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Understanding the Terminally Ill and Dying
By Andria L. Sigler-Smalz, M.A.
Clinical Pastoral Counselor
I remember my first visit overseas to Germany in the early 1980s, alone and never
having traveled out of the country. There was fear and apprehension over what I
would experience there- what it would be like, whether I would understand my
surroundings, and whether I would be safe and well-treated. An aspect of death
and dying that is so challenging is just the simple fact that to us, it is unknown; we
have not been there before. When it comes to the end of life, people wonder what
the process of dying will be like; for instance, will it be painful, scary, emotionally
traumatic, and alone? Those who have received a terminal diagnosis sometimes
research near-death experiences and have read both positive and negative
accounts of what people experienced. Yet we have no idea if these accounts can be
relied upon since these individuals did not die. Since these accounts bring no relief,
the question remains, what does it "feel like" to die?
I have had real-life experiences which taught me much more than any textbook ever
could. Reflecting upon my work with a cancer patient as a young therapist, I
shudder to remember just how much I did not understand the complexity of her
issues. I only wish I could apologize for my inability to grasp all she was
experiencing and the fears she was facing. Around that same time, a close friend
received a stage 4 breast cancer diagnosis. In my cluelessness, or maybe my state
of discomfort, I was incapable of meeting her needs during that time. Thankfully, I
was not the only friend in her life, and others made up the difference.
My real-life "tutors" were elderly family members. As I traveled with them through
the unpredictability of their protracted health decline, they eventually reached the
end of their journey here. These experiences breathed life into the formulas and
theories presented in my textbooks. Since that time, clients I have assisted have
experienced a much more informed therapist who possesses the capacity to
understand the losses they are facing, in fact, the most profound loss they have ever
encountered in this life.
Over time, I have identified many concerns people encounter when experiencing a
terminal illness or arriving at the end of their time. These questions and fears all fall
under "How do you get ready to die?" and may plague the believer and unbeliever
alike. They involve the body, spirit, mind, and emotions. Although others may travel
along this journey with them for a time, the reality is that most of the processing
happens alone. When we arrive at the end, friends and family can walk us no
further than the door.
Preparing to die involves getting ready to leave everyone we know and love. These
people have been our connection and security; they have been the earthly
companions with whom we have laughed, cried, loved, and experienced life's
conflicts and troubles. Our lives have been intertwined with and made meaningful
through our friendship with them. It is painful to say goodbye because this goodbye
is forever.
There is a recognition that we will leave this earth alone while everyone else who
was in our life will continue to do all the things we love to do- but without us. They
will be getting together for meals, celebrating birthdays and holidays, experiencing
other social outings, or just sitting around the house talking and laughing. But we
will no longer be a part of any of this. A few years ago, while attending a close
friend's birthday party, I noticed an acquaintance sitting alone on a couch, quietly
observing. Knowing she was dealing with advanced M-stage melanoma, I joined her
to engage in conversation. She was a party observer rather than a participator while
feeling like she was looking in from the outside. She said that the world of her
friends was marching on, but she was now on a different path, going towards a
different world. The sense of aloneness was profound.
Worrying about those who will be left behind is another anxiety that can arise. When
we exit this earth, we leave behind spouses, children, young adults, or elderly
parents who we believe depend on us to meet current needs or ones they will
experience in the future. Settling the nagging question of who will be there for them
or who will take our place becomes a high priority.
There may be a profound struggle grappling with the concept or idea of not existing
(on this earth). What does it mean to cease to exist when, in our memory, we have
always "been"? Thinking about this can create a kind of existential terror, and it is
challenging to verbalize or share because others often do not want to engage on this
level. At this point in their life, they are not yet dying.
We know that we will cease to exist here, but the question remains, will we cease to
exist altogether? How will that feel? Did we get the spiritual questions correct, if
there is a God we will face, will he be angry, kind, compassionate, or judging?
People can wonder if what they have believed is true about "what happens next" and
question if these beliefs are reliable. People of faith often struggle to share these
doubts and fears because verbalizing to others can bring rebuff or correction, which
only serves to magnify self-criticism over their perceived faithlessness. While
encouragement and hope are desperately needed, if this comes in the form of
thoughtless Scriptures tossed out without a strong emotional presence, it only
increases the sense of aloneness.
Many will ponder whether they made a difference in their time on earth. How did our
life count and positively impact this world? There may be regrets to process about
things done or left undone, apologies to offer, or relationships to mend. Estranged
family members or friends may refuse to "mend the fence." Relationship with God is
often a point of concern, and there may be some regrets and reconciliation needed
there. A soul-searching inventory can be painful as we review our lives and decide if
our time here was well-spent.
And lastly, many experience deterioration of body or mind- more medical conditions,
chronic pain, or memory issues. These all necessitate an increased dependence on
others or even a skilled nursing facility or frequent hospitalization posing frightening
challenges. This mental or physical decline can take place slowly over time which
piles loss upon loss. Or it may have been a medical emergency that changed a life
forever. In either case, I have heard it described as a person being on the road filled
with all things familiar, but then suddenly, one is snatched up and placed on a
foreign and frightening road. This defining moment marks a specific time in our
history that changes how we reference events - before or after the onset of our
illness.
This article has focused primarily on the spiritual and emotional needs, experiences,
and state of mind of the terminally ill or dying client as the foundation for therapeutic
intervention and treatment. Without this understanding, it is impossible to offer
meaningful support and targeted assistance. It will enable you to walk alongside
your client, parishioner, family member, or friend in a way that helps them prepare
for what is ahead. But do not be surprised if this takes you on a journey of your own
as it causes you to face your mortality fears, mend relationships in your life, and
instill a new appreciation for each day of this gift of life.