On Honesty and Transparency with the Dying

Doctors and other clinicians do not like telling the dying that they are dying and often delay until there is a crisis. This is understandable. No one wants to be a bearer of bad news, much less what is often considered to be the worst news.

To get around this problem, clinicians use a host of strategies. First, they obscure by using technical/clinical language. E.g., “Currently, your performance status is poor but we’re working to improve it.” In oncology, a common strategy is to couch the bad news in a hypothetical but knowing full well (and not communicating to the patient or family) that the antecedent will never be true: E.g., For a cachexic patient who is too weak to tolerate further treatment, an oncologist might say “If we can address the blockage in your digestive tract, then we can resume nutritional support, then perhaps resume treatment.” Another tactic is to use euphemisms for death and dying instead of direct and transparent language.

In cases where a patient becomes non-responsive, neurologists are often consulted. The cases typically involve neurologically devastated patients (anoxic brain injury, severe edema in the brain, severe brain bleeds). In almost every case in which a neurologist has been involved I have witnessed them using the same phrase. They say to the family, “I can’t say 100% that the patient will never recover but it is highly unlikely.” This is true, but the family hears “So, you’re telling me there’s a chance!” which is the wrong thing they need to hear.

Let me explain why.

And of course I will begin with the Ancient Greeks…

A Good Death

For the Ancient Greeks, a good death is one of the primary goals of life. Much of one’s later years are devoted to ensuring that one’s affairs are in order and to live well (i.e., virtuously). Death was an important and inevitable event in which one could display one’s virtues.

Consider, for example, one of the most famous historical examples: Socrates chose to die on his own terms (living in accordance with the laws of his community even when they went against him) rather than accept the escape offered by his friends.

Unlike the Ancient Greeks, we live in a death-denying culture. We act as though it is not an inevitable part of life and most people (patients and their loved ones) enter the dying process unprepared. Consider, for example, that only about 1/3 of US adults have any kind of advance directives–and fewer have living wills. This denial is in large part a product of the institutionalization of the dying. For most of human history, death was not a foreign or rare experience. When family members died, they were cared for and died at home. However, for us moderns we almost never see it. The dying are hidden away in hospitals, palliative care units, and hospices.

Care for the dying has been institutionalized and professionalized–taking it from the hands of everyone to the hands of a few clinical professionals. Most people, therefore, have never cared for a dying person much less cared for someone while they died in their home (if they have, it was a rare event). It’s no surprise, therefore, that most people are psychologically unprepared and unskilled for experiencing the death and dying of loved ones or themselves.

Within this context we can begin to see why it’s so important for clinicians to be so transparent and honest about death and dying. None of us will ever escape death but there are good deaths and bad deaths. And a good death requires good information to make good decisions and preparations. This is especially true in the context of contemporary medical technology which allow us artificially sustain biological life beyond a person’s ability to sustain consciousness: Just because we can doesn’t mean we always should…

When clinicians deprive patients and their families of honest and direct information about whether they are dying, they deprive them of the time and information required to make a good death possible. This is all the more important in a death-denying culture where people already lack the experience and psychological tools for end of life decision-making. Good decisions require time and good information. Delaying and obscuring bad news risks depriving people of a good death.

As a clinical ethicist, most of the time I am called for an end-of-life conflict between the family and the care team, it’s root cause is clear: At the point in the patient’s journey when it first became clear there were no more available interventions, the dire prognosis wasn’t transparently and honestly conveyed. Now, the patient is in the ICU, and only now is the attenuated time line conveyed by the ICU doc to the patient or family (but frequently just to the family since the patient is often minimally responsive).

“Your loved one has suffered an irreversible anoxic brain injury, we recommend changing their code status to DNR. Is that OK?”

“Your loved one will never be able to survive off the vent. The cancer has metastasized to their lungs. We recommend de-escalating care and converting to comfort care. May we do this?”

“Your loved one can no longer have meaningful interactions. Continuing blood transfusions prolongs them in this state while the cancer advances. We recommend discontinuing blood transfusions and converting to comfort care. Is this OK with you?”

The family–belonging to a death-denying culture–is psychologically unprepared to process the information. Add to this that now is the first time they are hearing–more or less transparently and directly–that their loved one will die and there’s nothing more we can do to stop it.

It’s going to take time for them to internalize the pending loss,

to get clear on the stakes,

to reflect on what their loved one would have wanted,

to reach a consensus.

But now, time is the main thing they no longer have.

Yet they must make end-of-life care decisions now!

To summarize so far: It’s important for clinicians to communicate transparently and honestly to a patient how much time they have and when they are dying. This allows the patient and their loved ones to process the information and plan appropriately for a good death.

The standard (and I believe, correct) way of communicating this information, commensurate with context, is “hours to days,” “days to weeks,” “weeks to months,” “approximately half a year,” “6 months to a year.” These locutions clearly and honestly convey time while also communicating the inherent uncertainty of death prognoses– but without the false hope the neurology approach invariably creates.

Concluding Thoughts

There is another important reason to be transparent and truthful with the dying patient. This I learned recently from our hospital chaplain who I consider to be the wisest man in our hospital. He said (paraphrasing):

The dying have important things to teach the living. But these lessons can only be communicated when the dying know that they are dying. When we deprive the dying of the knowledge that they are dying (and wait until they are intubated or non-responsive), we deprive the living of valuable knowledge.

Caveats

Not all physicians delay or obscure prognoses to the dying. I’ve been in the room when it’s been done transparently, honestly, and most importantly–compassionately. There is a movement in medicine to train doctors in having these conversations and initiating them earlier in a patient’s journey. For example, my hospital began an initiative a year ago requiring all advance care providers to take a standardized training in conducting end-of-life conversations.

I’ll also point out that sometimes it’s appropriate to have these conversations over the course of 2 visits rather than one. In one case I witnessed, the young adult in the prime of their life was completely devastated by the initial news that there were no more available treatment options. I will never forget the look on their face. Providing the dire prognosis in that moment would have been inappropriate as it would have left them completely hopeless. (Hope needn’t be directed at overcoming death but may also be directed at what one can do in one’s time remaining).