Choice and control are key elements of quality healthcare that often are lost in today’s over-medicalized healthcare system. Senior living communities can play an important role in helping their residents take control over their medical futures by simply asking what is most important to them in terms of their future medical care.
If a resident’s family and their doctors don’t know what the resident wants and the resident is too sick to tell them, then the resident will get the default: machines, tubes, procedures and loss of control. If the resident wants the default, then there is no need to prepare. If he or she would prefer something different, however, then you can help the resident understand that the choice is in his or her own hands.
Advance care planning is a process of asking residents what is most important to people in the event of future serious illness or loss of ability to make their own decisions. This process is appropriate for all senior living residents — no matter what their age or health status. Indeed, the best time to plan is when things are stable and before a crisis arises, when residents and family members are faced with difficult and time-sensitive decisions under stressful conditions.
Advance care planning conversations allow people to think about what they would want when they get sicker; state their values, goals and preferences for their future medical care; and prepare for medical decision-making. It also involves thinking about and naming someone that the older adult trusts to make medical decisions for him or her if the resident no longer is able to make his or her own decisions — the healthcare agent or proxy. This person usually is a family member but does not have to be.
Studies have shown that people who engage in advance care planning have greater satisfaction with their care, feel more in control and are more likely to receive medical care in line with what matters to them most.
Advance care planning often is focused on completing paper forms — including documentation of a healthcare proxy and wishes in an advance directive. But even a simple conversation can help older adults feel more empowered to identify and ask for the care that they want; share those wishes with their loved ones, doctors and staff; and begin to adapt to the reality of changing medical circumstances.
And yet, roughly two-thirds of all adults — even those with serious illness — have not engaged in advance care planning, according to the Centers for Disease Control and Prevention. Many doctors lack the training, time and resources to have these discussions in busy clinics. Meanwhile, people often feel unprepared to make medical decisions and feel overwhelmed by what look like complicated advance directive forms.
How senior living communities can make a difference
In an effort to incentivize busy clinicians, the Centers for Medicare & Medicaid Services began reimbursing clinicians (doctors, physicians assistants and nurse practitioners) in January 2016 for conducting advance care planning discussions with Medicare beneficiaries. But a survey conducted a few months later by the Cambia Health Foundation showed that only 14% of eligible Medicare providers were billing for advance care planning: the majority of clinicians and patients still were avoiding these important conversations.
This is where senior living communities can make a difference with systematic and routine programs to support advance care planning for their residents. There are three key ways for senior living facilities to go about this:
First, communities can partner with their local health institutions to provide advance care planning support for residents. Both health systems and nursing homes now have financial incentives to prevent or reduce avoidable hospital readmissions and emergency department visits, strengthening the business case for co-investment in an advance care planning effort that can improve the quality of care.
Second, senior living communities can train their own staff members to facilitate advance care planning conversations. Multiple online training curricula for these conversations now are available with associated continuing education credits for nurses, social workers and physicians. These include the Conversation Project, Respecting Choices, and my own organization, the Center to Advance Palliative Care.
Third, provide the education and tools to support residents to do it themselves. A recent study from Rebecca Sudore and colleagues at the University of California, San Francisco, found that a user-friendly website written in plain English (and also available in Spanish), www.prepareforyourcare.org, and simplified advance directive form could be highly effective in empowering older adults to plan for their future medical care. The PREPARE website uses short video stories to guide users through five planning steps focused on values, preferences and communication. The study found that 35% of older adults had evidence of advance care planning in their medical records after receiving both of these simple decision-making tools, and 25% had evidence after receiving only the advance directive. Importantly, these PREPARE interventions required no direct clinician involvement, training or education.
Advance care planning is one of the best ways to give people control, empowering them to have a real voice in their own healthcare. Senior living communities can make a big difference in supporting the quality of life and quality of care of their residents by supporting them in making their wishes known.
Diane Meier, M.D., FACP, director of the Center to Advance Palliative Care, a national organization devoted to increasing the number and quality of palliative care programs in the United States. She also is vice chair for public policy; a professor of geriatrics and palliative medicine; the Catherine Gaisman Professor of Medical Ethics; and founder and former director of the Hertzberg Palliative Care Institute, all at the Icahn School of Medicine at Mount Sinai in New York City. She is the recipient of numerous awards, including the 2008 MacArthur Fellowship, and has published more than 200 original peer review papers and several books.
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