Grievance and change move via similar steps.

The process of grievance contains several steps, and there is a similarity between feeling aggrieved and change. The loss of predictability and loss of “control” trigger quite negative emotions in both situations.

With the work of Elisabeth Kübler-Ross we gained a more profound understanding of the process of dying. In essence, dying is the most extreme form of change and grievance. Here she could identify the following phases:

• Shock / Denial
• Anger
• Bargaining
• Depression
• Acceptance

How does this apply to change in medical conversations?

Step 1 Shock and Denial

When life hits us hard, we first try to avoid the pain.

We don’t want to see it.

Nobody should talk about it.

It feels way better to cover this up, rather than to admit that there is an issue.

This is true for adults as for children.

Grievance and change move via similar steps.

In my experience, this is even more difficult for children, as they do not separate their sense of “self” from their disease. In another post, I delve a bit more into the strange relationship between disease and guilt. This mix-up of concepts can make any conversation with a child about their disease very difficult.

Step 2 Anger

Grievance and change move via similar steps. The second phase is often dominated by anger. The sounding question here is “Why”.

Why me? Why now? Who is to blame? Could this have been avoided? What if I had done something differently?

At this time, the patient and their parents are mainly looking backwards.

In this state, there is no mental opening for addressing the disease. The child and the parent are struggling to get to terms with the reality, as it is, and that it is different than they would have wanted it to be.

As a medical specialist, we often want to move on from this phase as quickly as possible, but we have to admit, that we are not controlling the timing here. The child and the parent are setting the pace rather than us.

Only when they are starting to explore this new unwanted reality, the conversation can move forward to any possible solution.

Step 3 Bargaining

The process of grievance contains several steps and during the bargaining, the child and their parents may start to explore ways out of the current situation.
Grievance and change move via similar steps. Unfortunately, now, the emphasis is still mainly directed towards unrealistic expectations. The conversation might go around in circles, as the severity of the situation might not have yet sunken in completely.

Here, the parent and child are often looking for any quick fix or short-cuts regarding the treatment.

Alternatively, they put pressure on the medical specialist, to “solve” the situation for them, without the willingness to take steps / responsibilities themselves. They might hope to become the recipient of treatment, rather than the partner of the treatment process.

Step 4 Depression (crisis)

Grievance and change move via similar steps.

The process of grievance contains several steps and when the unrealistic expectations are exposed, and the quick-fix solutions are denied, the patient might respond with a sense of helplessness. They encounter their personal limitations, their lack of control over the situation.

This can lead to a depressed mood, and in extremis to the inability to see any way forward.

Here, our role as medical specialists would need to be similar to a supportive coach or guide.

As we have an idea about, how the body works and how we can positively influence the situation, we would be in a position to present realistic options to the patient and their parents in contrast to their previously unrealistic options.

Step 5 Acceptance (reintegration)

The process of grievance contains several steps and the final step would be the acceptance.

Grievance and change move via similar steps.

Here the patient and their parents accept the situation as it is, and they become open for real support and guidance. Now the medical specialist is in a position to offer just that. We can point into the right direction, but the final decision about the finalized treatment plan has to be the patient’s choice, and the role of the parents would be the task of supporters. 

Only when this is achieved, any plan would not be imposed on the patient, but would become genuinely their plan. And only when we achieve this, the patient becomes the owner of any treatment plan with a higher chance of compliance eventually.

In a nutshell:

Grievance and change move via similar steps.
Any change goes via certain steps, and anger and bargaining are some of them.

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The idea of guilt in relation to disease

The role of “change” in medical communication