Friday, August 15, 2014
We Don’t Know Death: 7 Assumptions We Make about Dying
(Welcome a new contributor to the Pallimed Blog! Lizzy Miles, MA, MSW, LSW is a hospice social worker in Ohio who has also contributed to the Pallimed: Arts and Humanities site with a post on bucket lists in a Smurfs game. Yes, you read that right. She is best known as the the person who brought the Death Cafe concept to the US. We are very excited to be working with Lizzy! - Ed.)
The worst thing anyone ever said to me was, “You think you know
everything, but let me tell you: you don’t know jack!” I was six weeks
into my social work internship at a hospice and it was my student supervisor
who decided I needed an attitude adjustment. Needless to say, I didn’t stay
there. I was angry and hurt for a long time but now I’ve come to realize that
while his delivery was awful, the message was relevant.
It is now five years since my student supervisor told me that I
didn’t know everything. I have to admit he was right. The most important thing
I’ve learned from my work in hospice is “knowing” can be dangerous for hospice
staff. We take a situation that seems similar to one we have seen before and we
can fall into the trap of assuming the outcome will be the same. Our patients
and families take what they think they know from media or prior experience and
apply expectations. The following lessons have been taught to me by many people
I have worked with. The cases below
highlight these assumptions and are composited from many experiences.
Assumption #1: If you have
experienced a death, you know how death happens.
I can recall a situation with a person who had no local family and so the private pay aides that
took care of her were her “family.” She
had a terrible UTI and had chosen to not take antibiotics. Her doctor visited
her at home and informed her it would be about three days before she died. When
I went to visit, all of her aides were present. I had asked if they had been
bedside before and they all said they had. They said they knew death and yet there
was nervous energy in the room. After talking with them more I discovered why
there was an unsettled feeling. The client was still alert and awake and this had
contradicted the aides’ prior experiences and expectations of how people die.
Assumption #2: You’re
supposed to be unconscious when you’re about to die.
At least that is how the aides' previous
experiences had been. They were not used to a client who was fully awake,
making jokes and quite feisty. I had this assumption too for a long time until experience
showed this was not always true.
Assumption #3: Family will want to be with their loved one
when they are dying.
I’m sure we have all heard a fellow clinician telling an out of
town relative, “You will want to get up here quickly, your mom is transitioning.” I once heard that and cringed because I had already had a conversation with
the son where he said his last visit with his mom was good and that he didn’t
think he would come up to see her in the facility until it came time to plan
the funeral. I now make it a point to ask the question at admission and share
the results with the hospice team. When given the permission to acknowledge
their true feelings, family members are grateful to be able to admit it if they
do not want to be present at a death. Clearly
it is still important to notify these family members when their loved one is
actively dying, but in a way that does not pressure them into making a visit.
Assumption #4: People don’t want
to be alone when they die.
Some families sit vigil all night and all day and then patient
dies when they briefly leave the room. After I ask a family member whether they
want to be there during the dying process, I inform them there is a chance that
they may not present at time of death. As a bereavement counselor, you see so
many cases where people feel guilty for “not being there.” It can be helpful to set the expectation early
that dying is a private experience and the person may die when family and
friends are not there. We discuss how their loved one may not be able to “let
go” while they are there. This information can help caregivers to take the
pressure off themselves.
Assumption #5: Family matters
will get resolved.
We have to let go of the romanticized notion of resolving 30-year
old disputes at the deathbed. This applies to patient relationships with family
but also to relationships between other family members. Unresolved conflict can
be difficult for some hospice staff to accept. We should not go overboard in
trying to set up a reunion because of our own ideals. We have to remember it is
not our family and we don’t have the complete picture.
Assumption #6: The secrets to the universe will be
revealed.
I think the movie industry has contributed to the idea of deep
revelation at the end of life. Some people just don’t go there. We need to set
expectations with families that not everyone has a big reveal, a big insight or
a big goodbye. I admit I’ve been guilty of this. A 99 year old client set me
straight.
Assumption #7: You should
tell your loved one, “It’s okay to let go.”
There is the common thought that sometimes patients need
permission to go, but that is not always what is holding them back. I’ve had hospice patients who tell me
they are not afraid to die, but when they are actively dying they suddenly become
fearful. This fear can lead to patients “hanging
on.” Fear of the unknown can be a
powerful motivator to stay alive. If it is
fear that is keeping a patient alive, telling them “it’s okay to let go” may
just put unnecessary pressure on them to go before they are ready. While hospice patients have known that their
death is predicted, the actual reality of dying can be overwhelming to face. It takes time to process... and sometimes
permission to stay until they’re ready to go is really what’s needed.
The more I know about dying, the more I know that I don’t know. But how well does one really want to get to
know death anyways?
Photo Credit: Emily Riegel
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
Note: This article was later expanded into a series of seven additional articles. The next article in the series is a detailed look at the first assumption: How Assumptions about Dying Can Negatively Affect Patient Care.
