Advancing Your Prescription For End-Of-Life Planning By Susanna P. Barton

By Susanna P. Barton

The medical world is all about shades of grey and paperwork, a truth that makes go-time decision-making confusing and stressful for us and our loved ones. Let’s stop doing that and start aligning our advance care planning and healthcare decisions before crisis rules the day. The time is now to put the black and white back into our healthcare preparation.

When my father was admitted to the hospital with double pneumonia, we were able to share all the legal medical documents he had meticulously prepared. That included medical directives, who was to be his healthcare power of attorney or healthcare surrogate (my brother), and other directives involving end-of-life care and resuscitation considerations. This was very helpful to my brother and me and allowed us to focus on supporting him. The ICU nurses entered all of that information into his file and all attending providers were well aware of the content. Though there was some grey area around signing a DNR at the hospital, my father was very well prepared for this moment – we were grateful, and relieved!

But this is hardly everyone’s story. Far from it. A January 2019 study by J. Gerontol Nurs published in the National Library of Medicine looked at the prevalence of older adults who were admitted to intensive care units with advance planning documents in place. This study showed only 42.4 percent of critically ill older adults came into the ICU with advance directives. “The relatively low prevalence of advance directives among older adults who experienced critical illness and a relatively high mortality rate (24%) suggests a need for greater awareness and education around AD completion.”

To me, those figures indicate MOST critically ill patients admitted to the ICU are subjecting themselves, family, advocates, and other loved ones to unnecessary stress – during a time when there are 100 million other worries to consider and 19 other geri-drama sources to mitigate. 

We have work to do when it comes to preparing for medical treatment as we age! Before we get into the nuts and bolts of this most essential to-do list, let’s get grounded in why advance directives are so important. Here are a few key points from the same study:

• “Older adults are at risk for serious illness, which may result in ICU admission and the loss of capacity to participate in decision making about their care.”
• “Advance directives, especially those formulated as part of advance care planning conversations, have been shown to increase the likelihood that patients who lose decisional capacity will receive care consistent with their preferences and values.”
• “Older adults in the middle old (75–84) and oldest old (85+) groups had nearly double the odds of having an advance directive, compared with those in the young old subgroup.”
• “Those in the young old subgroup (those aged 65–74) could benefit from targeted interventions aimed at AD completion during routine annual well-visits, at a time when they have full decisional capacity and the opportunity to reflect and discuss options and preferences with their care provider.” 

A study from the Institute for Healthcare Policy and Innovation National Poll on Healthy Aging at the University of Michigan showed similar results and indicated some of the reasons why many adults are ill-prepared. “Among the 54% of older adults who had not completed medical durable power of attorney or advance directive documents, 62% said they had not gotten around to it, 15% did not know how, 13% said they do not like talking about these things, 13% did not think it necessary, 9% said no one asked them to, and 7% were deterred by cost.”

So, what are advance directives and what paperwork should we all begin preparing now? According to the Mayo Clinic website, “Living wills and other advance directives are written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself. Advance directives guide choices for doctors and caregivers if you’re terminally ill, seriously injured, in a coma, in the late stages of dementia, or near the end of life.”

The Mayo Clinic said these documents include:

• A medical or healthcare power of attorney (also called a durable power of attorney for healthcare, a health care agent, a health care proxy, a health care surrogate, a health care representative, a health care attorney-in-fact, or a patient advocate).
• A living will.
• Do Not Resuscitate and Do Not Intubate orders.
• And sometimes a POLST (Physician Orders for Life Sustaining Treatment). “A POLST is intended for people who have already been diagnosed with a serious illness. This form does not replace your other directives. Instead, it serves as doctor-ordered instructions — not unlike a prescription — to ensure that, in case of an emergency, you receive the treatment you prefer. Your doctor will fill out the form based on the contents of your advance directives, the discussions you have with your doctor about the likely course of your illness and your treatment preferences.” 

Let’s dig a little deeper into these directives. A medical or healthcare power of attorney is one of the most important documents to secure. According to HealthinAging.org, a healthcare power of attorney is a document that “allows you to choose a surrogate decision maker (such as a friend or relative) to make your medical decisions if you lose the ability to make them yourself. You should discuss with your surrogate ahead of time the types of treatment(s) you would or would not want in specific situations so that your surrogate has some guidelines if the need arises. It is impossible to imagine all possible situations but discussing what matters most to you to have or avoid will help your surrogate make a decision based on your wishes.”

The National Institute on Aging defines a living will as “a legal document that tells doctors how you want to be treated if you cannot make your own decisions about emergency treatment. In a living will, you can say which common medical treatments or care you would want, which ones you would want to avoid, and under which conditions each of your choices applies.” This is the heart of everything when it comes to how you want to be treated medically as you age. And it also requires a great deal of thought, careful consideration, and conversation to ensure the wishes you outline are respected. As is the case with most Grand Planning efforts, communication is the key! Ideally, a patient should execute both a living will and a health care proxy, as the living will does not always cover every situation and the proxy will have more flexibility and discretion to meet the moment. A living will is an excellent backup, providing what some people call a “belt and suspenders approach” to advance care planning.

The National Institute on Aging also suggests understanding the critical differences between DNR and DNI orders and how they are activated. This information is very helpful, and I will quote the section in its entirety to ensure the facts are properly explained and attributed:

“Do not resuscitate (DNR) order: A DNR becomes part of your medical chart to inform medical staff in a hospital or nursing facility that you do not want CPR or other life-support measures to be attempted if your heartbeat and breathing stop. Sometimes this document is referred to as a do not attempt resuscitation (DNR) order or an allow natural death (AND) order. Even though a living will might state that CPR is not wanted, it is helpful to have a DNR order as part of your medical file if you go to a hospital. Posting a DNR next to your hospital bed might avoid confusion in an emergency. Without a DNR order, medical staff will attempt every effort to restore your breathing and the normal rhythm of your heart.”

• Do not intubate (DNI) order: A similar document, a DNI informs medical staff in a hospital or nursing facility that you do not want to be on a ventilator.
• Do not hospitalize (DNH) order: A DNH indicates to long-term care providers, such as nursing home staff, that you prefer not to be sent to a hospital for treatment at the end of life.
• Out-of-hospital DNR order: An out-of-hospital DNR alerts emergency medical personnel to your wishes regarding measures to restore your heartbeat or breathing if you are not in a hospital.”
• (Note: a DNR order, DNI order, and DNH order all have to be issued by a physician. Patients and families need to make sure the medical staff has issued such orders beyond a caregiver or loved one expressing the patient’s wishes about these matters.) 

The American Association of Nurse Practitioners suggests a POLST is another important medical directive to secure, especially if you or your loved one is in a compromised health position. The NAANP website describes the POLST this way: “Provider Orders for Life-sustaining Treatment (POLST) are portable medical orders that communicate to health care facilities and providers a patient’s wishes for end-of-life intervention, including emergency medical services (EMS). A POLST initiative seeks to use one style of form applicable across all health care settings, signed by a patient (or their surrogate) and their health care provider.”

So, how, when, and where do we start preparing all these critical medical directives? Where do we begin alleviating stress and concern for our loved ones? How can we mitigate medical geri-drama once and for all?

The best first step may be finding an elder law attorney who can provide and authenticate the necessary forms. If you have an attorney already, ask them to refer you to a specialist or perhaps they can help you themselves. Some of these forms do not require attention from an attorney, but certainly, attorneys are familiar with their use and importance. Please note: hospitals are required to ask all patients whether they have an advance directive upon admission and they are required to provide help if a patient doesn’t have one but would like to create one.

However, it also is easy to fill some of this paperwork out on your own. CaringInfo.org includes PDF advance directive forms for every state, or you can find them at this website: USACPR.com.

While doing some research, I stumbled on a very helpful online resource called Prepare for Your Care. This website enables a user to input their preferences and thoughts on important decisions and create a document for use in a healthcare environment. I am not sure how official or legally binding they are, but perhaps it is a useful process.

Once these documents are prepared, seal the deal by promising to execute two final tasks: first, communicate your plans to anyone who will listen, often and with urgency, and second, make sure you have these documents stored in an easily accessible and portable place.

My husband keeps a “grab bag” of his father’s medical paperwork in case he is called to assist at any crisis hospital event. I think that is so smart. If you or someone for whom you provide caregiving needs to be whisked off to the hospital or healthcare provider, you want to make sure you’ve packed more than a toothbrush and a clean pair of underwear. Medical directives and legal documentation are the essentials in this case! And make sure your advance planning documents are entered into your medical record if you are hospitalized!

But the best thing we can do for ourselves is to stay informed about all the things – about our medical conditions, medications, and treatment options. This can be an empowering process for making well-informed health decisions. Add to this keeping good records of your medical history and telling people where they can access them!

Communication is the critical piece when advocating for your health. Communicate clearly with your healthcare providers, yes, but keep your family and friends in the loop regarding how you want to be treated. During those talks, you can address issues like second opinions and medications and their impacts on others. Make sure you share the important stuff, like how you want your pain managed or how much is too much treatment from your perspective. The more people you inform, the better advocate for yourself you are being.

My father had been “mildly communicative” about his healthcare wishes before he was admitted to the hospital for the final time. Though he was prepared with his medical directives and paperwork, it would have made a lot of things less “grey” at the hospital if he’d been a chatterbox about his expectations. Black and white, direct and ongoing conversation can mitigate all kinds of misgivings, fear, and guilt. The more and more clear, the better!

Being your own best medical advocate and taking an active role in preparing for your healthcare decisions – and most importantly, TALKING ABOUT IT ALL – fosters a collaborative relationship with healthcare providers and families that can make hard choices more manageable. By staying informed and communicating openly, we can enhance our quality of life and navigate sunset strolls with confidence and dignity.