In the middle of your craniotomy, your neurosurgeon is tasked with making a critical yet unexpected decision. They consult with your loved ones in the waiting room. Thankfully, you had designated a health care proxy before surgery, and they made an informed decision based on the advance directive you signed. You wake up relieved to know they followed your wishes when you could not speak for yourself.
Practical preparation and advance care planning are action steps that every person should organize for their family, regardless of health status or diagnosis. When facing a brain tumor diagnosis, these steps become even more critical.
A brain tumor diagnosis affects not only the patient but also their family and loved ones. Preparing and organizing these resources and materials can be one of the most important gifts a patient can provide their family members as they navigate their brain tumor experience.
Advance care planning can also alleviate some of the stress and uncertainty for the patient and their loved ones by providing a clear plan for medical care. Especially in case of emergency, this knowledge ensures thoughtful decision making.
“We can’t plan for everything, but we can share what matters most to us with the people who matter most,” said Kate DeBartolo, Senior Director at The Conversation Project, an initiative dedicated to helping people communicate their wishes for care through the end of life. “That can create a foundation to make choices as the need arises. Doing this early, especially upon a serious diagnosis, gives people a sense of some conditional control when so much feels out of control.”
What is advance care planning?
Advance care planning is the process of discussing and documenting a person’s preferences and values to plan future medical care if they become unable to make decisions for themselves. This process can be particularly important for patients with brain tumors, as the treatment of brain tumors can sometimes cause changes in a person’s cognitive abilities and ability to communicate.
To ensure your wishes for medical care are respected and followed, advance care planning includes preparing legal documents and having conversations with your family members and health care provider about your personal preferences. Even after legal forms have been completed and submitted, advance care planning should be an ongoing process that you revisit regularly or as life circumstances change.
“We should all have a say in our care,” Kate said. “It’s important to help people realize they can have that agency.”
Why is an advance directive important?
Whereas advance care planning is the process, an advance directive is a record of that process. These legal documents allow you to articulate how you want to live and be treated while also selecting a health care proxy to speak on your behalf if you cannot do so.
State laws governing advance directives vary, and each state has its own requirements for witnesses, notarization, and more, so you must complete the directive(s) for your state. If you split time between two states, filling out both states’ directives would be ideal to ensure your wishes are respected regardless of where you are.
CaringInfo, a program of the National Hospice and Palliative Care Organization, makes it easy to search for your specific advance directive forms as part of their aim to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services.
Advance directives can include:
This document specifies the medical treatments and procedures you want or do not want if you cannot make those decisions yourself. This document can include instructions for life-sustaining treatment and other medical decisions. Not all states have laws that make living wills legally binding, but you can still share it with your health care proxy to inform them of your decisions.
This legal form allows you to appoint the person you would like to make health care decisions on your behalf if you are unable to do so. Some documents also let you name an alternate person.
First responders must provide CPR if you stop breathing or your heart stops unless they are given DNR orders, also known as prehospital medical care directives. If you want to obtain a DNR order, your physician can share your state’s form with you to complete and then place the DNR in your medical record.
If you would like to donate your brain tissue for research, you can register for potential brain donation with an organization like the Brain Donor Project or Gift from a Child (pediatric patients) once you have made that decision. It’s particularly important to notify your health care proxy of this decision, as they will need to quickly contact the organization upon your passing.
This form typically allows individuals to indicate whether they would like to donate organs or tissues, and in some cases, may enable you to decide the purpose of the donation, such as transplant, research, or education. While patients with brain tumors may have challenges donating organs or tissues for transplants, you can still indicate your intention. If your organs and tissues are not approved for transplant, you may be able to donate for education or research.
These documents do not expire. You can change your mind at any time as long as you are of sound mind and go through the proper course of action required by your state to submit a new or revised form.
When Kayla S. was diagnosed with a brain tumor while serving in the U.S. Air Force, her chain of command required her to complete advance directives prior to surgery.
“They had me sign advance directives and a living will because they didn’t know the outcome,” Kayla explained. “Everything was coordinated from who is going to take my stuff if I die to what I would want in surgery.”
What is a POLST form?
The Physician Orders for Scope of Treatment (POLST) form is a medical order that directs health care professionals on what to do during a medical crisis. It expresses your wishes in an emergency to all health care providers, including paramedics and EMTs, about whether or not to take you to the hospital or attempt CPR. It also indicates the medical treatments you do or do not desire — like feeding tubes and mechanical ventilation — and the care plan you want to be followed.
These forms apply to a smaller portion of the population, typically individuals with a serious life-limiting illness or advanced frailty, and are completed and signed by your health care provider after speaking with you. A patient with a malignant brain tumor may be able to request this medical order.
While an advance directive allows you to appoint a health care proxy and offers guidance on how your proxy should handle future medical decisions, it is not a medical order. A POLST form does not replace your advance directive but complements it as a medical order. Unlike an advance directive, emergency personnel can use this form.
Not all states have POLST forms. For those that do, the names can vary by state.
Where should I keep my advance care planning documents?
Given the unknown of when you will need access to your advance directive or other essential documents, it’s wise to keep it in a safe place that can be easily accessed.
You may designate a specific location in your home and share that location with your health care proxy. You can also distribute copies of the document(s) to individuals who may be involved in your care, like your family or friends.
MyDirectives offers a free place online where you can upload your advance directive and other advance care planning documents to share at any time.
How do I determine the decisions I want to make?
It’s important to reflect on what matters most to you to help you decide what you want to include in your advance directive. By determining your values and what matters to you, you can help contribute to the care plan and ensure your health care providers understand your priorities.
Key questions and prompts to ask:
- What does quality of life mean to you?
- What makes your life worth living?
- Say to yourself, “I want to keep going as long as I can ______.” What activities give you meaning in your life? How would you feel if you could no longer participate in these activities?
- What would matter to you if your time became short?
- Have you seen other family members or friends being cared for at the end of life or following a serious accident or diagnosis? What would you do differently? What parts of their care did you like and would like to experience yourself?
- Do you have cultural or religious traditions that would be important to you at the end of your life?
- Would you like to receive care or hospice care at home if your situation allows it?
- Would you like to donate your brain tissue to research?
For a more in-depth process to determine what is most important to you, complete The Conversation Project’s What Matters to Me workbook.
“We provide some scale questions in the workbook,” Kate shared. “When it comes to treatment, are you concerned about too much or too little care? There’s no right or wrong answer. By showing the range, people will often have an opinion, and that’s what can start a conversation. For example, it might prompt a thought like, ‘Well, I saw what happened with my Aunt Susie, and this is what makes me nervous.’”
Sharing your answers with your health care proxy can help guide their decision-making process.
“Some people may want to do every single clinical trial out there and get as much time as possible,” Kate said. “For others, there might be concern about pain or if they are unable to communicate in a particular way.”
In Atul Gawande’s book “Being Mortal: Medicine and What Matters in the End,” he shares the story of a colleague whose father was heading into surgery. She asked him, “What do you want me to know if they have any questions during the procedure?” He answered, “As long as I can eat chocolate ice cream and watch football on TV, then I’m willing to stay alive.”
In this example, the daughter did have to make decisions when her father developed spinal bleeding. Because she knew he would still be able to watch football and eat ice cream, she told his surgeon to get back in there and do as much as possible.
“What’s often most helpful aren’t only conversations about medical hypotheticals of feeding tubes or CPR,” Kate said. “But rather, what matters most to someone. What would a good day look like? Given what I know about my person, and what the doctors are telling me about their best estimation of what will come next, how can I best honor what mattered to them? Chocolate ice cream and football is a great example. Not too medical of a response, but a great guidepost for someone making decisions.”
Next Up: Selecting Your Health Care Proxy
In part two of our Advance Care Planning blog series, NBTS shares key questions to ask when choosing your health care proxy, along with suggested conversations to have with your patient surrogate.
The content on this website is for informational and educational purposes only. It does not constitute medical, legal, or financial advice. Always consult a professional for your particular needs and circumstances before making any medical, professional, legal, or financial decisions.