One Simple Strategy to Eliminate Perceptions of “Sudden Death”

I remember a time when I spoke with a friend whose mother had died “suddenly”.  She said that the death was caused by medications.  She shared her grief at her mom’s death, but she talked of another grief, and described it as total distress that the mom’s death was caused by medication and that she felt the death could have been prevented.

I felt her grief over her mother’s death. I also heard this incredible distress and anger about the death of this dear mother being caused, not by dementia, or the natural dying process… but rather, the distress that this death was an accident caused by medications.

Because I am a hospice nurse, I felt a need to understand and better support her.  I asked questions to get clarity. A few basic questions, including the classic question,

“Tell me about your mom.
How was she over the past six months? Four months? Two months? Last month? Three weeks? Two weeks? A week ago? The previous 5 days? Two days ago? Yesterday? ”

I love this question.  I love hearing the family tell me the story of the last months and weeks.  It is often in the telling of this story that the family comes to “see” in a new way, what is happening for their loved one.

She told me about her mom’s decline. If I am correct in remembering this, a picture developed in my mind of a steady decline over the last months, weeks and days of her life. I saw nurses and a doctor who wanted to help her mom become more comfortable.  I saw a team who worked to provide medication to help settle the restlessness and anxiety that the mom was experiencing.  But, I also saw a health care team that did not communicate effectively with the daughter, and the granddaughters that their mother/ grandmother was dying. Consequently, when death occurred, they felt it was a sudden and unexpected death.

After pondering this for a few weeks I wrote my friend. I started with, 

“I am such a hospice nurse.  Everything I see, I see through this lens.” 

I went on to explain that what I saw from her story was that her mom was declining, that medications were given for symptom management, but that they did not cause the death.  I explained that the mother had been on the medication for months, that it was very unlikely for her to have a reaction that would have caused a sudden death.  I told her that the sad part of the story for me to hear was that she had not understood that her mom was dying.

I received a letter from my friend a few days later. She wrote,

“After speaking with you and now reading your thoughts below, I realize that I and my family were tragically ill prepared! As much or as little that the staff knew that mom was dying imminently, no one said anything to me about Mom dying. We were just beginning to realize on an intuitive level that she was on her way out, and then she died.  It felt so sudden.”

One of our many roles as providers of palliative care is to communicate clearly with the person and their family when a person’s status changes (or is changing) and to share what the changes may mean for the person. This is a core principle of integrating a palliative approach. When family has accurate information, they can prepare themselves and support their loved one.

As a nurse, when changes are noted, it may be your role to share with the family that their loved one is declining and may die in the next [Insert appropriate time frame ] month, weeks or days. If you are a PSW, you are the team member that has the most direct contact with the person, and so you will be better able to observe and note the subtle changes that indicate decline. Therefore it may be your role to share information with the team about the changes you observe in a person’s status.

It is the responsibility of everyone on the health care team to help families to see what we see, so that they can prepare for the dying of their loved one. Communicating what we see, from our perspective on the health care team, will help prevent the family from being unprepared and misunderstanding the reason for their loved one’s “sudden death.”