Hospice 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 London, England.

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 service 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 England 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 ill.

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 service 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 controversial issue.

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 forget."

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 picnic!"

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 Karen's arms.

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."