Advanced Care Plans: Not All They Were Made Out to Be

As a Registered Nurse and a patient advocate, I have talked about care plans since my first days of nursing school. We prepared our care plans in nursing school and were graded on them. But we soon realized that on the floors at the hospital, nurses did not consider the care plans. The nurses teaching us and the doctors and interns we worked with on the floors paid them no mind at all. There were many different plans, medical plans, problem plans, and discharge plans. They were different than Care Plans we want our patients to write. Years later we were encouraging every patient to have what is called an Advance Care Plan (ACP). 

This was the plan that would spell out what the patient did or did not want at end-of-life, should they not be able to express their wishes. We were told someone was going to pay attention to this document. There was Medicare reimbursement for time spent reviewing and discussing the plan. Hospitals and medical systems wanted to check off that this document had been recorded and was in the patient’s medical records. Everyone regardless of health care status was encouraged to complete an Advance Care Plan. New Startups and apps appeared on medical staff’s computers and phones to help make sure that the ACPs were in place. We were told this was the pathway to improved end-of-life care. Choosing a health care agent for if or when you could not make decisions for yourself who would step in and make decisions for you and that A) they know you well and you trust them to speak on your behalf and B) if the first Agent could not do it there was a backup person equally knowledgeable. You are to discuss with your Agent(s) what medical care you would want, and more importantly, what you would not want, if you had a medical event where you may be unlikely to recover or become unable to speak for yourself. Remember this is the only time your Agent(s) become in charge of your care. 

An ACP states if you want prolonged treatment, or you want invasive care to stop, and this information is discussed with your Agent or Advocate. Your Agent and you need to reflect on your personal and religious values, what defines your quality of life, and what treatments you may want or not want. These thoughts and decisions need to be put on paper. 

It is also recommended that, on your phone, you make a short video, including the current date, explaining what you want. It helps to let family members and others know you are cognizant and speaking freely of your wishes. Put this video on a thumb drive and make sure that not only your Agent or Advocate has it but include other family members. 

As a patient advocate, I have offered the service of putting together an Advance Care Plan as a part of my practice. I urge my clients to get their “plan” in place. In my community speeches, someone invariably raises their hand to talk about their experience of having the Advance Care Plan, and all of their documents, ignored in the Emergency Room. A recent online article made me think we need to be sure we are taking a multifaceted approach to getting our end-of-life wishes.

It is stated in the online JAMA Journal article What’s Wrong with Advance Care Planning? R. Sean Morrison, MD1,; Diane E. Meier, MD1; Robert M. Arnold, MD3, “Demonstrated that indeed ACP showed no evidence of improving end-of-life care… a 2018 review of 80 systematic reviews (including 1600 original articles found no evidence that ACP was involved in influencing medical decision making at end-of-life , improving quality of care or improving patients perception or families perceptions of quality of care1”

Advanced Care Plans should lead to better care and outcomes but that is not the case according to these studies, why? People have told me such things as, “when my husband was unconscious last year I tried to tell them what I knew he would want but I was told theirs was the “protocol.” There is the real-world decision-making process that happens, and there is the hypothetical magical scenarios we think will happen with Advance Care Plans. That doesn’t mean we stop trying to get heard and have our wishes followed. 

Having Advance Care Plans and getting them followed involves a great many steps. Firstly, a patient needs to spell out what the goals of treatment are, what values, quality of life, and what preferences that they want to see in different situations when they are no longer able to express their wishes. Clinicians need to be informed of these ideals, as does your Agent or Advocate so they can go to bat for you and be there to be sure that your wishes will be honored as your condition changes. With the Agent/Advocate knowing what your preferences, values, and wishes are, they can be sure to instruct the health care system/clinicians of your plan and the decisions you have discussed and documented. There are many places where this can break down. 

The ACPs may not work when a critical event has taken place, the patient is not able to make decisions for him/herself, especially as we experienced with COVID when the Agent/Advocate is not nearby to voice what to do next, hospitals and medical professionals may act on their own. If the Agent/Advocate is contacted, their choices may not be simple, straight forward and may not be explained in straight and unburdened language. ACPs also may not work when Agents/Advocates are faced with decisions, and physicians are recommending treatments that may go against what the patient had specifically chosen. The Agent/Advocate may be asked to go against the physician’s call. Another situation might be when another family member speaks up and is influencing decisions which may be difficult or maintained. 

We have seen this in practice and other studies have shown that unfortunately, for reasons stated above and some we are still beginning to understand, Advance Care Plans are not making the difference in end-of-life care as we had hoped. To help ensure that your wishes, or your loved one’s wishes are followed, don’t give up. Cover your bases of getting your wishes written, videoed and distributed to all of the people and all of the places that seem appropriate. Communicate all of this information to your Agent/Advocate.

Karen Morin, R.N. is the owner of LA Patient Advocates and a member of PRO’s Wellness Village at ParkinsonsResource.org/the-wellness-village/directory/la-patient-advocates-1. Her business is in Encino, California and she serves Los Angeles County.