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Stepping stones in care needs: turning to hospice after a terminal diagnosis

by Carol Bradley Bursack, Editor-in-Chief

With life comes death. Death is part of the cycle, and no matter how fantastic our medical care is, one day each of us must die. While death is rarely a pleasant topic, our society has become a little more open to discussing death as more publicity is given to having a living will, or health directive, that will express our health care wishes should there be a time when we can't speak for ourselves. Since most of us don't want to die in pain, hospice care is often mentioned is peoples end-of-life documents. When someone's life is pronounced medically terminal, turning to hospice care is a good place to start looking for care.

The hospice message that "no one need die in pain" is one many of us find appealing. Yet, hospice care is still rather a mystery to multitudes of people. Also, as with any other type of care, some hospices are better than others. In general, however, most hospice organizations comply with their mission of helping people live the last months or their lives with dignity and free of pain.

Hospice care becomes personal

While I'd been aware of hospice care for years, the first time I used the service was for my dad. After ten years of dementia brought on by side effects of surgery, Dad was weakening. He also was in substantial pain. The dementia and his decline in health had made it hard for him to communicate. As is the case with many people with dementia, Dad couldn't readily articulate his pain. He would prop himself up in bed by his elbow and slam his fist into his other hand. Over and over, he'd pound as though he was trying to drive something away. He was. It was pain.

Acceptance of impending death is a necessary step

Dad had been in an excellent nursing home for a decade, and the nurses knew him well. We all agreed it was time to call in hospice. It was hard for me, as I had to come to terms with the fact that Dad was dying. I believe this is the hardest part for many people and why they put off calling in hospice care. To do so means you must have come to acceptance that your loved one will die. The person involved, unless unconscious, must know. The aging spouse, if there is one, must know. That was the hardest part for me--the fact that my mother had to be brought to accept Dad's impending death. For Dad's sake, we all had to be brave.

I called our local hospice and they kindly sent someone to my workplace. We sat at a side table--it is a moment I'll never forget--in the newspaper library where I worked. I signed the papers. I asked the man who came to me with the forms if my mother could be left in the dark. He kindly, but firmly, said no. They would work with Mom.

Hospice in action

The social workers and the chaplain were excellent with Mom. Painful as it was to acknowledge the fact that Dad was dying, she accepted hospice help readily when she saw how effective the team was. Dad was soon out of pain and the hospice team worked seamlessly with the nursing home staff, so there was no gap in care and really very little change other than increased attention.

Mom even told me that when her time came she knew she wanted hospice care. She came to rely on the chaplain and the nurses. Five months after Dad's death, Mom's intractable pain was too much. The doctor knew her time was limited and hospice took over her care. Under hospice care, she, too, was free of pain for the first time in years. She died, peacefully, five months after Dad.

Pain control in stages

There are many misconceptions about hospice care. One of them is that they slam the person with heavy drugs that make them "zombies." A good source for hospice information is hospicenet.org. A reader will find some good, clear explanations of how hospice uses drugs.

Morphine is often the drug used as it can be given at very low doses and increased as needed. My mother-in-law was not under hospice care, but she had difficulty breathing. She would tear out the tubes used to give her oxygen, so the doctor ordered low dose morphine to help her breathe easier. It was very effective. There was never a need to increase her morphine, as pain wasn't the issue. She died later when her lungs could no longer function.

Both of my parents had morphine for pain. Hospice gave them as low as dose as was possible to handle their pain. Each of them was a bit sleepy for a couple of days and then adjusted. Dad was far more alert after his pain was managed with morphine than he'd been for months.

Working with families

A good hospice will work with the family of the patient and honor their religious and personal beliefs. Medicare covers hospice care for people medically qualified. Most health insurance policies do, as well. My personal experience with hospice was that they were team players, caring only for the good of the patient and the family. They were there to make the last months, weeks or days of a human being as peaceful and rewarding as possible.

The phrase most hospices hear from families after a death is "why did we wait so long?" When families witness hospice care, they see love and kindness. They see that people are given the minimum amount of medication to make them comfortable. Many people then can have quality time with their families, rather than lie in agony. There are some people who actually rally and go off of hospice care for awhile. That is celebrated. When their disease progresses they go back on hospice care.

Certainly it's hard to accept the inevitable--the impending death of a loved one. However, few of us want to see our loved ones endure more pain than necessary. I, for one, am grateful we have the choice of hospice care should we need it.