April 3, 2023

5 Questions with Dr. Tom Mouser: Advance Care Planning

April 16, National Healthcare Decisions Day, is an initiative encouraging families to have frank discussions about end-of-life health care wishes. When put into writing, those health care wishes can become advanced directives – documents that provide guidance and instructions for those entrusted with a loved one’s care. We talked to EveryStep chief medical director Dr. Tom Mouser about the importance of advance care planning.

Q: What is advance care planning?

Dr. Mouser: In general, anytime we talk about advance care planning or advanced directives, what we're referring to are conversations about the kinds of medical care and treatments people would want if they're critically ill or in an emergency. The reason it's so important to talk about those things before someone is critically ill or in an emergency is that in that moment, decisions must be made -  often very rapidly. The patient often is not able to be involved in those decisions anymore.

It's important to establish ahead of time what is important to the patient, what they value, and the kinds of things they would want in different scenarios. It's very distressing to family members, loved ones and friends who are in the position to make those medical decisions if they haven't established clarity ahead of time as to what the patient would say if they were able to speak for themselves.

Q: Why is advance care planning important?

Dr. Mouser: When those conversations have not been had and advanced care planning has not occurred, there often is potential for conflict. Even siblings who are very close and have a good relationship can have very different opinions about what to do. It can be very distressing because when you have a difference of opinion. When you feel passionately that one course needs to be taken to honor and love somebody, it's very hard to be convinced otherwise.

It can lead to more distress for the family and a lack of clarity for the providers. When I’m discussing advance care planning with families, I often tell them that their loved one’s journey will end, but the family's journey will go on for the rest of their lives. Living with questions as to whether or not you could have or should have done something different, or whether or not the patient would have been okay with the choices you made can be a very, very distressing thing. The advance care planning process is just as much for the patient and making sure that their wishes are honored as it is for the family and making sure that they have that peace of mind, knowing that they did exactly what they wanted them to do.

Q: What forms are involved in advance care planning?

Dr. Mouser: There are a variety of documents, but they make your end-of-life health care wishes known. The durable power of attorney for health care designates the individual that you want to make decisions on your behalf through a process we call “substituted judgment.” They tell the provider or the physician the kinds of care you have articulated you want. The durable power of attorney for health care only becomes effective when the patient does not have the medical capacity or the ability to speak for themselves because they have been incapacitated mentally or are under the influence of medications that are interfering with the ability to make sound decisions.

Q: What is the IPOST?

The Iowa Physician Orders for Scope of Treatment (IPOST) form is designed to be the most powerful advanced directive out there because it makes clear the full range of a patient’s end-of-life health care wishes through a physician’s order. It is to be available to all of a patient’s health care providers in all medical settings. The form is to make sure your wishes are carried out no matter where you are getting care or treatment. The form is especially important for out of hospital care by non-physicians such as paramedics and first responders.

If you call 911, paramedics have to escalate to the highest level of care, even if you have a living will that says under no circumstances do you want to be hospitalized or have CPR. It has to be done unless there is a physician there to read the living will and give an order based on it. The IPOST is the most definitive and robust tool that we have and there is still lack of awareness about its availability and utility.

Q: Can you change your advance care planning documents?

Dr. Mouser: Absolutely. Advance planning documents are helpful when a patient can't speak for themselves. When a patient can speak for themselves, we certainly want to hear from them and what they think. They can always change their mind. Legally, all the patient needs to say is that they’ve changed their mind, and we change course to adhere to the patient’s wishes and desires.

Download EveryStep’s free advance care planning resources at https://www.everystep.org/services/hospice/advanced-care-planning. Be sure to tell loved ones about your wishes and let them know where you keep your advanced directive documents.

If you or someone your know is struggling, complete EveryStep’s confidential and commitment-free “Find Care” form to receive a phone call from EveryStep’s experts.

Dr. Thomas Mouser, MD, is chief medical director with EveryStep. He is dually board certified in internal medicine and palliative care, having completed his residency at University of Iowa – Des Moines and a fellowship at Stanford University. Dr. Mouser has spent countless hours at the bedside of those with serious illness and chronic disease. In his role, he helps hospice, home care and palliative care patients and their families navigate complex medical decisions as guided by the patient’s goals of care. Dr. Mouser’s fellowship training provided for an expertise in advanced symptom management and communication when working with those with high burdens of suffering. He is passionate about helping his patients reach their best quality of life so they can live life to the fullest.