they sign when they start receiving HCBS waiver services is an acknowledgement of risk form.
The assumption of risk question is less clear in settings like assisted living. In theory, these are home and community based settings and the assumption of risk falls to the person. In practice, the expectation is that the providers are assuming responsibility for their residents. This assumption is made in many cases by the provider and by family members with expectations that their loved one will be just as safe in assisted living as they are in a nursing facility. It is unclear to me whether or not assisted living is just a less restrictive form of institutional care, or if it is community based care in a congregate setting with supportive services.
This is not a theoretical question. Assisted living is one of the fastest growing services in long term care, particularly for persons living with dementia. Many states fund assisted living as a Medicaid community-based option for persons who might otherwise reside in a nursing facility. Regulation of assisted living varies widely from state to state. Some are licensed; some are licensed residential care facilities; some are unlicensed. Multiple states are having conversations now about increasing licensure requirements as a means of assuring safety for residents. There was a recent GAO report on safety and oversight for persons who receive Medicaid-funded assisted living services that has led to Congressional attention.
This discussion of improving or increasing safety and oversight in assisted living is happening at the same time as states are seeking to implement the HCBS Settings Rule which very clearly sets out regulatory requirements for settings that participate in Medicaid home and community based programs. These requirements are based in maximizing individual autonomy, privacy and choices within their day-to-day lives so that they can receive the full benefit of remaining in the community rather than moving into a nursing facility.
States are the party responsible for making assurances to CMS about safety and well-being of Medicaid participants in home and community based programs. There are several ways that states do this, but the major one is reporting and tracking of critical incidents and remediation of factors that lead to critical incidents. The conclusion of the GAO report is that states may not have systems that are as robust as needed to do this adequately. We anticipate that states will be looking at this closely (possibly with some help from Congress) over the coming months and years.
So states are facing that same balancing act of mitigating risk while facilitating maximum autonomy for persons who receive Medicaid funded long term services and supports outside of nursing facilities.
The apparent dichotomy of “important to” and “important for” in person centered thinking is not an either/or situation. It is a balance. It is possible to have to have both in measure. We all decide everyday what is acceptable risk. Why should expect to give up that autonomy as we age or battle disease, disability, or other impairments? States, providers, funders, advocates, families, and consumers must all work together to reimagine how we provide long term care, finding ways to mitigate risk and preserve autonomy. We should not have to sacrifice one for the other. We can balance individual choice in home and community based and institutional settings with appropriate levels of oversight and accountability. Many us, have worked, or are working to find that balance for our parents; all of us want that balance for ourselves someday.