When it comes to the end of your life, the decision on what kind of medical treatment you want should not be left up to your loved ones or your medical providers. In fact, a study by the National Institute on Aging says people incorrectly guessed nearly one out of three end-of-life decisions for their loved one.

No one likes to think about the end of life, but without advance care plans (ACPs) in place, others could make decisions on your behalf if you are unable to convey them.

OSF HealthCare is taking a more deliberate approach in helping individuals and families through these difficult end-of-life care conversations well before they might be needed. For example, when a person receives a critically ill diagnosis, it triggers an alert in their medical record to make sure there is documentation of an advance directive outlining what a person would and would not want as part of their care goals in a life-threatening circumstance.

Brian Curtis, MD, vice president and chief medical officer for OSF Medical Group, says the critical illness discussion begins with an explanation about the extent of the condition and the prognosis. 

“Mainly it talks about your understanding of your illness, and then I give you my impression of your illness. And then we start having discussions about what your overall plan is, and then our thoughts. And then we start talking about what the next step of?? our plan is, and part of that is usually if you haven't had it done, it would be advance care planning.”

OSF HealthCare providers also have another tool that is built into Epic, the medical record for OSF patients. It offers an End-of-Life Care Index score (EOLCI), which assesses the one-year mortality risk that can help clinicians determine what individuals could benefit from end-of-life conversations and reach out to them to discuss their wishes and care options. The EOLCI score takes in 46 different features including demographics, labs and comorbidities.

Often a medical provider can begin the discussion and then make sure a specially trained advance care planning facilitator continues the conversation with the patient and their family. Preparing for end-of-life conversations is now easier thanks to a new ACP resource page in OSF MyChart. Here, patients can upload any previous advance directive documents, edit their medical decision makers or self-schedule a visit with a trained facilitator.

Advance care planning is covered by Medicare as part of an individual’s annual wellness visit. If you have private health insurance, check with your insurance provider. Talking to a health care provider can help you learn about your current health and the kind of decisions that are likely to come up. For example, do you want a Do Not Resuscitate (DNR) or a Do Not Intubate (DNI) order on file?

Prevents second guessing

Discussing your wishes for life-extending medical treatment, Dr. Curtis emphasizes, can relieve stress on loved ones because tough decisions have already been made by you.

“It does not shift that burden onto somebody else, whether it's your wife, your children, siblings or whatever it may be. It doesn't shift that, and when these people are participating in a discussion with the physician, we have that as a groundwork of what you would want or what you would wish to be done to you. And so that we're respectful of your desires and wishes."

Dr. Curtis also stresses that having a documented medical directive also helps prevent your loved ones from second-guessing a care decision.

“And then it actually assists them in having that closure and then avoiding remorse and guilt of having to make these decisions of, ‘Did I make the right decision? Is this something they would have wanted?’ And then the strife that can occur between family members.”

It’s also important to appoint a durable power of attorney for health care. That requires filling out a legal document that names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself. But Dr. Curtis stresses that your medical directive is a living document. It can change over time.

“Before you were looking for quality of life, and now you’re looking at quantity because you have a graduation or a wedding or a grandchild on the way or something that makes you want to extend it [life]. So, really, it’s not permanent, and it can be changed. It can be revoked.”

The National Institutes of Health recommends you think of your advance directive as a document you review at least once each year and update if a major life event occurs, such as retirement, moving out of state or a significant change in your health.

As we approach national Healthcare Decisions Day April 16, here are some resources to get started with your advance care planning. 

Dr. Brian Curtis

“Over 70% of patients would prefer a setting other than the hospital to spend their last few months of life. We would like to have a patient centered approach and share the options on how they can have their care delivered. Some may feel more comfortable in a hospital environment, but others may want to be home surrounded by family which can happen in our community hospice or hospice home,” says Sarah Overton, Chief Nursing Officer for OSF Medical Group, Home Care and Employee Health. “It can be scary journey, but it doesn’t have to be. Your doctor or care team can explain all the options and you can be in control of the care. At OSF we are here to support our patients and their families through that journey and studies show talking about it reduces patient anxiety.”

Ahead of National Healthcare Decisions Day (NHDD) on Tuesday, April 16, OSF is launching new ways for patients and their families to be proactive when it comes to an end-of-life journey. The day is used as a way to encourage and educate the public and healthcare providers about the importance of advance care planning (ACP).

Resources patients now have: 

• Through OSF MyChart, an online system providing patients access to their electronic medical records, patients can now access tools and resources on an Advance Care Planning page fill out a “Patients Wishes” questionnaire.
• Through MyChart, patients also have the ability to upload any advance care planning documents, enter in health care agent information, and access free healthcare legal documents ahead of their ACP appointment to assist them in their advance care planning journey.
• Enhanced care from medical team to know, understand and respect the patient’s wishes at any time in the patient’s care journey.

OSF care teams will work to connect with the right patient populations and ensure patients, along with their families, take an active and easy role in clearly establishing their goals of care.

“We have started to move into a continuum approach. When we have patients that are identified at risk for illness, and risk for hospitalization, we want to have those informed conversations with the patients and families,” Overton says. “We call those ‘goals of care conversations.’ These would be our physicians and advanced practice providers talking to you and your family to make sure the patient understands their illness, finding out what their wishes are, and seeing how we as healthcare providers can honor them. The benefit is that now we can see that through their entire care journey.”

Steps patients can take:

• Identify who your health care decision makers are that can speak on your behalf when you are unable to speak for yourself.
• Be proactive. Express your wishes and have end-of-life conversations with your family early on and often – as it’s important and things change.
• Keep talking. Continue the conversation with those who may have a say in your health care. The more you talk, the more your loved ones can align with your beliefs, values, and goals for care.

“Naturally, we always think of caregivers as our spouse, parent, or child; but sometimes those people aren’t the right people. So, we really need to talk through what it is that we want with our families. Make it natural. This can be a dinner conversation,” Overton says.

Overton adds that research shows earlier conversations and referrals to palliative and hospice care both prolong life and increase the quality of life.

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