While it may be difficult to think about the end of your life and how you want to be cared for during a medical emergency or terminal illness, being prepared for future health complications with tools such as an advance directive can help identify important decisions that you and your loved ones have to make. Below are some Frequently Asked Questions about end-of-life care and advance directives that can help guide you toward making the best decisions for your welfare.
Learn more about the Types of Advance Directives in a previous blog.
What is a terminal condition, and what is considered a life-sustaining treatment?
A terminal condition or illness is considered “life-limiting,” which means it is unlikely that the person will recover, or death is imminent, according to Cancer.org. Terminal conditions include, but are not limited to, advanced cancers, multiple organ failure or some massive heart attacks and strokes. In most cases, life-sustaining medical treatment is any medical intervention or medication that sustains, restores or prolongs the dying process for the terminally ill patient. These may include CPR and the use of an automated external defibrillator, breathing machines, antibiotics and food or liquid given through feeding tubes or IVs.
What is an advance directive?
An advance directive is a legal document that explains how you want medical decisions to be made if you cannot make the decisions yourself. An advance directive helps loved ones and medical personnel make important decisions during a crisis; it’s also where patients designate a health advocate/proxy, who will make the medical decisions on their behalf. Typically, the best person for this role is a close family member or friend. You may outline an order of succession as to who can make decisions for you; if the first person you name as your proxy is unavailable or feels that he or she can’t make the decision, the second person you name can take on that responsibility.
“An advance directive is a great tool for your family and physician to reference as your health changes,” said Kristin Thomas, support services coordinator for Masonic Village Hospice. “This tool can change as you age, or as your life changes, you can go back and update it.”
When should you draft an advance directive?
Ideally, all adults over the age of 18 should have an advance directive on file. The best time to make an advance directive is before you need one, according to the National Institutes of Health. You will have to contemplate what you want at the end of your life. This is a difficult process, not only because it’s hard to confront your own death, but because there are many aspects to consider. For example, do you want your care to be comfort-centered, letting you pass away more quickly but with less pain? Or, do you want treatment that will prolong your life to give family more time to say goodbye? If you don’t have an advance directive and become unable to make medical decisions by yourself, you could be given medical care that you would not have wanted.
Can you change your mind about an advance directive?
Yes. As noted above, you can change your mind at any time about what’s written in your advance directive. You can also revoke it at any time. You should review your advance directive every so often to make sure your wishes are still the same. For example, you may want to make changes if you have a major family change, like a divorce; if something happens to your health care proxy or if they become unwilling to be your proxy; or if you have a new health diagnosis or an existing health condition or illness gets worse. If you change or cancel your advance directive, be sure to let your health care team and loved ones know and replace any copies you may have given them with new ones. This will help ensure there is no confusion if you are unable to make your own decisions.
Is an advance directive valid if the patient is at home?
It may be difficult to honor an advance directive in the event of an emergency while at home. Emergency Medical Services (EMS) teams are required to revive and prolong life in any way they can. Some states allow EMS teams to not resuscitate patients who may have a valid Do Not Resuscitate (DNR) order or POLST (Provider Orders for Life Sustaining Treatment) form, according to Cancer.org.
“Pennsylvania is going to require that you have a DNR (if you do not want to be revived,)” Kristin said. “Your living will, or advance directive form, will not be enough. We tell our patients to keep their DNR or POLST order on their refrigerator. If you’re someone who is ‘out and about’ and has health conditions, it’s also good to keep a copy on you.”
How does hospice use advance directives?
In general, hospice is about upholding the patient’s wishes, Kristin said. “If you don’t have an advance directive, POLST or DNR order, we will work with you through the process. Not everyone who comes to hospice has given it that much thought, such as a 20-year-old given a terminal diagnosis. Patients can talk to hospice – their wishes are always part of the conversation.”
What steps are needed to prepare an advance directive?
As you prepare your advance directive, you’ll need to follow these four important steps:
- Obtain the living will and medical power of attorney forms for your state, or use a universal form that has been approved by many states.
- Choose your health care proxy, or decision maker. This is a person you trust to make medical decisions for you and uphold your wishes.
- Fill out the forms and have them witnessed as your state requires.
- Give copies to your family, your doctor and your health care proxy. The National Hospice and Palliative Care Organization has a list of advance directive forms for every state. Also, check your state government’s website for the most up-to-date forms.
What happens if I don’t have an advance directive?
You will receive medical care regardless of whether you have an advance directive or not. However, there may be a greater chance you will receive the types of care and treatment you want if you have an advance directive. In situations in which the patient is not able to give informed consent for treatment, and there is no guardian and no advance directive, some 44 states have “default surrogate consent laws.” These laws generally provide a hierarchy of authorized family decision-makers who, in descending order, starting with the spouse, can make medical treatment decisions on someone’s behalf, according to the American Bar Association.
What is POLST?
POLST takes your advance directive and makes it a physician’s order. It means the hospital must follow those wishes. “It’s slightly different from an DNR order, which is just about CPR,” Kirstin said. POLST is an approach to improving end-of-life care, encouraging providers to speak with patients and creating specific medical orders to be honored by health care workers during a medical crisis. These forms let you state what types of medical treatments you want if you become unable to make a decision. You can state if you would like CPR if you stop breathing, receive comfort care in your home instead of going to a hospital, whether you want medications and artificially administered hydration and nutrition to prolong life and who can make medical decisions on your behalf. The POLST form is different from, but complements, an advance directive and is recommended if you are in that “life-limiting” phase, Kristin said.
How do you include family in the discussion about an advance directive?
Family is inevitably intertwined with any decision you make about your death, so it’s also important to include them in the discussion. You should explain to family, and possibly close friends, what decisions you made in the documents and why you made them. The more they understand about your wishes during end-of-life care, the better they can make decisions for you in the event that situations you didn’t specifically outline occur. A helpful website, The Conversation Project, gives tools and tips for how to start the conversation with family. You will also need two witnesses to sign any advance directive that you fill out, so the family members you have these conversations with can also be those signatories if you would like. These conversations and decisions won’t be easy, but they are important to have. With these forms filled out, you will have much more control over how you are cared for in medical emergencies. The more you plan in advance, the less family members will have to worry about your care.
“My phrase is usually ‘this is a gift’ you give your family by making decisions ahead of time and sharing it with them so they are not put in a position where they have to guess what you want,” Kristin said. “It’s important to have a discussion with your family, not just to hand them a copy of the advance directive. Make sure everyone has copies. The worst thing someone can do is put the paperwork in a safe deposit box that no one can access. That’s not helpful.”
Advance care planning is a service offered through Masonic Village Hospice, and staff are well prepared to help patients and their family accomplish their health care goals.