by: Karen Love, Founder CCAL
Recent experiences have me wondering if our country does a
better job caring for and about people when they are dying in a hospice program than when they are living. My mother passed away earlier this year in a hospice. The last several months of her life included numerous hospitalizations, several ambulance trips to the Emergency Department, a 10-day stay at a nursing home for rehab services, and many doctor and therapy appointments.
During this time she received care from the spectrum of health care settings including primary, ambulatory, acute, rehabilitation, sub-acute, nursing home, and hospice. The clinical care she experienced in all of the settings – except the nursing home – was excellent. Yet it was only in the hospice setting that she and our family experienced humane care.
While my mother was only in the hospice for five days, the staff and volunteers all took the time to get to know us, made us feel welcome and at home, were attentive to our comfort needs, went out of their way to answer questions, and even made sure we knew when food was set out. Everyone we encountered at the hospice was kind, caring, sensitive, and thoughtful. They were as focused on my mother’s clinical needs as her human needs. As a result, the sad and difficult experience of dying for my mom and losing a parent -grandparent for our family was special and memorable.
In contrast, my mother’s 10-day stay at the nursing home was barely humane and mostly unpleasant. Not one staff member took time to get to know anything about her other than her medications. Despite the fact that she was very ill and scared, the staff bathed and toileted her as if she was an object. The environment was noisy and intrusive at night making sleep difficult.
The other care settings at least provided good quality clinical care, but ranked low in humanism. Staff generally were hurried and only focused on her clinical care: taking her temperature; drawing blood; and delivering medications. Occasionally someone would mention how cold a room was, but make no effort to do something about it or to get a blanket. It was as if they had blinders on about the fact that they were caring for human beings with emotional, physical, mental and social needs.
In our family’s experience, all the talk about person/patient-centeredness was just that…talk. It’s hard to understand why. Not only was the time at hospice good for our family; it was the only setting where the staff seemed to actually enjoy being there. Maybe person-centered and humane care is good for staff too.