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What Is Advance Planning?
The term advance planning refers to planning for end-of-life issues before they come up. For a caregiver, the most important aspect of advance planning is understanding your loved one’s wishes for herself as she approaches the end of her life. This information will help you protect and advocate for her wishes if and when she is unable to.
Specific areas of advance planning include stating healthcare and treatment preferences, preparing wills and other legal documents, thinking about funeral arrangements, and planning financially for what is to come. The Advance Planning Toolkit offers discussion topics, worksheets, and information to help you and your loved one work through the planning process together.
The subjects of terminal healthcare, finances, and estate and funeral planning may be hard to talk about, but if they are not clarified, families may find themselves having to make decisions in the dark. This can lead to disagreements, worry, doubt—even lawsuits. It’s better for everyone’s peace of mind to talk about things beforehand, make decisions, complete legal documents, and get other instructions in writing.
Important Issues to Discuss
Listed below are six important topics of discussion to help you and your loved one prepare for the end of life. Follow the links to specific information and tools that will guide you in each area.
- Beliefs and values. Our personal and spiritual beliefs direct the choices we make about how we live, and how we would like to die. Before you can help your loved one make advance planning decisions, it’s important to know what she values in life, and what is important to her as she nears the end of her life.
- Preferences for end-of-life care. What are your loved one’s feelings about her healthcare now, and as the illness progresses? How does she feel about life-sustaining treatments?
- Choosing representatives. If your loved one becomes unable to speak for herself, who would she like to speak for her on healthcare issues? Financial matters? Handling the estate?
- Financial planning. What plans must be made to ensure your loved one’s financial well-being through the course of the final illness?
- Estate plans. What are your loved one’s wishes for her property and assets after she dies?
- Funeral plans. What are your loved one’s preferences for funeral arrangements?
It’s a Process—Not an Event
Advance planning is not a one-time task you can check off your to-do list. These discussions can—and should—be returned to during different stages of life. For example, your loved one may initially decide against hospice care, but later may wish to reconsider after rounds of chemotherapy or after hearing a positive hospice story from a friend. The following steps are a helpful guideline for how to begin and return to advance planning.
- Reflect and discuss. Advance planning begins with reflecting on personal values and preferences regarding end-of-life issues. Some people prefer to work out their ideas aloud in conversation, while others would rather think and reflect quietly on their own. As a caregiver, you can prompt your loved one to start thinking about the issues by asking questions, or by providing information for her to mull over. See "Starting the Conversation" (below) for suggestions on how to broach the topic of end-of-life planning.
- Make decisions. Reflection and discussion lead to making concrete decisions. For example, once you’ve discussed a loved one’s beliefs and values, and heard what is important to her as she nears the end of life, you can begin to ask specific questions, such as: Under what conditions do you want CPR? Who will be the beneficiaries in your will? Who will speak for you if you cannot speak for yourself?
- Get decisions in writing. Once decisions are made, it’s best to put them in writing, through legal documents like advance directives and wills. Letters, written instructions, and testimonials are also useful for stating preferences besides those in the legal documents. An example might be a letter of instruction about funeral arrangements.
- Inform others. It’s important to convey your loved one’s wishes to others involved, such as doctors, attorneys, family members, executors, and spokespeople.
- Be open to change. The discussions you have with your loved one will more than likely be ongoing, not only because there’s a lot to cover, but because people’s feelings can change with time, circumstances, and new information. Even if you think you’ve got everything sorted out, check in with your loved one as his illness progresses to see if his wishes have changed. Documents, even legal ones, can always be altered.
- Revisit planning when any of the following things change.
- Place of residence, especially moving to a new state.
- Relationship status (divorce, changes in beneficiaries’ status, etc.).
- Major financial changes (getting an inheritance, restructuring investments, selling a house, etc.).
- Major changes in approach to medical care, living situation, etc.
What Advance Planning Can and Can’t Do
We all know that no matter how much we plan ahead, life is unpredictable. Nowhere is this more evident than at the end. Doctors can make informed assessments, attorneys can prepare you for many financial and legal situations, but the reality may turn out to be something you didn’t expect—or want.
Advance planning is best used as a tool to help you prepare as thoroughly as you can, knowing that some things you simply can’t control.
Perhaps the most important thing you can get from advance planning is an understanding of the basic values and needs that inform your loved one’s choices. With that knowledge, you can be more flexible and better able to interpret his wishes in changing circumstances. Good advance planning means you have done enough footwork that you can let go, and let the mysterious process of life and death unfold.
Starting the Conversation
The process of advance planning begins with striking up a conversation about things that many people would prefer not to think about. Whether your loved one is a practical person eager to get things in order, or someone a bit more resistant, raising the subject of end-of-life planning with her requires sensitivity, patience, and a sincere desire to help.
Whenever you speak with your loved one, it’s good to keep the following things in mind.
- Speak to, not about, your loved one, especially when discussing things with a third party in the room, like a doctor or family member.
- Ask her questions, rather than tell her or order her about: “Is it OK if we talk for a minute about getting a nurse to help out?”
- Move closer, rather than raise your voice, if your loved one has trouble hearing.
- Try to speak at eye level as much as you can when your loved one is sitting or lying down.
- Listen attentively to what your loved one has to say.
- Set aside plenty of time. Don’t bring up a sensitive topic a few minutes before you have to leave for an appointment.
Some people may be happy to raise the subject of advance planning themselves, while others might need encouragement from their caregivers. The following suggestions can help you start the conversation with your loved one.
- Take a loved one’s lead if he happens to mention something about his will, or “getting his things in order,” or funeral plans (“I want to be cremated!”). Follow an opening with questions.
- “What do you need to get in order? How can I help you with that?”
- "If you want to be cremated, do you have any thoughts about where you want your ashes to rest?”
- Start with information you already know and build from there.
- “I know you’ve had your lawyer draw up a will. Has he also done your advance directive and power of attorney?”
- Supply informational materials for your loved one to look over before you open discussion. If you think he would respond better to a personal note, try that.
- If your loved one is your parent, appeal to his instinct to care for you.
- “I’m worried that I won’t be prepared to deal with what’s happening. It would help me a lot if we could talk over a few things.”
- If your loved one is your spouse or partner, appeal to your love and shared partnership.
- “This is hard to talk about, but I need you to bear with me and hear what I have to say because it’s important to me.”
- Bring up the subject in the context of healthcare; for example, on the way back from a doctor’s appointment.
- “The doctor says we should go with another round of chemotherapy. How do you feel about that? What if the side effects make you sicker? Can you think of a situation in which you might want to stop treatment?”
It’s common to feel reluctance about discussing end-of-life issues. Let’s face it—the prospect of dying is scary. We think that by avoiding the topic, we can pretend it doesn’t exist. But despite our reluctance, plans need to be made. It’s important to gently persist in our attempts to broach the subject. Following are some ideas to help you work through resistance with your loved one.
- Relate a story about someone you both know who had a difficult time with some aspect of a loved one’s death because of lack of planning.
- “Remember how the Joneses ended up in court? I don’t want that to happen to us. We really need to talk about your estate.”
- “Wasn’t it just horrible what Terry Schiavo’s family had to go through? I want to do whatever we can to avoid that.”
- Appeal to your relationship, as with suggestions #4 and #5 in the previous section.
- “I know you don’t like to talk about it, but it would really help me get through this.”
- Point out the possible consequences of not talking, using specific examples when appropriate.
- “If we don’t talk about this now, I could be put in a bad situation with your kids.”
- “I know what you want, Dad, but what if your wife disagrees? We should make up a power of attorney and advance directive so everyone’s on the same page.”
- Remind your loved one of others they care about.
- “We want to make sure the money you wanted to give to your grandkids is protected.”
- Ask someone your loved one trusts outside the family to raise the issue, like a clergy member or a good friend.
- Have a professional speak to your loved one. A financial planner, attorney, accountant, or representative from a government agency or nonprofit organization can provide expertise and sound, objective advice.
- In the case of a loved one with dementia, a doctor’s assessment and recommendations for treatment may be called for.
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"Getting my dad to give one of us siblings power of attorney was really difficult. His dementia had already progressed to the point where he didn't realize how much help he needed. My siblings and I tag-teamed and each talked him into seeing it as a good safety measure. Finally, while he could still reason, he agreed. Thank goodness we got that done when we did."
- Sue, a caregiver from Minnesota
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