Saying Goodbye: How Fam­i­lies Can Find Renewal Through Loss” co-​​authored by Bar­bara Okun, a North­eastern Uni­ver­sity pro­fessor of applied psy­chology, explores “con­tem­po­rary grief” — the new reality of pro­longed death, with ear­lier warning due to reg­ular exams and advanced diag­nostic tests, and potent treat­ments that target ter­minal dis­eases and extend life. Looking back at Eliz­a­beth Kubler-Ross’s land­mark 1969 book, “On Death and Dying,” which laid out a five-​​step model for grieving, Okun dis­cusses the new stages of grief.

How have the stages of grieving been altered?

The major dif­fer­ence is that, with modern med­i­cine pro­longing the lives of people with a poten­tially fatal ill­ness, death becomes a drawn-​​out process rather than an event.

The stages of this pro­longed grieving include: crisis, when the patient and family are awaiting tests to con­firm diag­noses and dealing with the shock, fear and anx­iety about lack of con­trol that accom­pa­nies this news; unity, a time of everyone pulling together to estab­lish a med­ical team and legal and social ser­vices teams, and the rules and roles of family behavior are in the process of reor­ga­ni­za­tion. Past resent­ments and alliances are put aside to focus on the tasks that need to be attended to; upheaval, a period like a roller coaster where there are remis­sions, recur­rences and treat­ment side effects, and family mem­bers feel ambiva­lence, shame and guilt for their feel­ings about bur­dens, oblig­a­tions, respon­si­bil­i­ties. Tem­pers begin to fray and pre­vious family dynamics may sur­face; res­o­lu­tion, the time when the end is near and people — often including the patient — plan for how they want things to be at the end; and renewal, after death, when people first feel relief that it is over, guilt for those feel­ings and then the grieving that, while never ending, recedes over time as people reor­ga­nize their lives and move on.

How are the dying affected now that they are included in the grieving process?

The dying may direct how they want to live what­ever time they have left, doing things they have put off, repairing rela­tion­ships, revising pri­or­i­ties, par­tic­i­pating in treat­ment choices, estate plan­ning, deciding who their health care proxy will be, preparing the family for life without them and also helping others to do what he or she typ­i­cally handled.

In the res­o­lu­tion stage, the dying often decide where and how they want to die: In hos­pice? At home? In a hos­pital? And whom do they want by their side? Many pre­pare their own funeral ser­vice, selecting ushers, music and the offi­ci­ator, writing let­ters and saying goodbye the way they want to.

Does pro­longed dying give fam­i­lies time to say goodbye and find com­fort, or does it mean pro­longed sadness?

People have the time to review their lives together, to have fun and enjoy each other, to pre­pare one another. This is a process of bal­ancing hope for the best with prepa­ra­tion for the worst, for learning to live with uncer­tainty and tie up loose ends. There is sad­ness and anger but there is also plea­sure about being able to make choices, enjoy rela­tion­ships and say and do what you wish to others. How fam­i­lies nego­tiate this process is sig­nif­i­cant — we rec­om­mend open com­mu­ni­ca­tion, having dif­fi­cult con­ver­sa­tions, sharing the care­taking, del­e­gating and assigning tasks, agreeing to dis­agree and caring empath­i­cally for each other.

As people grieve during pro­longed ill­ness, are there sep­a­rate stages for grief once a family member has passed?

Once a family member has passed, there is enor­mous sad­ness, but not the shock and denial that Kubler-​​Ross sug­gested. She was a pio­neer, but dying was much more sudden and quick in her era. People typ­i­cally go through weeks and months of being task-​​focused and there are indi­vidual dif­fer­ences in how people grieve. Grief is life-​​long. It changes with time and becomes a part of you. The lost one is always a part of you.

How might fam­i­lies find com­fort in con­tem­po­rary grief?

I think they can find com­fort in the new rela­tion­ships with each other that they have devel­oped during the process of dying, in the fact that they have shared and worked together to ensure that the lost one got to choose how to spend his or her last years and that everyone had a chance to say goodbye in their own way.