Hospice:  Not Such A Dark and Scary Word Anymore

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When I was young, my first experience with someone who was terminally ill was when my Uncle Freddy was dying of cancer.  My once fun-loving, jolly, Santa-Clause-playing, overweight, carefree Godfather was now lying in a hospital bed in the front room of my parents’ house, withering away to nothing.
He was my father’s older brother, and it was important to my father that he be with family, and kept out of an “institution.”  My mother was doing her best to take care of him, but I know it was heartbreaking for her.  I think in her own way, she thought that if she gave him just the right amount of food, the right amount of protein shakes, the right amount of water, and the right amount of medications, she could somehow make the cancer go away.  But it didn’t.
Eventually he stopped eating and drinking altogether, and barely responded to anyone talking to him.  At this point, he was transferred to inpatient hospice, where he died a few days later.  My parents were convinced that he died sooner than he should have, because of the “institution.”Unfortunately, in the years that followed, I had many more experiences with terminally ill relatives.  I lost another uncle, two more aunts, and my father-in-law to cancer, all of whom passed away while in inpatient hospice.  I had heard the term “hospice care” before, but I never wanted to understand exactly what it was, because all it meant to me, was death.
All it meant to me, was that I was about to lose another person that I loved.  To me, hospice care was nothing more than a nursing home where terminally ill people went to die.
It wasn’t until I started working in a geriatric doctor’s office, and subsequently in the field of in-home care, that I let myself learn what hospice really was, and how terminally ill patients and their families can benefit from hospice care, whether in the home, or at a hospice facility.It was then that I learned that hospice is based on the belief that each of us has the right to die pain free, and with dignity.  Hospice focuses on caring for the patient and the family, and not trying to cure the incurable. Hospice care is a team-oriented approach to medical care, pain management, emotional and spiritual support, and most of all, honoring a dying patient’s wishes.  While hospice care does not provide in-home caregivers, many families find it helpful to arrange for professional caregivers from local home care companies in order to help the patient with his or her daily personal care and supporting services.Hospice care is usually initiated by the patient’s primary care physician.  The doctor will refer the patient for hospice care if he feels that the patient’s condition is life-limiting, with a life expectancy of 6 months or less. The focus of care is no longer on treating or curing the disease. The goal of hospice care is to ease the patient’s pain, discomfort, and distress on all levels, and improve the quality of the life that remains.  With the focus now being on the patient’s quality of life, easing pain and distress allows the patient to spend his or her last months focusing on things that are ultimately the most important and meaningful.  Patients can spend time with their friends and family, rather than on trips back and forth to treatment centers, or violently ill from chemotherapy treatments that won’t extend their life more than a few months or weeks.It was late summer/early fall of 2009 when my brother-in-law, in his early 40’s, was diagnosed with glioblastoma.  The diagnosis hit all of us like a ton of bricks.  He’d had headaches for quite awhile, and he and his doctor suspected it was a sinus issue, or allergies.  But finally, a CT scan showed a 3-inch tumor on his brain. Over the course of many months, he underwent surgery, chemo, and radiation, but the day finally came when his medical team at Johns Hopkins said there was nothing else they can do.  Even though we already knew that glioblastoma had no cure, the realization that the fight was over, again, hit us like a ton of bricks.

It was about this time that in-home hospice came in, and focused on his and his family’s quality of life. Keeping him as comfortable and pain free as possible, and allowing him to spend time with his wife and two sons is what was important. I remember our visits to his house, eating pizza, watching football games, and just making memories, knowing that our time together on Earth was very limited.  On the day he left us, just three days after Christmas of 2010, many relatives and friends gathered at his home for one last goodbye.  His house was packed with people, and we were crying, hugging, laughing, and remembering.  I don’t think this would have been possible without the help of hospice care.

Hospice may signal the end of treatment, mark the end of keeping up false hopes, and when patients and families are forced to accept their ultimate fate.  But, I think in a way, it opens the door for a spiritual and emotional healing.  You are given the gift of quality time, rather than extra time, and there’s nothing scary about that.

Click here for more information on hospice care:

National Hospice and Palliative Care Organization


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