When, Why, and How to Talk About End-of-Life Care

Takeaways

• Having an open, honest discussion with your loved ones about what you would prefer for your end-of-life care can be helpful in preparing for the unexpected.

Talking about death, especially one’s own death, remains a topic that most people avoid thinking about or openly discussing. However, avoiding conversations about death and end-of-life care can lead to discomfort, confusion, and unfulfilled wishes in the long run.

According to AARP, 85 percent of adults over the age of 45 say they’re comfortable discussing end-of-life issues but seven in 10 of them admit that the topic is generally avoided. By avoiding planning for end-of-life care and failing to discuss preferences with our loved ones, we do them a disservice. Without knowing our wishes, they will have to guess what our preferences are, and conflicting views may create unnecessary tension.

Whether you are in perfect health or facing a serious medical issue, discussing your wishes for end-of-life care and creating an estate plan to formalize those wishes can give you and your loved ones invaluable peace of mind now and for the years to come.

Why End-of-Life Conversations Are Important

Conversations about end-of-life care can provide you and your family with an opportunity to address wishes, values, and preferences related to medical care, financial matters, spiritual support, and legacy planning. They help reduce uncertainty and stress during emergencies and empower family members to make informed decisions.

For instance, discussing and formalizing your preferences for medical treatments can ensure that you receive the care you would want and remove the burden of those difficult choices from your loved ones. Doing this will reduce the chance of disagreements and conflict among your loved ones over the type of care and end-of-life treatments you receive.

When to Have the Conversation

It’s never too early to begin discussing end-of-life care. Ideally, these conversations should occur long before a crisis arises. Here are some key milestones when these discussions should take place:

• Early Adulthood: Once an individual reaches adulthood, they should consider creating basic legal documents such as a health care directive, which can include a living will and a health care power of attorney.
• Major Life Events: Marriage, parenthood, retirement, or a significant medical diagnosis can be appropriate times to reassess and document end-of-life preferences.
• Chronic Illness Diagnosis: A long-term health condition often prompts deeper discussions about future care.
• Aging Parents or Loved Ones: When supporting aging relatives, you want to make space to discuss their care preferences and estate plans. This can serve as a segue to talking about your own preferences as well.

Preparing for the Conversation

There are different ways to make end-of-life decisions and to discuss those decisions with loved ones. Before broaching the subject with loved ones, you may find it helpful to consider your preferences and jot them down. Here are some things to consider when starting your list of topics to discuss.

Health Care Decisions

Take some time to think about which medical treatments you would and wouldn’t want if the occasion for them should arise.

• Would you want to be kept alive artificially for as long as possible?
• Would you rather forgo treatments for a terminal illness or injury if they are proving ineffective?
• Where would you prefer to spend the last weeks or days of your life? In a hospital? In your home?

These are questions your loved ones should know the answers to in case you ever become unable to communicate with them. By completing a living will, you can put these wishes in writing and make them official.

Your Health Care Agent

Choosing a health care agent (as well as backups) is an important part of the end-of-life planning process. Choose people who know you and are familiar with your values and health care wishes. Make sure they would be willing to carry out your wishes regardless of what other family members may say.

Memorial Wishes

Write down any wishes you have for arrangements after you die. Decide what you want to happen to your body after you are deceased. If you want your body cremated, specify what you want to happen to the ashes.

Decide what type of funeral service or celebration of life you would want. Some people give specific instructions for their service – from what colors their loved ones might wear to what music to play.

Overcoming Barriers to the Conversation

Many people hesitate to discuss end-of-life care due to fear, discomfort, or cultural taboos. To overcome these barriers, you can:

• Acknowledge the Difficulty: Recognize that these conversations are challenging but emphasize their importance.
• Focus on Benefits: Highlight the peace of mind and clarity these discussions provide.
• Share Personal Stories: Relate experiences where planning helped or where the lack of planning caused difficulties.
• Seek Professional Help: Enlist the guidance of a counselor, mediator, or estate planning attorney if needed.

How to Start the Conversation

Approaching end-of-life care discussions requires sensitivity, preparation, and an understanding of your preferences, as well as the emotional readiness of your loved ones. Here are some ideas to help you navigate these conversations effectively:

• Choose the Right Time and Setting: Select a quiet, private space and a time when everyone involved can participate without distractions. Avoid rushed or stressful environments. Perhaps someone you and your family know has recently gone through a situation that raises these questions, and you can use that as a jumping-off point for the conversation.
• Express Intentions Clearly: Start the conversation with an honest explanation of your goals. For example, “I want to make sure we understand each other’s wishes and views and are prepared for the future.”
• Ask Open-Ended Questions: Encourage dialogue by asking thoughtful questions, such as how your loved ones feel about life-sustaining treatments and palliative care. Ask them to describe what matters most to them and what their ideal day would be like. Some people would like to spend as much as time as possible with their family; others might want nothing more than to be able to enjoy a bowl of ice cream with a book or while watching television. There are no wrong answers.
• Be an Active Listener: Allow your loved ones to share their thoughts and feelings without interruption or fear of judgment. Validate their emotions and acknowledge their perspectives.
• Use Resources for Guidance: Leverage conversation guides and other tools from organizations such as The Conversation Project or National Hospice and Palliative Care Organization.
• Follow Up: End-of-life care discussions are ongoing. Revisit the conversation periodically to update plans as circumstances or preferences change.

Topics to Address

There are a few topics that should be central to discussions about end-of-life care. Being clear about your health care preferences, such as treatment options, palliative care, hospice, resuscitation, and pain management, will alleviate confusion down the road.

You may also wish to discuss preferences for spiritual rituals or support if this is important to you or your loved one. For instance, would you want a member of the clergy involved at the end of your life in some way? Would you want to consider working with a death doula?

Expressing your wishes for where you would ideally like to live during the last part of your life will help your loved ones make the necessary decisions if you are ever unable to make them. Discussing the cost of end-of-life care and after-death expenses will help both processes go more smoothly, too. Sharing your personal values with your loved ones can be a guide if they need to make decisions on your behalf.

Next Steps in End-of-Life Care Planning

It is never too early in your adult life to start your end-of-life planning or to talk about it with your loved ones. Make life easier for your loved ones by starting the process sooner rather than later. An experienced estate planning attorney can guide you through the process and create an estate plan that works for your unique needs and wishes.

For additional reading about end-of-life planning, check out the following articles:

• End-of-Life Decision Making
• Talking to Your Spouse or Partner About Estate Planning
• 8 Tips for Having 'The Talk' with Elderly Parents
• Ensure Your End-of-Life Wishes Are Honored