Not a Problem to be Solved or a Task to Complete

Think about one of the biggest losses you have suffered.

Then realize that the diagnosis of a serious illness brings about loss magnified and multiplied, a stark realization that there is no going back. It might be said that all palliative care clinicians specialize in grief and loss even though patients are not necessarily at the end of life. As goals to move palliative care upstream closer to the time of diagnosis, and into the community beyond original hospital consultant models increase in momentum, palliative care teams will care for patients who are experiencing losses well before the end of life.

Covid-19 has brought on a surge of loss. Those who have had a serious bout from Covid-19 illness will never get back the self they had before the illness hit. The way they consider themselves and their life is irretrievably altered. Those who are suffering from long haul Covid-19 or from lingering symptoms, will not experience a resolution of loss quickly. Loss will be like a shadow that blocks out the light for quite some time.

If you are the individual with the serious illness, there are so many possible losses. Loss of your idea of the future. Loss of trust in the integrity of your body. Loss of time, money and predictability. The predictability may have been an illusion, but the illusion is shattered with the diagnosis of a serious illness. In so many ways, biology can seem like it has the upper hand, like the physical self is ruling over all other parts of the self. It hardly seems fair that one may go bankrupt paying for an experience that was never desired, despite health insurance.

What do people need from others when they are grieving? Perhaps the most important idea is that grief is individual and is expressed in different ways. Grief does not have a schedule. We know there are not tidy stages, but rather a roil of feelings that emerge at different times, with varying intensities.  Grief can come in like a rogue wave, flowing way over the usual pattern.

Every time we come up with some generalization or platitude about grief, it will be dashed. For example, we might think that one of the things grieving people need is comfort from the presence of others. But some people need to be alone to attend to their own wounds. We may think faith will help, but an atheist may not think so. It is easy to become entangled in our own values and views related to loss.

If we cannot follow platitudes, what can we do? We can witness, let others know we see them, and we see the pain they are experiencing. We can ask about grief from other losses. Apart from some children and youth, everyone has had a loss. We can ask how the individual got through a previous loss, what helped and what hindered. This way of asking helps people recall they did survive a previous loss, and it may help them bring forward useful skills.

Grief, perhaps more than some other things, can teach us to be with, rather than do to. This is no small shift for those unaccustomed to delivering palliative care services and will be an important factor in culture change in an organization seeking to build palliative care skills across the team. People grieving are not a problem to be solved or a task to complete and check off. Being present is not the same thing as offering “comfort.” This skill, of being comfortable with presence as healing, is a strength that most experienced palliative care clinicians hold. Well-intentioned but less experienced clinicians can struggle with the sense that they are not “doing enough.” They may squirm, feeling much more comfortable in the realm of interventions and actions. Interdisciplinary team dialogue and case consults can help.

There is an exemption, complicated grief. Very recently the Washington Post announced that Prolonged Grief Disorder has been added to the DSM-5, the source used for all behavioral health diagnoses. One in ten mourners struggle after the one -year mark, with an intensity of prolonged grief that interferes with daily life.  Prolonged Grief Disorder has multiple criteria and the first is that the loss is over the one year-mark. In the next blog, we will explore what palliative care teams can do to set a stage for functional grief, not only grief after death, but for all the losses along the way.

Pat Justis