A national survey by The Conversation Project found that 9 in 10 Americans want to discuss their loved ones’ and their own end-of-life care, but only about 3 in 10 Americans have actually had these types of conversations. For older adults, families and close friends, these conversations may be tough to initiate, but they are valuable and necessary for all involved. This guide is meant to help you prepare for these conversations, offer helpful tips for starting a discussion and provide a range of topics for your consideration.
Why Having The Conversation Is So Important
Initiating conversations about health, legal, financial and end-of-life issues may be difficult for you and your loved ones, but having these conversations will ensure that a plan is created that accurately reflects your wishes and prepares and engages those who you love. A conversation can provide a shared understanding of what matters most to you and guide your loved ones
if and when they need to make decisions on your behalf. Planning in advance will save time, energy and money, allowing everyone to think about what they want for the future.
Preparing For The Conversation
Prior to talking openly with loved ones, it may be useful to gather your thoughts. Remember:
Thinking about basic aspects of the conversation may also be helpful. Here are some areas to consider:
Select a time to talk. Holidays, family get-togethers and other special occasions are all times when family and friends gather together, presenting an opportunity to include many of your loved ones in these conversations.
Determine the best location for the conversation. A location you and your loved ones are comfortable with such as your home, on a walk or at a park might make it easier.
Decide who should be involved in the conversation. Maybe it's all your children. Maybe you want a trusted sibling or friend there as well.
Make a list of the topics that are most important for you to discuss. Keep reading for specifics on the many areas that should be covered.
Starting the Conversation
To ease everyone in, certain conversation starters can be used, such as sharing a story of someone else’s experiences or using a letter or video as a starting point. Here are some things you can say to break the ice:
These tips will help as you begin:
Topics To Talk About
There may be a variety of topics you want to address in these conversations. Here is some guidance on possible health, legal, financial and end-of-life considerations. This list doesn’t cover everything you may need to think about or discuss, but it offers a good place to start.
Awareness of any health conditions and the location of useful health information will help avoid any confusion or mistakes later on. Some of the useful health documents include:
For more information on this topic, The Conversation Project’s resource How to Talk to Your Doctor at theconversationproject.org can also be useful when communicating with doctors and nurses.
There are various legal and medical documents where your advance planning wishes can be
recorded to ensure they will be honored when needed. Here are some of the steps to consider in
advance care planning if you having taken them yet:
After completing the legal tools, it is important to make these tools available. For financial planning tools, such as a Durable Power of Attorney, an agent should have access to an original copy and any legal advice should be followed. For a health care advance directive, a copy should be provided to the doctor to place in the medical record. he agent should also have a copy, and should be aware of how to obtain the original document. It is important to continue to review documents and make sure they reflect any changes in circumstances or thinking. For more information on the legal aspects of the conversation, visit www.abanet.org/aging, where you will find resources such as Health & Financial Decisions: Legal Tools for Preserving Your Personal Autonomy and Consumer’s Tool Kit for Health Care and Advance Planning to assist with the conversation.
Creating legal documents is only part of what is needed. Just as important, is talking with family and loved ones about what the documents mean and how you want decisions made, if you are unable to make decisions for yourself. The conversation about your wishes is just as important, maybe more important, than the actual legal documents.
The following explanations of legal terminology may help in your conversations:
Health Care Advance Directive: A general term for a document that provides instructions about your health care. This often includes a Living Will and Durable Power of Attorney for Health Care.
Living Will: A document where you state your wishes about your medical treatment preferences if you become unable to speak for yourself. It helps to ensure your wishes are known and carried out, though it does not appoint an agent.
Health Care Power of Attorney (or Health Care Proxy): This document enables you to appoint another person to make any or all health care decisions for you if you become unable to make your own decisions. You may also include guidelines for those decisions. This helps to ensure your doctor and loved ones are aware of and will respect your wishes. It also helps relieve the stress and conflict caused when family has to guess what you would have wanted.
Durable Power of Attorney (for Property): A document in which you (the “principal”) give legal authority to another person (the “agent”) to act on your behalf when you become too sick or disabled. The appointed agent or agents are whom you want to manage any part or all of your affairs: financial, personal or both. Instructions and guidelines can be included.
Trust: An arrangement where one person or institution called the Trustee holds the title to property for the benefit of other persons called Beneficiaries. This is useful for lifetime management of property where there is a substantial amount of property and professional management is desired. It may also be written to continue after death
For a Health Care Advance Directive, a lawyer can be helpful but is not required. For a Durable Power of Attorney for property or a Trust, these documents must be tailored to meet legal needs, so a lawyer familiar with “lifetime planning” will be a good resource. To find an elder law attorney in your state, visit www.nlrc.aoa.gov/nlrc/Services_Providers or www.findlegalhelp.org.
For more information, visit our http://www.parentgiving.com/elderly-care/caregiving/legal-ease/" target="_blank">"Legal Ease" Learning Center.
When having legal, health or end-of-life conversations with loved ones, you should also determine and record where critical financials items will be stored to prevent future confusion. Documents should include:
Here are some considerations when discussing end-of-life care:
Keep The Conversation Going
Every conversation you have will empower you and your loved ones to truly understand each other's wishes. After the first conversation, it is important to write down what was discussed and to continue talking with family and friends when necessary. A way to ensure wishes reflect any changes in thinking following a life change is by reviewing plans when any of the “5 Ds” occur:
Community Resources Can Help
Health, legal, financial and end-of-life issues are difficult for families to tackle alone. You can learn more about what community resources may be of assistance to older adults, caregivers and families before or after communicating with loved ones from your local Area Agency on Aging (AAA), Title VI Native American aging program or other trusted community resource.
For additional information on community supports, local or state specific information/forms or tools that can assist in the planning process, contact your local AAA. Get connected with your local AAA by calling the Eldercare Locator at 800.677.1116 or visit www.eldercare.gov.
The Eldercare Locator is the first step to finding resources for older adults in any U.S. community and a free national service funded by a grant from the U.S. Administration on Aging (AoA). The Eldercare Locator is administered by the National Association of Area Agencies on Aging (n4a). You can also learn more about AAAs and the programs and services by going to the n4a website at www.n4a.org.
About The Conversation Project. Co-founded by Pulitzer Prize-winner Ellen Goodman, The Conversation Project launched in collaboration with the Institute for Healthcare Improvement (IHI) and supported by Cambia Health Foundation. It is a public engagement campaign with a goal that is both simple and transformative: To have every person’s end-of-life wishes expressed and respected. Too many people die in a manner they would not choose, so The Conversation Project offers people the tools, guidance and resources they need to begin talking with their loved ones, around the kitchen table, about their wishes and preferences. You can learn more about beginning conversations about end-of-life care from The Conversation Project at www.theconversationproject.org, where you'll find a Conversation Starter Kit for guidance.