KindEthics Newsletter April 2009: Communicating with the Dying

KindEthics Newsletter
The Human Side of Healthcare Ethics
Volume 1, April 2009

Quote of the Day:

“Everyone has an expiration date stamped on their butts. We
just can’t read the date.” -Viki Kind

Feature Article:

Communicating with the Dying

There are many layers to communicating with the dying. It depends
on who the person is, how they are dealing with their own dying
process, your relationship with them and so many other things. So,
what I am about to tell you works with some and not with others.
Or one communication strategy will be appropriate but the other
parts won’t fit. I trust you will know what to do as you help the
individual in front of you.

I didn’t know all of this myself until about 5 years ago when I
became a hospice volunteer. I had aging relatives that I was
responsible for and I felt helpless when it came to dealing with
their deaths. So I went through an extensive training and have
been learning ever since. I am here to share what I have learned.
The first section addresses the months before death and the last
section addresses the last days and hours of death. Both are
profoundly important.

The Early Days of the Dying Experience

People want a safe person to talk to and perhaps you can be that
person for them. You will be giving the gift of conversation to
your friend, your loved one or someone you are working with in your
professional life. As a side note, one thing I struggle with is
when someone doesn’t want to talk. I have to remind myself that
this is this person’s journey, not mine. I am only there to
support them. I tell them that I would be glad to talk to them
about their fears, concerns or hopes for how their death might go.
But I accept when they say, “No thank you.” Maybe they will be
ready another time or maybe I am not the right person for them and
they would prefer to talk to someone else. I don’t take it
personally. I stay present and meet them where they are
emotionally.

Again, everyone is unique. These are just some of the issues
people would like to talk to someone about:

-To know the diagnosis, prognosis and to choose the type of care
-To be treated as a person and not a disease
-To be in an environment of their choosing
-To talk about their fears of abandonment, pain, physical
deterioration and increasing dependence
-To be able to have their family feel they can get along without them
-To have their moods understood and accepted without judgment, such as anger, despair, guilt, denial, resistance or sorrow
-To feel that dying is a natural process and it’s okay to let go
-To be able to communicate honestly with family members regarding their feelings and needs
-To be as pain-free and alert as possible
-To find meaning in their lives, in their suffering and in their death
-To experience their remaining days with awareness and appreciation for life
-To have the respect and love of those who care for them
-To be able to remain in as much control as they are able
-To be able to complete unfinished business
-To be given a sense of purpose in the days remaining

This last one is very important. The other day someone was telling
me about their dad’s failing health. The father was still
completely competent but the daughter had taken over her dad’s
life. Her dad had lost his voice in his own life. And everyone in
the family started to over-protect him. The grandkids would come
over and they would say, “Shush, don’t bother your grandfather.”
This was a grandfather that loved his grandkids and loved
interacting with them. He could still be the grandfather. He
could still matter in their lives. He wasn’t dead yet. Instead I
told her to do her best to keep him included and to let him know
that he matters.

When people are dying, one of the most profound
questions they want answered is, “Did I matter.” Make sure you
tell them not only that they matter but why they have mattered.
Tell them what you have learned from them and how they have changed
your life. Now I realize that sometimes things do need to change
as the person becomes weaker but try to keep the person connected
and valued in the family. I know when my aunt was dying; people
would still come to her room and ask her for advice. She still
mattered. I think this is one of the reasons she held on for so
long. Her work wasn’t done. So, please help the person have their
dignity and value until the end.

The Last Days of the Dying Experience

When people are getting very close to death, maybe during the last
few days or hours, their body begins to change. Because they are
probably no longer eating or drinking, their electrolytes get out
of balance which affects the brain. (The electrolytes work as a
balancing system keeping all of the chemicals in our body in
working balance. Without the proper balance, our brain function is
affected.) Strange things may begin to happen but you don’t need
to be afraid. These signs are normal and natural and I find rather
intriguing. For instance, the person may begin to speak of being
in the presence of those who have already died. This frightens
many families and some people argue with the dying and tell them
that they are wrong or just confused. Why do we need to argue with
them? They are dying! Instead, ask them questions. Who do you
see? What do you see? Tell me about it.

I expected my father to see his mama and papa who he missed dearly and adored.
But he started talking to the empty space right next to meet and kept
saying, “Martin.” I asked him, “Mama?” But he said no, “Martin.”
Then it hit me. His best friend in his childhood and early
adulthood was Martin. His dearest friend had come to guide him on
his journey. Now some people say it is just the electrolytes
affecting the brain and triggering old memories. Others say that
it is truly a guide coming to escort the person to heaven. I don’t
know which one is true but I have been privileged to witness this
part of the journey.

Another thing that happens is that the dying will speak of
preparing to travel or to change. My dad did this. He kept
saying, “The train is late, I have to get on the train.” This is a
common one I have seen many times. Sometimes it is a bus or a
plane or other. But it is a message which tells the loved ones
that the time is getting closer. Other people talk of seeing a
place. Again, ask them about it. Reassure them if they are
confused or frightened. Let them know that they are safe and
whatever they are seeing is okay. Another interesting thing is
that many people will know the time of their death or will keep
asking what time it is. As you begin to leave and you say, “See
you tomorrow.” The dying person might tell you, “No you won’t.”
Sometimes it is absolutely true and sometimes it is wishful
thinking as the person is ready for their journey. The main thing
to remember is that the confusion of the dying is normal. They are
disconnecting from this world and letting go of what has held them
here. There mind is now somewhere else. And this is okay. Again,
don’t argue or judge or discount their experience. Enjoy the ride
with them.

One thing that happens sometimes a few days or a few hours before
death is that the person may have a sudden burst of energy. This
is a gift. For some reason, many people who have been sleeping all
of the time, suddenly wake up and start talking again. This can be
very confusing for their loved ones. They believe that a miracle
is happening and that the person is going to get better. What they
don’t realize is that what is really happening is that death is
even closer. My friend, Amber, told me about her dying horse. Her
beloved horse was dying. He couldn’t leave the stall or walk
anymore. The day before he died, he got this sudden burst of
energy and went out and played with the other horses for a few
hours. The vet had warned her about this phenomenon so she looked
at it as a gift. Her horse had one more bright moment in his life.
And then, hours later, he died a good death. So, enjoy the moment
if you are lucky to get it. If someone comes back to you for a few
minutes or hours, remember it is not going to last forever. Say
anything else you need to say and be grateful you got the chance.

Near the very end, the person will become very unresponsive. That
doesn’t mean that they can’t still hear you or feel your touch.
Talk to them as if they are still with you. Be cautious about
talking about things you wouldn’t usually say in front of them. I
have witnessed families saying in the room, “So what does the will
say?” while the person is still alive. One of the best ways to
communicate with the dying is by touch. Put some lotion on their
hands or their feet and give them a massage. Climb into bed and
take them into your arms. Think about how you would comfort a
child. You would stroke their head, cuddle with them and make them
“feel” loved. As death approaches, tell them you loved them and
that it is okay for them to go. People will hold on for a long
time waiting to hear these words. They want you to say, “I will
miss you but I will be okay. The family will be okay. You taught
me what I need to know so I will be okay. We will take care of
each other.” Or any words like that.

Also, remember that some people need to die alone to protect their
loved ones. Over and over again, nurses will tell me of a spouse
who sits vigil day after day. They never leave to bathe or to eat.
And finally after days of waiting, the spouse gives in and says,
“I am just going to run and get a cup of coffee in the cafeteria.”
And as soon as the person leaves, the patient dies. The spouse
comes back and is devastated that they weren’t there and that they
missed it. I know people that have been shattered by this
experience. But what they didn’t know is that their loved one was
protecting them and didn’t want to put them through witnessing
their death. It wasn’t that the spouse didn’t matter; it was that
the spouse mattered too much. With my dad, he kept holding on for
days and days. Finally I said to him, “I know you need to do this
alone. I am going to go now dad. I love you and I know you won’t
be here when I get back. Goodbye.” I went outside and 20 minutes
later he was gone.” I was glad he was able to let go and do it his
way. People do have to die on their own terms. We can’t control
the process. Even when people are really out of it, they still
seem to die their own way. At the opposite end of the spectrum,
many people can’t let go until either a person or certain people
have arrived. My recent hospice patient was like that. I was
surprised he was still there when I visited him. He had every
physical symptom of impending death but he was still holding on. I
realized his brother was due in about 3 hours and then I
understood. He held on for the brother’s visit and then he died
peacefully.

Ultimately, you just don’t know. You don’t know what your loved
one will need until you are in the moment. Whatever happens is
okay. And you don’t have to be perfect. Just be present and
loving. I always feel so honored to be a part of a person’s dying
process, whether I get to be present in the early days as they are
coming to terms with their approaching death or in the last moments
of the person’s life. It is an incredibly intimate experience and
one that I have been privileged to be a part of. I hope you can
find the beauty and profound nature of the experience as well. If
you have other questions, feel free to contact me at
viki@kindethics.com.

Subscribers Comments:

Elizabeth P from New Jersey
“Viki helped me in my crisis. There was no wait, no down time, and
she knew her stuff!”