In 1990 Congress passed the Patient Self-Determination Act with the goal of giving people an opportunity to express in advance their values and preferences for medical treatments in a future medical crisis. Healthcare providers were tasked with informing patients about their rights under their state’s law to make such decisions about future medical care.
Since then, the States have passed a broad range of laws designed to operationalize this goal of patient self-determination, spelling out the mechanisms for patients to complete and execute advance care planning documents law to provide recognition under state law for their preferences for future medical care.
“State forms” established by each state with safeguards against abuse are recognized as the state’s standard for patient self-determination, even if they aren’t always as user-friendly as we might wish. In most cases, the state form is not required for an expression of patient self-determination, but they are favored by weight of tradition and legitimacy. The state forms can let consumers down, though, says Dr. Stephen Bekanich, co-founder of Iris. They are typically written in dense, legalistic language that can be discouraging for the layperson. They may require the signature of witnesses not related to the patient or even of a notary. Typically, they are printed out and completed on paper; some run as long as 15 pages. They are not easy to customize, even though some might provide blank spaces for the person to enter a few additional comments.
“The biggest thing for me is that advance directives shouldn’t have to be in intimidating legalese that might discourage patients from completing one,” Dr. Bekanich says. The forms’ emphasis on checklists also creates a disconnect from what’s important to patients and the kinds of circumstances they are likely to face. “Advance care plans ought to be tailored to the needs of each unique individual.”
Still, the state forms are an important path to patients’ expression of self-determination, and Iris advance care planning facilitators will work with the state form whenever possible, within the confines of applicable state law, he explains. They provide a starting point for advance care planning discussions, but Iris also uses a proprietary Goals and Planning Summary (GPS) document that tries to capture in readable language what was discussed during the family conference, as a legally permitted addendum to the state-sanctioned form, says Jackie Burns, Iris’s Director of Clinical Programs.
These conversations, conducted on phone or via live video conferencing for as many family members as wish to join, are aimed at extracting the patient’s values, what matters most to them in life, and what would matter in the face of injury, illness or disability. The conversation can be more meaningful if led by a skilled, trained facilitator. “We have the members’ words, and they show up on paper. We strive for extrapolating someone’s goals and values from our family meetings, and bringing those to life in the planning summary,” Burns says. “We’re customizing the document for each individual, to make it usable at the point of care, crafting who this person is and what they are trying to say.” And at the same time, if the state form isn’t used, some people’s preferences may get ignored by medical providers in a time of crisis. “That’s why we try to use the state form whenever possible.”
Not Just Check Boxes
Under the PSDA, each state has had its own ability to create an advance directive law for the state. Different states have had different values and different takes on the rights of patients, reflecting among other things the political and religious culture of that state. Some of the state forms primarily favor check boxes of treatments wanted or not wanted, or else reduce the range of future treatment choices primarily to opting for cardio-pulmonary resuscitation and other aggressive life-sustaining measures or not. That is why naming a health care proxy or durable power of attorney and communicating your values and priorities to that agent is an essential part of the process.
Two other essential steps in support of self-determination include trying to get the form entered into the hospital or health system’s electronic medical record, which has a standardized location for advance directives, and encouraging the patients doctor to have a goals-of-care conversation and make sure that the patient’s goals are being matched to treatment. “Everyone has a different definition of what is desirable or what constitutes acceptable quality of life,” Burns adds. “Some say: ‘I don’t want to be a burden.’ Or ‘Family is important to me.’ Or ‘I prize my independence.’ Okay, what is your minimum acceptable quality of life? For some that means, ‘I need to be upright and active. If I can no longer golf anymore, that’s it for me.” For others, greater emphasis is on interacting with loved ones.
There are a number of advance directive sample documents and templates out there today, some of them attached to online advance directive repositories. But the non-state form that has achieved widest exposure is the Five Wishes document, developed by Aging with Dignity. It provides a structure for making patients think about various choices, and it is recognized by 42 states as a legitimate alternative to the official state form and a legal expression of patient preferences. It also comes in 29 different bilingual editions. Ultimately, the goal is a recognized expression of the patient’s preferences for future treatment.
Iris’ Advance Care Planning process is a comprehensive, high-quality service that includes medical decisions beyond state-specific advance directive forms. For Iris members, often the process of considering values and preferences makes them decide that a previous advance directive they completed no longer addresses their needs. “We find that 88 percent of our members who had an advance directive previously either re-did it or added to it from our family conference,” Burns said. “For the rest, they found value in the conversation even if they didn’t update their document.”
We generate the necessary state specific AD documents, along with our GPS documentation, and focus on distributing them to the point of care so that they can be utilized in case of a medical emergency. Our follow-up service captures changes in patients' health status that may warrant revisiting, regenerating, and redistributing AD documents as their health status changes. Our facilitators also address symptoms and other medical care needs, help uncover social determinants of health and caregiver needs, and make referrals to palliative care, if appropriate. This personalized approach enables better care coordination, enhances the member experience, and improves healthcare outcomes.