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.
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.
It’s really important that the caretaking and all these responsibilities be shared, and if you have feelings, you learn to ask for help and are able to express them in a constructive way.
4. Resolution — Resolution is when you know the end is coming. The treatments aren’t working anymore. And when people start really saying their goodbyes, and that’s an important time for the family to reminisce together, to share, and for the patient — as long as the patient is able — to talk about what they want: Where do they want to die? Who do they want with them? A lot of patients prepare their own celebration of life or funeral service. And it’s a time when everyone has a chance to at least try to resolve issues. And it’s also nice to be able to talk about what they’re going to do afterward — patients find that can be a gift for them. As the patient, you have the time to give them permission to live without you. To encourage them.
And after the death comes…
5.Renewal — Of course there are a lot of rituals available to help people get through. And that’s when the family has to reorganize and decide, for example, who’s going to have the holidays, and they have to work to stay connected. The most difficult thing for families is having to make decisions without knowing what the patient would have wanted.
What are the worst mistakes you’ve seen families make?
I think sometimes people say things, especially toward the end, and they may not realize the patient is still able to hear or understand. Or they argue.
I’ve had several situations where patients have wanted to stop treatment and somebody is not ready to let go, and there is conflict. It’s important to remember everyone has needs, but the patient’s wishes are primary whether you like it or not.
Another mistake I’ve seen in my practices is that a lot of people get very ugly about
valuables and money, even before the funeral week is over. So it’s important that the patient be clear in writing. Don’t promise your daughter your diamonds if you haven’t written it down. And don’t play off your kids against each other.
And what have you seen families do right?
I have seen families where everybody is together, they have had all the conversations you could, and there’s just love. And people feel they’ve said goodbye. Saying goodbye is a privilege; having the time to say goodbye in a way that means something to you.
There were family members who put their differences aside and everybody came together to make things easy for each other and the patient, and they all pitched in afterward to help whoever was left. They had to change roles and reorganize a system. Every system has tacit rules and roles, and a healthy system is cohesive and adaptive.
And you have to be able to let go of past resentments and to understand them in context. In most cases, parents have done the best they could under the circumstances. Nobody is perfect.
People need to understand that death and dying is part of living. Just as pregnant women today can choose what kind of childbirth they want to have — at home, with a doctor, in a hospital, with a midwife — you can choose the kind of death you’re going to have, and you can let your family know. It’s a responsibility every one of us has. And I’m not just talking about old people.
Readers, does this ring true with your own experience? Would you tweak the stages?