As we gather with family, friends, patients and their families this holiday season, it may be a wonderful time to have The Conversation, the one that allows us and the people we care about to talk about the last stage of life, while being firmly grounded in today.

It's not easy to talk about how you want the end of your life to be, even more difficult, to ask others. But it's one of the most important conversations you can have with your loved ones.1

Talking to your loved ones about what you or they want for end-of-life care is a conversation, one that should happen with you at present. Each person is their own best expert on what he/she wants and needs. Medical and legal people may become a part of the discussion later, but it should begin with you.

Cofounder of The Conversation Project,1 Ellen Goodman, began this work to provide a framework for this difficult discussion. The project is dedicated to helping people talk about their wishes for end-of-life care. Goodman realized that too many people die in ways they wouldn't choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain. These emotions impact grief and often affect survivors in ways we have not yet begun to understand. Goodman's goal is to help us begin to change how we think about this topic and to transform our culture so we shift from not talking about dying to talking about it.

Using this framework, the conversation becomes about how we want to live at the end of our lives. It will be a time to communicate about the kind of care and options we want and don't want for ourselves. This is a step commonly lost between the "getting your affairs in order" and "funeral arrangements."

Many people draw up a will with legal guidance, attempting to provide for property and distribution of goods. Often, people plan the details of their postdeath arrangements with great precision. Family and friends are instructed about burial sites, clothing choices, and even music for the services. These plans seem to help everyone feel that their loved one's wishes are intact. However, conversations about what you would like while still alive may be just beginning.

To help you get started, the IHI Open School and The Conversation Project created a free, 4-lesson online course.2 A starter kit provides a useful guide.1

This online tool provides tools such as a writing exercise that begins with a "What Matters" statement. Participants may talk about or write a statement that begins with "What matters to me[horizontal ellipsis]," later extending it to "What matters to me at the end of my life[horizontal ellipsis]."

Short survey-type questions are offered to encourage people to choose care settings and quality-of-life issues.

The kit includes legal and medical documents to write down your wishes so they can be honored when the time comes. In addition, the kit defines terms that are commonly used in the conversation such as:

advance care planning: the process of thinking about your preferences for care at the end of life-exactly what you have been working on here.

advance directive: the document that describes your preferences for care in case you are unable to make health care decisions on your own; it is also known as a living will.

health care proxy: identifies your health care agent (often called a "proxy"), the person you trust to act on your behalf if you are unable to make health care decisions or communicate your wishes; in some states, this is called the durable power of attorney for health care; this is probably the most important document.3

Other documents and services offer similar tools. Five Wishes is a booklet introduced in 1997 and originally distributed with support from a grant by The Robert Wood Johnson Foundation. This tool lets your family and doctors know

* whom you want to make health care decisions for you when you can't make them,

* the kind of medical treatment you want or don't want,

* how comfortable you want to be,

* how you want people to treat you, and

* what you want your loved ones to know.

Since 2011, the materials are available online, allowing people to complete Five Wishes on screen and print out a personalized document immediately.4

This year, as we gather family and friends for the holidays, invite a conversation about the future, a different future, one that you may not be able to control or predict, but one you want to discuss.

Everyone will die. It is a certainty. Unfortunately, we, and many of our patients cannot choose when, where, or how we will die, but we may change some of the conditions and experiences that will surround that period.

When I was young, my Aunt Isabelle once told me about the best way to go, the 3-day death: one day to let everyone know your going, another to let friends come to say goodbye, and the last one to be with your family. Sounded great to me. My earliest memories were of some of these deaths.

I have remote memories of a steady stream of caring people, carrying hot meals and home-baked pies as they came to my grandparent's house. There were no hospital beds, oxygen tubes, or suction machines. It was actually nice, not frightening to me as a child and somewhat comforting.

Next there would be rituals, an Irish double header; a wake consisting of afternoon and evening viewings at the funeral home, followed by a high mass the next morning. The details had all been discussed over the last days, as family and friends prepared for the inevitable.

As an intensive care unit nurse, I soon realized that a simple death was a gift; not everyone would have an opportunity to be together with family, talking and sharing stories, often mending fences and sharing prayers. In the intensive care unit, people are often robbed of the things they want to say and do. They may not be able to be with the people they love most. We know that people want to say things, usually centered on love, forgiveness, or gratitude.

Sounds simple, but often we lose the chance to say or hear what the people we love most want or need, because we have not had this conversation.

People have concerns beyond simply prolonging their lives. Professional and lay publications and presentations commonly tell us that patients with terminal illness find that their top priorities include, to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others.

Dr Atul Gawande tells us, "Spending one's final days in an ICU because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium, and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or "it's OK" or "I'm sorry" or "I love you."5

Often at the end of life for our loved ones, we are unsure of what to do, where to be. My friend Joe was close to his last days, battling renal cancer. His nephew asked when he should come to see him. Joe's answer was great! "If he wants to see me, he can come anytime[horizontal ellipsis] if he wants me to see him[horizontal ellipsis] he better come now!" Joe was able to talk to his family, be cared for in a setting of his choice, and determine when medical intervention should transition to palliative care.

Enjoy the holidays. Begin the conversation.

Kathleen Ahern Gould, PhD, RN

Editor in Chief Dimensions of Critical Care Nursing

Adjunct Faculty

William F. Connell School of Nursing

Boston College

Chestnut Hill, Massachusetts

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