Transitions to assisted living
Ryan Holmes is the assistant director of health care ethics at the Markkula Center for Applied Ethics. Views are his own.
Last week, I spoke at an event hosted by Catholic Charities about planning for loved ones who are facing the transition from independent to assisted living after a medical event. The main portion of my talk was about the importance of making decisions based on core values. I also walked through the Center’s Framework for Ethical Decision Making, which outlines five different ethical theories which can help crystalize how a patient’s values could be enacted.
I took three things away from this talk. The first was reflecting on the tremendous burdens faced by those who are making these decisions. When my family faced a decision like this, one of the more striking things was the suddenness of circumstances. Our loved one was living relatively independently until one morning she woke up and couldn’t get out of bed. She went from living on her own to the prospect of living in a skilled nursing facility or sharing her own house with caregivers. Such a sudden shift can be difficult for all involved. Emotions run high and decisions are weighty, adding to the stress families feel and making the task seem that much more daunting.
The second takeaway was the challenges faced by lay caregivers. One participant asked why more children don’t move to take care of loved ones. This is a complex question, as there are a number of potential factors. Caregiving often means moving either yourself or your loved one. It may mean having to take time from work or potentially require leaving a job entirely. And it can be quite stressful. While we may deeply love the person in need of care, it can be hard to rearrange lives to meet the needs of the moment.
The third was the reality of finite resources. Long term care is expensive, regardless of what social support there is. Allowing a loved one to return home can require renovations to a home, such as making doorways accessible, removing thresholds, or refitting bathrooms. Nursing homes or assisted living can be costly, as can hiring caregivers. Even becoming a caregiver oneself can represent a significant financial strain. With varying levels of support from state and national government, it can be quite difficult to provide adequate resources for a loved one in need of long-term care.
In the hospital we tend to focus on the needs and desires of the patient, as they are the center of the encounter. However, as patients move back into the community, there are many other players, who have varying needs and perspectives. With all of these competing needs and desires, it can be hard to filter out what ought to be done.
One way to keep things manageable is to reflect upon what is most important for those affected. Starting with the patient’s values, hopes, and desires is an important first step. Would the individual prefer to be in his or her own home? Is it important to have family and friends nearby? Is it more important to have topnotch care delivered by professionals? From this initial values assessment it can be easier to envision a starting point and trajectory.
Then one can then move to considerations such as who can help provide care or resources? As the list of those stakeholders grows, it can then be helpful to use an ethical theory, like those provided in the Center’s Framework, to guide resolution. What will create the most happiness? What decision will allow each individual to be treated equally or fairly? Which option allows you to act as the kind of person you want to be?
Stressful times can cloud our ability to think clearly about important decisions. Helping a loved one make a major life change in the face of illness can be particularly challenging. But having some idea of the values and preferences of the loved one and of ourselves can provide a helpful platform from which to approach those difficult decisions.