How Assumptions about Dying Can Negatively Affect Patient Care

by Lizzy Miles

"The only true wisdom is in knowing you know nothing." – Socrates 

A little over a year ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Having knowledge of our assumptions is a first step, but what do we do with that knowledge?  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This is the first in a series of articles where I will take each assumption and explore the concept in greater depth to include implications and possible interventions.

Assumption: If you have experienced a death, you know how death happens.

There is a bit of irony here, but it seems to me that the people who have only experienced a few deaths have a greater confidence that they “know” death.  It is not their fault, they don’t know what they don’t know.  As staff members, we can also sometimes become overly confident in our ability to predict how a patient’s dying process will go. I am guilty of this, but I have been proven wrong enough times to now know that nothing is certain except the eventual death itself.

Patients, caregivers and professional staff all can get caught up in assumptions. We will explore all three scenarios and the implications.

Patients

It is not uncommon for hospice patients to have expectations about their hospice journey based upon what they have witnessed before.  The patient’s prior experiences can affect everything from pain control to emotional responses.

Suggested Intervention: Ask the patient, “What has been your prior experience with someone dying?”

A personal note written by family member of the author more than 50 years ago

For some patients, they will give you prolific details about all of their prior experiences.  I had one gentleman who spent over an hour recounting in great detail the cancer diagnoses, health decline, and eventual deaths of several siblings.  Though I would have preferred to complete my assessment about his life, I realized that these experiences were what shaped his world view.  He had an extensive distrust of the medical system, and he expected to be cut off in conversation.  He was pleasantly surprised when I let him elaborate in extensive detail. Was what he told me relevant?  I determined it was, because I came understand that he saw himself as a caregiver and it was difficult for him to be the one who now needed care.  I also learned that he had witnessed some symptom management issues (albeit 30 years ago) and he had fears that his pain would not be controlled.  I informed the RN case manager of the patient’s concerns.

I had another patient who saw his mother die right after she received morphine. He assumed it was the morphine that killed her and refused medication despite great pain.

Asking the question about prior deaths will also inform you of the patient’s prior encounters with hospice.  The patient’s expectations are going to be based on what happened before. Was the prior experience positive?  If so, what did they find most helpful?  If the prior experience was not helpful, what happened?  The way the patient talks about other exposures to hospice will reveal what is important to them.  For some patients, it’s the educational component of what is happening.  For others, it may be the emotional support they received.

A patient who shares a negative perception of a prior loved one’s death related to poor symptom management gives the staff an enormous advantage to get it right for them this time.

Suffering is not inevitable.

Caregivers

Suggested Intervention: Ask the caregiver about their prior death experiences and then, “Is it your hope or expectation to be present at time of death?”

Depending on the patient’s condition, I may or may not ask the question about time of death on admission.  The appropriateness for this question depends in part on the patient’s diagnosis. There are some patients who come on to hospice with less than a week to live. It would be prudent to ask this of the caregiver so that WE don’t make assumptions that they do want to be present (that’s a whole different article). What’s relevant here is that if a caregiver has been present during time of death previously, it is going to shape their expectation.  A caregiver who had a particularly meaningful bedside experience with the family gathered around may assume that this death will be the same.  They may or may not be right. Every death is different and the current patient may not want people around.
A different caregiver had told me he was present with a loved one previously and because of that experience he knew he did not want to be present at his father’s death.

Caregivers can also make assumptions about the length of time it takes to die based upon their prior experience with a different loved one.  If the previous death was prolonged then they might assume this one will be as well.

Suggested Intervention: Acknowledge the prior experience the caregiver had and inform them of potential variations.

Hospice and Palliative Care Staff

It can be very easy for hospice and palliative care staff to make assumptions about death. Assumptions are not entirely awful, they allow us to anticipate symptoms and education the patients and families regarding the potential course of an illness.

Suggested Intervention: Examine your own assumptions about the dying process.

There is a fine line between establishing an aura of competence and brazenly asserting that which we do not know.

Where we can get into trouble is if we state what we believe with such certainty that it does not allow for exceptions.  Well-meaning hospice workers may convey to family the trajectory of actively dying to include mottling, unconsciousness, apnea.  All of these symptoms do happen, but not always.  Additionally, patients can have these symptoms, be incorrectly labeled as “actively dying” and then go on to live for weeks.  Caregivers hang on to every word we say regarding prognosis. We need to be careful we are not setting false expectations for a longer or shorter life expectancy.  Yet we also do not want to be so vague as to frustrate the caregiver with insufficient information.

Suggested Intervention:  Consider using the words, “typically” and “may” when you talk about what “might” happen.

There is also a fine line with humility and creating a sense of doubt.

Be careful about expressing “unknowingness.” I had one situation where I was called to sit with a distressed family in a facility while a patient was actively dying. The family was hypervigilant about the dying patient’s symptoms.  They asked me a question about one of the symptoms and repeated to me that the hospice nurse said, “I’ve never seen that before!” Unfortunately, the family interpreted the nurse’s statement as something was “wrong” even though the patient did not seem to be in distress.

Suggestion intervention: When asked a question that you cannot answer, say “I’m not sure” and inform the patient/caregiver that you will collaborate with the hospice team.

Every death is unique.  In order to provide the best care possible for the patient and families, we need to be assessing their assumptions as well as our own.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW