This is the third article in a five-part series that explores the experiences of patients and families who have used hospice services.
Emotions run high when family members start talking with organizations that provide hospice, as husbands and wives and sons and daughters of formerly vibrant, active people confront the fact that their loved one's condition isn't going to improve. Despite the challenging circumstances, hospice often shines even though the road is sometimes rocky.
Madeline tells her story.
"I had started seeing signs that my mother's end was near about six months before she died. I initiated a discussion with her about 'general options.' She stated she would prefer to be at home. She got a terminal diagnosis about eight weeks before she died."
Madeline had been an executive in health care and knew that hospice could provide services to her mother at home. She arranged for a nurse from the hospice organization with the best reputation in her city to come to the house to get acquainted with her mother, Bernice.
Madeline reported, "I had warned her that my mother was hostile to the idea of hospice and that I needed her only to open a dialogue so that my mother would trust that they would take care of her when the time came." Instead, for some reason the nurse started the conversation with Bernice by focusing on what she would have to give up in order to get hospice services, and "the visit went incredibly badly."
Generally, for hospice services to be covered by insurance, patients must agree to forego treatments that are no longer reasonably expected to cure them or to improve their health. Bernice was taking a drug that fell into that category. Madeline reported that the nurse chose to introduce Bernice to hospice by saying, in effect, "You have to get off this med because we don't cover it or you can pay for it yourself and then we will do x, y, and z for you. Sign here."
Madeline said, "My mother -- never one to beat around the bush -- lashed out with complete anger, venting about all the terrible things she had heard about hospice." Madeline knew that hospice services would be very beneficial to her mother at some point, but after this conversation, "I felt as though I had been left up the proverbial creek without a paddle."
Then came the crisis. Bernice was suddenly hospitalized -- on Mothers' Day -- when she became unable to move her legs. The next Friday, the hospital said that she was going to be discharged in a few hours because there was nothing more that they could do.
Madeline was frantic. She recalled, "This was maybe the worst day of my life. It was the day I realized that this time, my mother was pretty far gone and she only had a few days left." She realized that she couldn't take care of her mother alone at home, and tried everything to get help. "I called every nursing agency in town ... called several nurses I knew locally ... and even asked a friend in another state who is a nurse if she might be able to come and help." But no one was available. "So, with the utmost reluctance and guilt, I enrolled her in hospice. I explained to my mother that this was for the weekend and promised that I would get her home." Madeline felt miserable.
She reported, "I drove to the hospice home and met with a social worker while the staff admitted my mother into her room." Because of several problems that arose with the arrangements before they even reached the facility, Madeline recalls, "I was pretty hostile. But -- bless their hearts -- they calmed me down. And then -- a miracle. I went into my mother's room and reaffirmed my promise to get her home. Her answer was, 'No, they're doing a good job. I will stay here.' She had only been there for 10 minutes and already the staff had won her over." Skeptical about this change of heart, Madeline kept asking for the next three days, but her mother "kept saying that she liked it there." So Madeline finally dropped the question.
The morning after Bernice was admitted, Madeline reports, "The staff told me that she was awake enough that she was talking to them and had them all laughing that night. My mother -- although picky about people -- was never one to miss a good party, so I knew this meant that she was completely comfortable there."
She continued, "I brought a few of her cherished things from her house, mostly pictures of her grandchildren. So we were able to have the best of both worlds -- camaraderie when we needed it, privacy when we needed to be alone. My brother and sister came from the East Coast for varying amounts of time. Each was completely impressed by the tender, sensitive care Mom got and also by the beauty of the home. We were all there together for her last full day."
Madeline noted that employees at all levels in the hospice home were very caring and sensitive in her mother's last days. She reported one encounter with a patient care technician: "George had been especially nice and was in the room when my mother took her last breath. Even though it was so expected, it was still a shock. He pulled me aside and whispered in my ear, 'Your mother would have been really proud of the way you took care of her.' How did he know that this was the exact thing I needed to hear? Today, almost six years later, I still treasure those words."
She continued, "Most of the staff lived their mission with pride, understanding it as 'a calling.' The staff was trained to know that everything they said to a patient or family member could be a make-or-break comment. The staff kept commenting on how close my mother and I were, evidenced by how much I was there and how involved with her care I was. They kept saying 'A daughter like you...' This surprised me, since I didn't think I did anything all that special. I even said something to one of the volunteers about how tempestuous my relationship with my mother had been at times, and she dismissed that with a wave of the hand, saying, 'Oh, that's just mother-daughter stuff.' Suddenly, it struck me that she was right. That comment made all the difference for me."
She concluded, "Most of the people who work for hospice do a wonderful job. (We got) what we needed -- a peaceful, dignified, loving, personal parting for my mother. That is the message I want to leave with you. Where it counted most, they were impeccable."