book notes


How We Die Now: Five New Stages, Family Included

Co-author Barbara Okun

In 1969, Dr. Elisabeth Kubler-Ross revolutionized popular thinking about how we die. Her bestselling book, “On Death and Dying,” proposed a five-step set of stages that a dying person tends to go through: Denial, anger, bargaining, depression and acceptance.

Now, a new book, “Saying Goodbye,” argues that it’s time for a new paradigm. With medical advances, dying now tends to be a much longer process than it was when the old five stages came out. And that presents new challenges for everyone involved.

CommonHealth spoke with co-author Barbara Okun, a professor of counseling psychology at Northeastern and a clinical instructor at Harvard Medical School.

So it’s time for a new five stages of dying to replace the now-classic Kubler-Ross stages?

First of all, she deserves a lot of credit for bringing the topic of death and dying out of the closet. And in those days, people diagnosed with cancer had weeks or at most a couple of months to live. So she was talking mostly about patients’ reactions. But it’s changed.

‘Death is more a process than an event, and illness and death are a family process.’

Of course there’s still sudden death, but we’re addressing death after the diagnosis of a fatal illness, when people can live years because of medical advances. Death is more a process than an event, and illness and death are a family process.

So given that, let’s look at your proposed five stages…

1. Crisis — Crisis is when you think there’s something wrong, and it can last a long time because you have to get several different opinions, and you go for tests and then you wait for the results. It can be a very anxiety-producing period because you don’t know whether you’re imagining things or there’s really something wrong. If it’s an adult, the person has to decide who they want to share the process with. If it’s a spouse or family member, everybody’s feeling that anxiety, and trying to find out what this might mean.

2. Unity — Unity is when you know. Some patients find it a relief: Even if it’s not a good diagnosis, at least they know what it is. And unity is when everybody pitches together to figure out what’s the best course of action in terms of establishing a medical team, a legal team, getting your affairs in order just in case, finding out what social services or options and entitlements are available. Family members typically put their differences aside and everybody comes together to be supportive. And it’s a time for people to organize and decide who’s going to be the point person for the doctors, who’s going to deal with the insurance company, who’s going to research different treatment options, who’ll help with estate planning and who’ll do the actual caretaking.

And then it starts getting long….that brings us to….

3. Upheaval — It’s like when people start thinking, ‘This has gone on so long, I can’t keep taking time off from work or asking my friends to take my kids to all their activities.’ Nerves start fraying and old resentments and conflicts re-emerge, and then people feel guilty because they feel ambivalent. In a way, they want it to be over with, and they feel guilty and ashamed but those are normal feelings. Continue reading