Care: A Compassionate Alternative
By Phyllis Moses
"I am a traveler on the journey from one life to the next, and I
need a place where I can be welcomed and looked after and cared for and
be myself on that journey." So spoke a dying patient to Dr. Cicely
Saunders, founder of St. Christopher's Hospice in
Death is not a subject that is easy to
understand or even to talk about. However, confronting death is
essential to living, because that is exactly what it is-a part of
living. Life and death are two separate faces on the same coin.
The deaths of two special people in my life forced me to confront the
realities associated with their final illnesses, and their passing. No
hospice program was available in our area at the time, but I knew there
had to be a better way to deal with the exhausting care required of the
family in an illness like this. In my search for answers, I found a
lifesaver; I found hospice. After volunteering my
s to direct patient care, I met many others whose lives were deepened
by caring for those who were dying.
Minnie was assigned to me on my first day. There was a spark of mischief
in her eyes, yet there was a certain grace and loveliness about her.
Though she was all alone in the world, she never complained of being
lonely. We hit it off immediately. I asked her what I could to for her
during my visits. To my surprise, she asked, "Can you sing to
me?" For a moment, I panicked. "Sing? How can I do that?"
My intention was to fluff her pillow, write letters for her, but sing?
My next reaction was, "I must try."
I remembered a couple of hymns I used to sing in church. Hesitantly, I
began to sing. My voice was unsteady, but grew stronger as I continued.
Then my confidence grew and I sang two more songs before our time
together was over.
Twice a week for several months, I sang to Minnie. A beautiful
friendship grew from this experience. The stories she told me of her
life long ago were funny and entertaining.
Minnie died, but the light she brought into my life burned even
brighter, for her friendship changed me in countless ways. She gave me a
priceless gift: the sense that death is but a doorway to a new life, a
life filled with love, with laughter, and yes, with music. Her calm
acceptance of her approaching death is typical of hospice patients. It
is a model of sweet acquiescence.
"You matter, because you are you. You matter to the last moment of
your life, and we will do all that we can, not only to help you die
peacefully, but also to live until you die," so spoke Dr. Saunders.
Hospice is not a new concept; it goes back to
to the days of the Crusades, when the sick and injured crusaders were
ministered to in roadside stations along their way. Hospitals practicing
aggressive medicine have taken their place. However, the trend is
shifting back to this method of caring for people who are terminally
What is hospice all about? Some think hospice is about death and dying.
That's true, in a sense. On the other hand, hospice is about time, it's
about life and living. The goal in hospice is to give patients the right
to be alive until they die. Hospice is also about hope; not hope for a
cure for the disease they suffer, but hope to resolve old issues, to
make amends with family and friends. These are attainable goals.
Another important question is: "When and why is hospice
needed?" A patient may be qualified for hospice when the physician
certifies that he or she has only six months or less to live. At that
time, the hospice staff puts into place a medically-directed,
compassionate program for the patient and the family, which is provided
through three basic concepts; palliative medicine, (medicine to lessen
their pain, but is not curative), holistic care, and the team approach.
The primary goal of hospice is pain management. When patients are free
of pain, they are quiet and serene, giving the family a calm environment
for their final exit.
Working together, this team makes it possible for the patient and the
family to share the remaining time in a tender, loving way. Some
families take advantage of the opportunity to create lasting memories.
Doesn't our present medical system provide
s that take care of the patient and their family needs? Dr. Sherwin
Nuland states: "We live in an era not of the art of dying, but of
the art of saving life, and the dilemmas in that art are multitudinous.
As recently as half a century ago, that other great art, the art of
medicine still prided itself on its ability to manage the process of
death, making it as tranquil as professional kindness could. Except in
the too-few programs such as hospice, that part of the art is now mostly
lost, replaced by the brilliance of rescue, and unfortunately, the all
too common abandonment when rescue seems impossible."
"Brilliance of rescue?" What exactly is happening to patient
(and their families) resulting from this "brilliance?" They
die in extreme pain, and this is the last memory the survivors retain of
their loved ones. It is because of this outlook, in addition to the
present medical system's inept dealing with death, that euthanasia and
more particularly, physician-assisted suicide has become such a
How is hospice funded? The majority of insurance policies now cover
hospice care. The belief is widely accepted that in-home care is a major
factor in the reduction of soaring hospital costs. Medicare and Medicaid
coverage is also available for qualified persons. A percentage of
non-covered patients fall into the category covered by the hospice
company itself. No one is refused treatment because of a lack of funds.
Twelve-year-old Jimmy was dying with leukemia. Paul, his older brother
was doing all he could to make Jimmy's remaining days meaningful. One of
their rituals was having cookies and milk before bedtime each night.
One night as they were putting a jigsaw puzzle together while enjoying
their snack, Jimmy hooked an arm around his brother's neck and asked,
"Paul, I wonder if there'll be Oreos in Heaven?" Paul said,
with a lump in his throat, "Jimmy, for you, I'm sure there will be
Oreos and cold milk in Heaven."
He later said, "Jimmy's illness and death gave me an unforgettable
memory. Take a moment for something as simple as sharing cookies and
milk, to celebrate a life of someone you love and can never
A hospital is an important place; it's a place for healing illnesses, a
place to be born, but it's no place to die. Frequently, the patient is
isolated from the family; all too often a wall of secrecy
"protects" patients about their actual medical condition. And
what if a loving couple feels the need for a romantic snuggle? Would
that be possible? Despite the good that hospitals do for their patients,
it's still far better for people to die in their own beds with their
family around them.
Jerry, nine-years old, was born with a congenital heart disease. Each
day his body becomes weaker. As Jerry notices the not-so-subtle changes
in his condition, it's apparent to him that he's going to die. This
brings about many questions he asks his parents, "Can I wear my
blue jeans when I die? What will they put my body in? Will I be able to
fly my model airplanes when I get to Heaven?"
Jerry's parents decide in view of his curiosity, to take the entire
family on a field trip to the funeral home and the cemetery. Eagerly
anticipating a family outing, Jerry said, "Let's have a
At the funeral home, Jerry looked at several caskets, all different
colors, types and sizes. The funeral directors answered many questions
Jerry asked, being as candid as they could. From there, the family went
to the cemetery and had their picnic, generating another precious memory
for Jerry and his family.
"I want to die at home!" As Dan's plaintive words exploded
from him, he gazed helplessly out his hospital room window. Cancer had
diminished his once-husky frame to near skeletal size. Former
professional football player, Dan Stephens, age 44, was blind-sided by
this unexpected tragedy in his life.
His wife, Karen, said, "Dan's condition is serious, and I'm fully
aware of the toll it will take on me. But I'm determined that he is
allowed to die in his own home, if this is his wish." Arrangements
were made for a hospice organization to come to help. Shortly after the
decision was made, Dan and Karen left the hospital.
Dan was relieved to be in his own home, which became a meeting place for
friends, family and neighbors. They shared conversation, laughter and
lots of food.
Predictably, soon after Dan's release from the hospital, the end drew
near. On his final day, family and friends sang softly in the other
room. His wife, and his best friend washed his hair, freshened his
clothing and gently stroked his face. He was tranquil, showing neither
fear nor pain. Then at last, he slipped quietly away, while cradled in
Dan's death was as gentle as his family and friends could have wished
for. His peaceful death came as a result of sensible decisions made with
tender consideration for the final days of his life.
What do we learn from Dan and Karen's life and death experiences? As
Karen later said, "Together, we learned to live in the knowledge
that life is precious and fleeting. We know that to live in the midst of
adversity leads to a dependency on God. But the most important thing is
that as we learn to live, so we learn how to die."