Forty years ago, when Elisabeth Kübler-Ross published her landmark book On Death and Dying, losing a family member was typically a swifter and more sudden event. Often people literally dropped dead with heart attacks. Today's families usually confront a different reality. Dr. Barbara Okun and I wrote Saying Goodbye: How Families Can Find Renewal Through Loss, in order to help all those who find themselves confronted with this new reality.

What we've chosen to call "the new grief" is a consequence of the way contemporary medicine can keep people with serious illnesses alive for extended periods. As compared to traditional mourning, which begins with the passing of a loved one, this extended grief involves the dying person himself and typically draws in the entire family of the dying person for months or, increasingly, years. It begins with a terminal diagnosis, creating a crisis for the patient and the family, and goes on from there.

The recent passing of Elizabeth Edwards, after a years-long battle with cancer, is an all-too-typical story today. It's an agonizing process that involves treatments that can have pernicious side effects, and as in her case can be marked by periods of remission. It's a process that has the potential to alter lifestyles and force families to confront issues that once were dealt with only after the death of the loved one. It can easily evoke issues from the past that were never fully addressed or resolved.

In approaching the challenge of helping people cope with this new grief, Dr. Okun and I decided the best place to begin would be to interview as many people as were willing to be interviewed about their experiences. We wanted to know what it was like, and most importantly what might have helped and made a difference. Our interviewees were recruited mainly from major cancer treatment centers, but also from our practices and through word of mouth. We were impressed with how many people were willing to share their stories and offer their advice.

What emerged from this work is a kind of emotional road map. It describes the process that most families can expect to experience, starting with the crisis created by a terminal illness. We identify five stages of family grief, beginning with crisis and ending, potentially, in renewal. We do not believe grief is ever fully resolved or put to rest. Rather, it waxes and wanes. This is true for the new grief as much as it's true for traditional mourning. That said, we've also learned that as grueling and painful as the new grief can be, it's possible for families to emerge from it not permanently wounded, but more resilient and capable of facing the future.

It's important to note the road map we present is not a neat or smooth process by any means. However, by having some idea of what may lie ahead—and what they can do to prepare themselves for it—families and patients alike can feel less helpless, less confused, and less desperate. Our intention is to help steer families through their early reactions, the medical and social and financial issues, the ways care giving reawakens old family dynamics, and the need for honest communication. We identify and help people work their way through the broad array of reactions, including anxiety, ambivalence and resentment that qualify as a normal part of the new grief.

Once the initial crisis (and the acute emotions it arouses) has passed, most families move into a stage we call "unity" in which the patient and loved ones together marshal resources and confront the terminal or potentially terminal illness. Depending on the prognosis, this period may last anywhere from weeks to years. At some point, even while the primary focus may be on treatment, some consideration needs to be given to legal issues as well as end of life planning. Putting such things off, we've learned from our interviews, often leads only to another crisis later. What follows are several specific suggestions we offer to patients and their loved ones as they move from crisis into unity of action:

• Include an attorney on the "team" who will work with the terminally person and the family, and do so sooner than later.
• Designate one or two family members to be "point persons" who accompany the patient to medical appointments where diagnosis and treatment will be discussed, take notes, and become knowledgeable about treatment options and prognoses. The patient will have to grant these individuals the right to have access to medical records, in writing.
• Create advanced medical directives in writing. These include a designated medical proxy, meaning someone the patient empowers to make medical decisions when he or she is unable to. This is critical if you expect a loved one to be able to step up and assert your wishes. Remember: The person you designate to make decisions for you at the end may need to persist in the face of resistance in order to honor your wishes.
• In addition to assigning a medical proxy, sign a "springing power of attorney" that designates someone to manage your financial affairs if or when you become disabled.
• Think about where you would prefer to spend the final months, weeks, and days of your life. Assume you will be able to get palliative care wherever you choose to be. Would you prefer to be at home, in a hospice, or in a hospital? Put all of your preferences in writing, sign it, and have it witnessed.
• Decide under what circumstances you would want to be treated using heroic efforts: if it means living another six months, a month, or a week? If you live in Oregon or Washington and have access to these states' Death with Dignity laws do you think you might want to be the one who decides when it is time to pass on?
• Decide who you want to be with you in your final days and what you would want them to do (and not do) for you. Again, put it in writing. You can always make changes if you want to.

Thanks to the emergence of the Internet it's now possible to have an international conversation about the new grief and to break out of the isolation many people in this situation report. If you need assistance or more guidance regarding any of the above, our book, our web site, as well as DeathwithDignity.org include many resources that you can refer to.

Joseph Nowinski, Ph.D., is a clinical psychologist. His latest book, Saying Goodbye: How Families Can Find Renewal Through Loss, is co-authored with Dr. Barbara Okun. Learn more at NewGrief.com.