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 

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 article is the third in a series of articles where I will take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions.  In my last article, I wrote about the assumption you’re supposed to be unconscious when you’re about to die.

Here is our next assumption: Family will want to be with their loved one when they are dying.

This assumption is widely held and we sometimes mistakenly put family members on the spot when we call them to inform that their loved one is transitioning, or “actively dying.” Of course, we do want to inform family when the time is near but we do not want to tell them in a way that implies our expectation that they be present.

Additionally, just because a patient is a home patient, this does not mean that the family wants to be there. This whole article was inspired by an incident with a hospice patient and her children. The patient was being cared for at home and was admitted to hospice in her final days. On the day that she was actively dying, the hospice nurse went to the house to check on her. Because her symptoms were under control, and family members were present, the nurse was going to leave. The family, however, had other ideas. They wanted the nurse to stay there so they did not have to be there. Of course, the hospice nurse did stay with the patient and it all turned out okay, but hindsight is 20/20. It would have been nice to know ahead of time that the family had an aversion to being present in the house when their mother passed. From that point forward, I decided to learn family wishes upon admission.

Suggested intervention: Ask on admission, “Is it your hope or expectation to present at the actual time of death (TOD)?”

It is important to ask this question in a way that does not imply judgement of a “no” response. The reasons that people do not want to be present vary widely. Their reason may be because they feel disconnected from the patient. There may be a fear that it will be an unpleasant experience. Those of us in hospice know that the actual moment of death is most often quite peaceful and very meaningful. While we may be comfortable with death, it probably would be more harmful to try to convince a loved one of the beauty of the experience. In any attempt to convince them, we may be leading them to believe that we are not accepting of their choice and/or that we are judging them.

Suggested intervention: Normalize patient “no” response to question about being present at TOD.

There is no correlation to how much a patient is loved and whether family wants to be present at their death. There are often conflicting thoughts for family members who do not want to be present because they also do not want the patient to die alone. These family members often feel guilty for not wanting to be at the bedside.

Suggested intervention: Implement vigil volunteers to sit with patients whose family members do not want to be present but have concerns about patient dying alone.

Be aware, though, that it is possible that a caregiver will change their mind about wanting to be present. They may initially say they do not want to be present, but then choose to sit bedside after all.

Suggested intervention: When a caregiver confirms they do not want to be present at TOD, let them know you will still inform them when the time is near.

Again, this should be done in a way that does not imply any judgement about their choices. Also please note, if caregivers say they do want to be present at time of death, there are other assumptions we will want to avoid that I will be addressing in future articles of this series.

As with the other assumptions articles, this was written with the hope that we acknowledge and explore the wide variety of viewpoints patients and families can have towards death.