This is the second article in a five-part series that explores the experiences of patients and families who have used hospice services.

Most people are unfamiliar with hospice care. This series demystifies it by sharing with you what family members of hospice patients think that you might want to know about it.

Kathee, who lives in Phoenix, AZ, described the circumstances that led her to call for hospice services for her husband Bill. "At the point of his serious decline from terminal brain cancer, when things got out of control for me in caring for Bill at home without help, I contacted Hospice of the Valley here in Phoenix to inquire about their services to patients who are still in the midst of treatment."

Typically, hospice services are reserved for people who are no longer receiving aggressive medical care. The focus shifts from trying to cure patients to trying to ensure that they have the best quality of life possible for the time that they have remaining.

Kathee continued, "We knew that there would soon be a turning point where treatment might stop. I just desperately needed moral support and resources to call on." And the hospice accommodated her. "RNs and social workers came out on at least two or three occasions to our home to examine and evaluate Bill to see what they could do for us. When I had late evenings of desperation and exhaustion, when I just couldn't cope anymore, I'd call the hospice to talk to someone. They apparently put notes in our file which alerted RNs and social workers to our need for more services, and they always followed up with calls and/or visits."

She reported, "Within about four weeks of this service, Bill took a turn for the worse and paramedics were called. During the ensuing hospital visit, I was told that it would be fairer to Bill to discontinue treatment, that it was no longer going to help. He was just too sick and weak to continue with it. I was advised to let the disease take its course because it had already spread to the brain stem and he was shutting down."

Bill needed more care than Kathee was in a position to provide at home, and it was agreed that he would be moved to a Hospice of the Valley facility.

Kathee said, "He was there for eight weeks to the day. During that entire stay, I 'lived' in his room, sleeping on the couch, and was at his side for most of the time. Guest meal trays were brought in for me. I left the facility three times in eight weeks only to run home briefly to fetch things I needed. I decorated his room with pictures from home, and his entertainment unit had all the comforts one would want, from music CDs to DVD player to TV. I had a never-ending supply of snacks and coffee/water/juice/soda."

She was impressed that the staff "not only served to care for my husband and preserve his dignity; they were also willing to comfort me and what I was going through and offered advice. They were especially helpful with the 'end of life' questions I had, and put a lot of my fears at ease."

She was very moved by the attentiveness of the staff to her husband. "Even after his death, when they came in to cleanse his body and prepare him for transport to the mortuary, they were gentle, caring, and loving. I believe they would have been loving even if I wasn't sitting there. I know because I had 'caught' their staff going the extra mile on many occasions ... once I walked in on an aide who was holding his hand while feeding him. Another time I walked in on an aide who was cleaning his fingernails and putting lotion on his hands. Another time she was putting Chapstick on his lips and then placed his Chapstick into a hole she had created in his tissue box so we could readily find it when needed for next time."

She was touched by the dedication and thoughtfulness of the staff. "They help people at the most crucial point in their lives and truly make a difference for the patient and their families. Many hospice patients do not even have families visiting them. It is the loneliest part of their lives. I've seen how they go the extra mile for dementia/Alzheimer patients who are fall risks, bringing them to their station, talking to them, showing love and affection for a forgotten human."

Her experience echoes that reported in recent medical research: "I believe the hospice was responsible for extending my husband's life, as limited as it was at that point.  They gave him much peace and comfort, and they brought him to the finish line with the least amount of pain or suffering, assuring me of the steps they'd take along the way if necessary to ease the final moments. My husband gave me the greatest gift of all, a special moment just before he died."

Kathee contrasted her experience to the alternative. "Had we been released to home care, my experience would have been 1,000 percent different. Had I been home trying to be caregiver all by myself with no outside help to give me respite along the way, to help me with day-to-day tasks, etc., my husband's final weeks would have been significantly different and I would have been a tired, haggard wife who had no time whatsoever to sit and love him through the end. I would have been tremendously burned out like I was in the weeks prior to him being admitted to the hospice and that would have significantly changed his end-of-life experience and mine."

Kathee concluded, "Here it is, nearly six months later, and I still have nothing but positive feelings about the staff that cared for my husband.  I would make the same choice again ... Surprisingly, I'm no longer afraid of death like I was when Bill was first diagnosed."

-- Next -- 054. Woman Prefers Hospice to Home