Making Hard Decisions

Advance Care Planning means just that; we make plans about our healthcare in advance. Obviously we cannot predict what will happen to our health, but we can make our wishes known as to what treatments and types of care we want carried out when the time comes.

Adults over the age of 18 y.o. (in most states) have the right to manage their health affairs. An important step is to complete the necessary documents in case you become incapacitated – a situation where you are unable to make medical decisions. Keep in mind that you are not relinquishing your ability to decide when you have full capacity.
    
When we assign someone to make our wishes known that person is called the healthcare agent and we fill out the health proxy form. Although it is considered a “legal” document, this form does not require a lawyer’s involvement and it does not need to be notarized. It requires the witnessing of two signatures. But that is the simple part; it tells the world “the who” you assigned to take your place. The critical completion of advance care planning is “the what” – having a conversation with your healthcare agent in order to describe your healthcare decisions in detail. “The Conversation” by Angelo E. Volandes, MD. is a helpful guide, since talking to others is often challenging when the subject is “the unspoken” – the decisions about end-of-life care.
    
In addition to completing the health proxy form and having the conversation, other helpful forms include a living will and/or MOLST/POLST form. These forms list specifics as to what treatments you want done or do not want done. By putting this information in writing and signing it, there is more weight and clarity placed on your decisions. MOLST stands for Medical Orders for Life-Sustaining Treatment. A POLST form is the same document; the “P” stands for “Physician.” With MOLST/POLST, you review your decisions with your provider (doctor, nurse practitioner, or physician assistant depending on the state) and in addition to you signing the form, the provider signs the form. By completing this form, it officially makes your decisions medical orders, and those orders are to be followed when/if the time comes. If you are interested in more details about the use of these forms, more information about advance care planning and ordering these forms (they are free), visit the following link: https://compassionandsupport.org/.
    
The next step is to distribute these forms. They don’t do any good if they remain in your file cabinet. You must give a copy to your healthcare agent, so they can reference your decisions and prove that they are the healthcare agent. You also want to make sure your key providers have a copy of this form, so that includes your primary physician and perhaps any specialists. Some people with severe chronic conditions give a copy to their local ER.
    
Overall, the above advance care planning steps seem pretty simple. Yet, I have served in assisting many families in my career and people are often not prepared for end-of-life decisions. One family member never told her niece, who lived out-of-state, that she was the healthcare agent. The niece had no form and never had a conversation about her aunt’s wishes. Yet when the aunt was dying and unresponsive, the niece had to make the decisions. It is not unusual that healthcare agents have the health proxy form but have failed to obtain a copy of the living will or MOLST form, so they have nothing to reference and are not sure what to do. There are people who have all the forms, but never had the conversation.
     
Even for those who are prepared, people struggle when the time comes to take action. Do you think you will be ready to manage end-of-life decisions? All too often I have witnessed healthcare agents backing off and changing the outcome of what their loved one’s expressed. So, I will pause here; this is where you want to think long and hard about who you trust to be your healthcare agent. It’s a possibility that the one you love the most may not serve you well in this position. We see this happen in our ICUs throughout the country: aggressive interventions taking place when the person did not want this. Then the question becomes: “Who are We Caring for in the I.C.U.?” This is the title of an opinion piece – described as follows.
     
With the pandemic we are reaching the one-million mark for the number of deaths following end-stage COVID. Here is what it looks like: Your loved ones are intubated, in total respiratory failure, unable to ever breathe again on their own; they are unresponsive and nothing more can be done, except to deeply sedate them in hopes that they are not suffering in pain. But  all too often what happens, instead of allowing the person to die, is that family members are not ready to let go. Despite death being inevitable in these cases and even if aggressive treatment is not what the individuals wished for in their advance care planning, we see family members following their own needs and desires. What happened to respecting the wishes of their loved ones?” As the author states in this article: “There is a largely unacknowledged moment in critical care when doctors and nurses shift from caring for the patients in front of us to caring for their loved ones” (https://www.nytimes.com/2022/02/06/opinion/intensive-care-patient-hospital.html?campaign_id=2&emc=edit_th_20220207&instance_id=52367&nl=todaysheadlines&regi_id=38880717&segment_id=81884&user_id=84c20c0fc176cb81ea3bb1ada54911fe).
     
Taking on the role as a healthcare agent requires contemplation. We need to be realistic about our abilities and determine if we are prepared to take on the task. The one serving this role must have compassion for the person dying, while overriding their own grief. There is nothing easy about that.
     
Charlotte Michos is a clinical nurse specialist who values personal-centered care and serves as a Healthcare Consultant in helping others make informed decisions. For more information, email her or call (845) 548-5980.